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Library of Congress Cataloging-in-Publication DataNames: Nickitas, Donna M., editor. | Middaugh, Donna J., editor. | Feeg, Veronica D., editor.Title: Policy and politics for nurses and other health professionals : advocacy and action / [edited] by Donna M. Nickitas, Donna J. Middaugh, and Veronica D. Feeg.Description: Third edition. | Burlington, Massachusetts : Jones & Bartlett Learning, [2019]Identifiers: LCCN 2018028645 | ISBN 9781284140392 (paperback)Subjects: | MESH: Health Policy | Policy Making | Lobbying | Health Care Costs | United StatesClassification: LCC RA395.A3 | NLM WA 540 AA1 | DDC 362.10973--dc23LC record available at https://lccn.loc.gov/2018028645 6048 Printed in the United States of America22 21 20 19 18 10 9 8 7 6 5 4 3 2 1 VP, Product Management: David D. CellaDirector of Product Management: Amanda MartinProduct Manager: Rebecca StephensonProduct Assistant: Christina FreitasProduction Editor: Kelly SylvesterSenior Marketing Manager: Jennifer ScherzayProduct Fulfillment Manager: Wendy KilbornComposition: S4Carlisle Publishing Services Cover Design: Kristin E. ParkerText Design: Kristin E. ParkerRights & Media Specialist: John RuskMedia Development Editor: Shannon SheehanCover Image (Title Page, Part Opener, Chapter Opener): © Anthony Krikorian/Shutterstock Printing and Binding: McNaughton & GunnCover Printing: McNaughton & Gunn All rights reserved. No part of the material protected by this copyright may be reproduced or utilized in any form, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without written permission from the copyright owner.

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Production Credits Acknowledgments ix Preface xi Contributors xiii SECTION 1 Introduction 1 Chapter 1 Nursing’s History of Advocacy and Action . . . . . . . . . . . . . 3 Chapter 2 Policy and Politics Explained . . . . . . . . . . . . . . . . . . . . . . . 25 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .\ 43 SECTION 2 Population Health 6 3 Chapter 4 Population Health Care: Access, Cost, and Quality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .\ . 65 Chapter 5 Global Health: A Vision for Action . . . . . . . . . . . . . . . . . . . 87 Chapter 6 Mental and Behavioral Health . . . . . . . . . . . . . . . . . . . 10 5 SECTION 3 Affordable Care Act: From Enactment to Sustainability 13 5 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . \ . 13 7 Chapter 8 Healthcare Quality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 5 Brief Contents iii Anthony Krikorian/Shutterstock SECTION 4 Health Financing: Payers, Markets, and Models 18 5 Chapter 9 Healthcare Costs: Follow the Money . . . . . . . . . . . . . . 18 7 Chapter 10 Private Health Insurance Market . . . . . . . . . . . . . . . . . 20 7 Chapter 11 Medicare: Protector to Innovator . . . . . . . . . . . . . . . . . 23 1 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations: A Story of Misconceptions . . . . . . . . . . . . 25 5 Chapter 13 Innovation for the Delivery System of the Future: Medical Homes, Accountable Care Organizations, and Bundled Payment Initiatives . . . . . . . . . . . . . . . . . 279 SECTION 5 Health Care and Provider and Care Delivery 2 89 Chapter 14 Hospitals: Consolidation and Compression . . . . . . . . . 29 1 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals . . . . . . . . . . . . . . . . . . . . . . . . . 31 3 Chapter 16 Physicians: It Is Increasingly about the Team . . . . . . . 341 Chapter 17 Health Information Technology and the Intersection of Health Policy . . . . . . . . . . . . . . . . . . . . . 371 Chapter 18 Political Power of Nurses: Harnessing Our Values and Voices . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 3 iv Brief Contents Contents Acknowledgments � � � � � � � � � � � � � � � � � � � � � � � � � � � � ix Preface � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � xi Contributors � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � xiii SECTION 1 Introduction 1 Chapter 1 Nursing’s History of Advocacy and Action � � � � � � � � � � � � � � � � � � 3 Nurses as Advocates � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 4 Advocacy and Public Health Nursing � � � � � � � � � � � � � � 6 History and Political Advocacy � � � � � � � � � � � � � � � � � � � � 9 Nursing Strong � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 11 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 13 Chapter 2 Policy and Politics Explained � � � � � � � � � � � � � � � � � � 25 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 26 Policy Defined: A Framework for Government Action � � � � � � � � � � � � � � � � � � � � � � � � � � � 26 The Policy-Making Process � � � � � � � � � � � � � � � � � � � � � � � 31 What Is at Stake for Nurses and Other Health Professionals? � � � � � � � � � � � � � � � � � � � � � � � � � � 37 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists � � � � � � � � � � � � � � � � � � � 43 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 44 Stakeholder Power � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 46 Expertise � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 48 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 51 Toolkit Case Studies � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 52 SECTION 2 Population Health 6 3 Chapter 4 Population Health Care: Access, Cost, and Quality � � � � � 65 Lessons from Nursing History on Vulnerability, Disparities, and Political Advocacy � � � � � � � � � � � � � 66 The Face of Vulnerability Today � � � � � � � � � � � � � � � � � � � 69 Vulnerability and Disparities from a Population-Based Perspective � � � � � � � � � � � � � � � � � 73 Political Advocacy toward Health Equity � � � � � � � � � 77 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 81 Chapter 5 Global Health: A Vision for Action � � � � � � � � � � � � � � � � � � 87 The Politics of Global Health in the United States of America � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 89 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 98 Chapter 6 Mental and Behavioral Health � � � � � � � � � � � � � � � � � � � � 10 5 Introduction to Mental and Behavioral Health � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 106 Federal Government and Presidential Efforts to Improve the Nation’s Mental Health � � � � � � � 107 State-Related Mental Health Policies � � � � � � � � � � � � 109 City and Community-Directed Mental Health Care Efforts � � � � � � � � � � � � � � � � � � � � � � � � � � � 110 Policies Encouraging Consumer-Directed Mental Health and Behavioral Health Services ( The Recovery Movement) � � � � � � � � � � 111 Challenges in the Provision of Mental Health and Behavioral Health Services � � � � � � � � � � � � � � � 112 Groups Requiring Additional Political Protection � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 112 v Anthony Krikorian/Shutterstock Lower Socioeconomic Status–Related Mental Health Policies � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 113 Veterans’ Use of Mental Health Services and Policy Issues � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 114 Policy Innovations to Improve Mental Healthcare Outcomes � � � � � � � � � � � � � � � � � � � � � � � � 115 Ongoing Challenges: A Look to the Future of Policy Making in Mental Health and Behavioral Health � � � � � � � � � � � � � � � � � � � � � � � � � � � � 116 Summary � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 118 SECTION 3 Affordable Care Act:

From Enactment to Sustainability 13 5 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain � � � � 13 7 Health Reform in the United States: Recent and Past History � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 138 Overview of the Patient Protection and Affordable Care Act � � � � � � � � � � � � � � � � � � � � � � � � � � 145 Financing Health Reform � � � � � � � � � � � � � � � � � � � � � � � 149 Quality Improvement and Prevention Initiatives � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 150 Constitutionality � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 150 States and Health Reform � � � � � � � � � � � � � � � � � � � � � � � 152 Key Issues Going Forward � � � � � � � � � � � � � � � � � � � � � � � 153 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 157 Chapter 8 Healthcare Quality � � � � � � � � � 16 5 Quality Care and Public Policy � � � � � � � � � � � � � � � � � � 166 Human Error � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 167 Patient-Centered Care � � � � � � � � � � � � � � � � � � � � � � � � � � 171 Error Measurement Tools � � � � � � � � � � � � � � � � � � � � � � � 172 Agency for Healthcare Research and Quality � � � � 172 Patient Safety Indicators � � � � � � � � � � � � � � � � � � � � � � � � 173 National Database of Nursing Quality Indicators � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 173 National Error-Reduction Efforts � � � � � � � � � � � � � � � � � 174 Public Quality Reporting Systems � � � � � � � � � � � � � � � 176 Centers for Medicare & Medicaid Services � � � � � � � 177 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 178 SECTION 4 Health Financing: Payers, Markets, and Models 185 Chapter 9 Healthcare Costs: Follow the Money � � � � � � � � � � � � � � � � 18 7 Health Care Is Different � � � � � � � � � � � � � � � � � � � � � � � � � 188 Resource Allocation and Market Role � � � � � � � � � � � 189 Cost —The Main Problem � � � � � � � � � � � � � � � � � � � � � � � 193 Health Policy—ACA and Beyond � � � � � � � � � � � � � � � � 198 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 200 Chapter 10 Private Health Insurance Market � � � � � � � � � � � � � � � � � � 20 7 History of U �S� Health Insurance Reform � � � � � � � � � 208 Health Insurance Plans � � � � � � � � � � � � � � � � � � � � � � � � � � 209 Employer-Sponsored Health Insurance � � � � � � � � � � 214 Health Insurance Exchange Marketplace � � � � � � � � 215 Laws and Regulations Impacting the Provision of Health Insurance � � � � � � � � � � � � � � � � � 215 The Health Reform Changes Impacting Private Insurers � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 216 ACA and Its Impact on Employers � � � � � � � � � � � � � � � 216 Private Insurance Industry Response to ACA � � � � 218 Health Insurance Legislative Changes on the Horizon � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 219 Opportunities for Nursing � � � � � � � � � � � � � � � � � � � � � � � 219 Quality Patient Care and Care Coordination Strategies � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 220 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 222 Chapter 11 Medicare: Protector to Innovator � � � � � � � � � � � � � � 23 1 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 232 Evolution of the Passage of Medicare: Timeline and Milestones � � � � � � � � � � � � � � � � � � � � � 233 Current Medicare Structure � � � � � � � � � � � � � � � � � � � � � 236 Overview of Medicare Spending � � � � � � � � � � � � � � � � 241 How We Pay for Medicare � � � � � � � � � � � � � � � � � � � � � � � 241 Medicare Quality Improvement Organizations � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 242 vi Contents The Future Outlook: The Way Forward � � � � � � � � � � � 243 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 247 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations: A Story of Misconceptions � � � � � � � � � � � 25 5 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 256 Health Outcomes in the United States in Relation to 10 Developed Nations � � � � � � � � � � � � 257 Populations Served by Original Medicaid � � � � � � � 259 Original Medicaid Is Different Program in 50 States and Washington, DC � � � � � � � � � � � � � � � � 260 Traditional Medicaid Costs and Variation by State � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 261 ACA Medicaid � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 265 Who Is Left Out � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 266 Health Insurance and the Health of Vulnerable People � � � � � � � � � � � � � � � � � � � � � � � � � � � � 267 Chapter 13 Innovation for the Delivery System of the Future: Medical Homes, Accountable Care Organizations, and Bundled Payment Initiatives � � � � � � � 279 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 280 The Innovation Center: Promoting Care Delivery Models for the Future � � � � � � � � � � � � � � � 280 Rationale for New Models � � � � � � � � � � � � � � � � � � � � � � � 281 The Four Major Healthcare Service Delivery Models � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 281 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 286 SECTION 5 Health Care and Provider and Care Delivery 2 89 Chapter 14 Hospitals: Consolidation and Compression � � � � � � � � � � 29 1 Hospitals’ Role within the Delivery System � � � � � � 292 Hospitals in a Historic Context � � � � � � � � � � � � � � � � � � 292 Baseline Information � � � � � � � � � � � � � � � � � � � � � � � � � � � � 294 Challenges Facing the Community Hospitals � � � � 298 Hospital Strategies in a Competitive Market � � � � � 301 The ACA and The Rationalization of Hospital Care � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 303 Healthcare Policy, Health Reform, and the Role of Hospitals � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 306 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals � � � � � � � � � � � � � 31 3 Why Primary Care? The Case for Change � � � � � � � � 315 Overtreatment, Overuse, Waste, and Healthcare Harm � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 315 Support for Value-Based Care as a Bipartisan Approach � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 317 How Payment Reform Shapes Needs and Opportunities in Primary Care � � � � � � � � � � � � � � � � 318 What Skills Do Nurses Need in These Advanced Primary Care Settings? � � � � � � � � � � � � � 324 Nursing Education � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 329 Mental Health � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 331 Dental Care � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 331 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 332 Chapter 16 Physicians: It Is Increasingly about the Team � � � � � � � � � � � 341 Medical Professionalism � � � � � � � � � � � � � � � � � � � � � � � � 342 Physician Supply: Who Are the Doctors? � � � � � � � � 343 How Are Physicians Practices Organized and Reimbursed? � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 348 Physician Accountability � � � � � � � � � � � � � � � � � � � � � � � � 353 Medical Errors, Physician Practice, and the Barriers to Quality Care � � � � � � � � � � � � � � � 356 Overcoming the Barriers to Quality Care � � � � � � � � 356 Conclusion: Choices and Interests � � � � � � � � � � � � � � � 358 Chapter 17 Health Information Technology and the Intersection of Health Policy � � � � � � � � � � � � � � � � � � � 371 Introduction � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 372 Federal Origin and Influence in Development of HIT � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 373 Contents vii Nursing and Health Information Technology � � � � 378 Nursing Terminology and the Data of Nursing Care � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 380 A National Action Plan: The Macro Perspective on HIT � � � � � � � � � � � � � � � � � � � � � � � � � � � 381 Nursing and the Electronic Health Record: The Micro Perspective on HIT � � � � � � � � � � � � � � � � � 382 Health IT: The Intersection of Data Security and Health Policy � � � � � � � � � � � � � � � � � � � � � � � � � � � � 383 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 391 Chapter 18 Political Power of Nurses:

Harnessing Our Values and Voices � � � � � � � � � � � � � � � � � � � 40 3 Origins of the Nursing Profession � � � � � � � � � � � � � � � 405 Nursing Definitions: Past and Present � � � � � � � � � � � 406 Nurses and Policy � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 407 The Nursing Workforce � � � � � � � � � � � � � � � � � � � � � � � � � 413 Transforming the Care Delivery System � � � � � � � � � 415 Pathways to Nursing as a Career Choice � � � � � � � � � 416 Specialization and the Evolution of Nursing Roles � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 419 Current State of the Profession � � � � � � � � � � � � � � � � � � 419 Enhanced Nurse Licensure Compact � � � � � � � � � � � � 421 21st-Century Nursing: Evolving Roles for Nurses � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 421 Policy as a Tool to Influence Nursing Professionalism and Nursing � � � � � � � � � � � � � � � � � 425 Conclusion � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 427 Legislative Resources � � � � � � � � � � � � � � � � � � � � � � � � � � � 427 Federal Agency Sites � � � � � � � � � � � � � � � � � � � � � � � � � � � � 428 Other Related Sites � � � � � � � � � � � � � � � � � � � � � � � � � � � � � 429 Index ��������������������������������������� 449 viii Contents Acknowledgments It is with sincere appreciation and gratitude that we would like to acknowledge the many individ - uals, including family, friends, professional col - leagues, and students, who have made this third edition possible. Special thanks go to those pro - fessional nurses who have gone before us pav - ing the way by being stewards of the discipline, advocates, and activists in promoting nursing, public health, and policy. As the editors, we are profoundly grateful to continue in their foot - steps, fulfilling our promise to safeguard the health of society and ensuring that future gen - erations of nurses recognize how health and public policy are instrumental to their educa - tion and practice. To my co-editors, Donna J. Middaugh and Veronica D. Feeg , your enduring friendship, men - torship, and insight have made this book possi - ble. With your profound trust and unwavering commitment, this third edition is offered in the ongoing quest to ensure all nurses harness the power within and bring their voices and values to the bedside, boardroom, classroom, and halls of Congress to promote policies that educate and inform the public about what nursing is, not just what nurses do. We also would like to acknowledge the superior oversight and dedication of Tricia Plummer, our team administrator, who help coordinate all the essential activities that made this third edition such a seamless success. Tri - cia, your professional skills and support were greatly appreciated. To my husband, Michael, whose love, pres - ence, and encouragement has allowed me to fulfill my professional hopes and dreams. Thank you for making this such an exciting journey and always believing all things are possible. To my children, Nick, Lili, Kate, Luke, and JP, your joy and love have fueled my energy and enthusiasm to live my life by the words of Mahatma Gandhi:

“Keep your values positive because your values become your destiny.” Always be positive and be an example so that others may follow. — Donna M. Nickitas To my husband Robert and our son Rob - ert Guy, who have awakened my soul and are my inspiration in everything I do. They have taught me to love unconditionally, enjoy life, live with purpose, take risks, and strive for ex - cellence. Robert Guy: You have become such a compassionate, dedicated nurse! We are so proud of you! Also, to the memory of my mother, Alpha Duff, a teacher, who taught me to never stop learning. — Donna J. Middaugh To my husband Alan, you are my rock and my enabler. You have always given me space to do what makes me happy and wings to make me soar into new endeavors without fear of failing.

You make the days easy for me to be produc - tive in my own way. You give me understanding when I’m unraveled; you give me comfort when I need it most; you give me love in all you do. To my daughter, Kelly, you are my sun and the light of my life. You have become my teacher and my sage with your wise guidance and words ix Anthony Krikorian/Shutterstock of wisdom. You provide me with creative in - spiration in my work by modeling it in yours. To my mother, Mary, and in memory of my dad, Americo “Red” DeCarolis, you both nur - tured my passion for learning and supported me unconditionally and financially throughout my years in college. You may not have finished high school but you always valued the impor - tance of education. — Veronica D. Feeg x Acknowledgments Preface Sally S. Cohen Why this book? Why now? Nurses and other health professionals have many textbooks on health policy to choose from. Donna M. Nickitas , Donna J. Middaugh , and Veronica D. Feeg’s third edition of Policy and Politics for Nurses and Other Health Professionals has distinct features that make it a wise investment for faculty, students, and others seeking concise, expert, and useful information on how to understand and influ - ence health policy. First, the editors have carefully chosen the most salient issues on government agendas and not overwhelmed readers with the plethora of all possible health policy issues around us. This is critical in order to make health policy mean - ingful to and within reach of students and cli - nicians who can be quickly overwhelmed by the world of health policy. Second, this edition’s addition of case stud - ies is of tremendous benefit. Based on decades of teaching health policy at all levels of nurs - ing education and to interdisciplinary and in - terprofessional groups of students and faculty, I am convinced that policy case studies are es - sential. They offer faculty options for innovative assignments and discussions that encourage stu - dents to write or speak about health policy in a nonjudgmental context. The case studies, which are strategically placed within the chapters, of - fer real-life scenarios. These scenarios typically have more than one possible solution to a policy problem. Case studies also: (a) facilitate discus - sions about policy problems, (b) teach students to articulate significant themes in health policy, (c) require synthesis of valid evidence, and (d) demonstrate the importance of political analy - ses. The editors have wisely included more than one case study in some chapters to demonstrate how one policy can be applied to many differ - ent situations or issues. The third advantage of this text is that the editors have a well-honed vision of what health professionals need to know in an era of con - tinually shifting public policy sands. Nickitas, Middaugh, and Feeg’s third edition is based on the premise that health professionals need to be as nimble in government arenas as they are in clinical settings. Moreover, they recognize that this entails linking local, national, and global health issues because of their inherent inter - connectedness. With media and technology enabling rapid dissemination of information, the editors have provided content and case studies that encourage effective communication using online resources. Some of these issues primarily apply to individuals and populations with access to the In- ternet and other technologies. Nurses and other healthcare providers recognize that vast parts of the world lack such resources. People in such locales are struggling to find clean water, erad - icate severe hunger, and prevent common and new infectious diseases. Moreover, the geopolit - ical terrain has become increasingly complex as war, terrorism, and natural disasters strike across the globe. The realities of climate change and en - vironmental health risks make the sweeping dif - ferences in allocation of resources between the “haves” and “have nots” an ever-present challenge for health professionals. These global challenges are in contrast to other public health issues, in - cluding the proliferation of noncommunicable xi Anthony Krikorian/Shutterstock conditions such as obesity, cardiac illness, and mental health and behavioral problems (espe - cially substance abuse and addictions). Nickitas, Middaugh, and Feeg wisely ad - dress the diversity of these issues by including chapters on global and population health as in - tegral to the text—and not as “add-ons” at the end. By addressing poverty and other socioeco - nomic causes of health problems, they acknow - ledge the importance of health policy beyond the doors of the clinic or hospital. Similarly, they frame the chapter on physi - cians as an issue of interprofessional teamwork, instead of trying to present physicians or any other professional as separate components of the healthcare delivery system. By emphasizing the importance of team care, they have minimized the risk of readers engaging in the familiar and useless “physician–nurse” games. Will this text endure forever? No health policy text can meet that challenge. However, given the complexity of health policy and the significant problems of teaching it to nurses and health professionals, this third edition of Policy and Politics for Nurses and Other Health Profes - sionals can facilitate teaching and learning across diverse settings and student populations. In the health policy and education arenas, which can be characterized by considerable disagreement and little consensus as players vie for scarce re - sources, this text is a winner and one that can bring players together as they find common ground in addressing the global and local issues on which people’s lives and well-being depend. xii Preface Contributors Nancy Aries, PhD Professor of Social Policy School of Public Affairs Director of Baruch Honors Programs Baruch College The City University of New York New York, New York Steven Baumann, PhD, APRN-BC, RN Professor Hunter College Hunter-Bellevue School of Nursing New York, New York Claudia J� Beverley, PhD, RN, FAAN Professor (Secondary), Department of Health Policy and Management Professor College of Nursing Professor (Secondary) College of Medicine Director, Arkansas Aging Initiative, Donald W. Reynolds Institute on Aging University of Arkansas for Medical Sciences Little Rock, Arkansas Linda Bradley , MSN, MPH, PHCNS-BC Assistant Professor New York City College of Technology Brooklyn, New York Pennie Sessler Branden , PhD, CNM, RN, CNE Barbara Caress Senior Consultant Service Employees International Union New York, New York Ellen Chesler Senior Fellow Roosevelt Institute New York, New York Barbara Cohen, PhD, RN Professor of Health Services School of Health Studies Berkeley College New York, New York Wesley Cook , DNP(c), APRN, FNP-BC, CPSN Nurse Practitioner Washington, DC Brigitte Cypress, EdD, RN, CCRN Associate Professor East Stroudsburg University Department of Nursing East Stroudsburg, Pennsylvania Patricia Eckardt , PhD, RN Molloy College Rockville Centre, New York Veronica D � Feeg , PhD, RN, FAAN Associate Dean and Director PhD Program in Nursing Molloy College The Barbara H. Hagan School of Nursing Rockville Centre, New York Stephanie Ferguson, PhD, RN, FAAN, FNAP Consulting Associate Professor Stanford University Stanford, California Founder, President, and Chief Executive Officer Stephanie L. Ferguson Associates, LLC Amherst, Virginia xiii Anthony Krikorian/Shutterstock Shirley Girouard , PhD, RN, FAAN Professor and Associate Dean College of Nursing SUNY Downstate Medical Center Brooklyn, New York Valerie Gruhn Doctors Without Borders/Médecins Sans Frontières Joyce Hahn, PhD, RN, APRN-CNS, NEA-BC, FNAP Associate Professor School of Nursing George Washington University Washington, DC Christine Hancock Director C3 Collaborating for Health London, United Kingdom Lauran Hardin , MSN, RN-BC, CNL Senior Director Cross-Continuum Transformation National Center for Complex Health and Social Needs Camden Coalition of Healthcare Providers Camden, New Jersey Olga S� Kagan , PhD, RN Eileen Levy, RN, PhP Nurse Practitioner at NSLIJ Huntington Hospital Huntington, New York Sandra B� Lewenson, EdD, RN, FAAN Professor College of Health Professions Lienhard School of Nursing Pace University Pleasantville, New York Jennifer E � Mannino Donna Middaugh, PhD, RN Clinical Associate Professor Associate Dean for Academic Programs Coordinator, Nursing Administration Masters Specialty College of Nursing University of Arkansas for Medical Sciences Little Rock, Arkansas Geraldine Moore , EdD, RN Molloy College Rockville Centre, New York Lois Moylan , PhD, RN Molloy College Rockville Centre, New York Donna M� Nickitas, PhD, RN, NEA-BC, CNE, FAAP, FAAN Dean and Professor Rutgers University School of Nursing Camden , New Jersey Editor, Nursing Economic$, The Journal for Health Care Leaders Pitman, New Jersey Betty Rambur, PhD, RN, FAAN Routhier Endowed Chair for Practice Professor of Nursing University of Rhode Island Kingston, Rhode Island Roby Roberston, PhD Professor Emeritus School of Public Affairs University of Arkansas – Little Rock Little Rock, Arkansas Yael Rosenstock Director of Programming Center for Ethnic, Racial , and Religious Understanding CUNY New York, New York Nancy Rudner, APRN Professor of Nursing George Washington University Washington, DC xiv Contributors Janice A� Selekman , DNSc, RN, NCSN, FNASN Professor School of Nursing University of Delaware Newark, Delaware Brenda Helen Sheingold, PhD, MBA, BSN, FNAP Assistant Professor Director Health Care Quality Graduate Programs George Washington University Washington, DC Lisa Sundean , PhD, RN Assistant Professor Department of Nursing University of Massachusetts , Boston Boston, Massachusetts Joel Teitelbaum, LLM Associate Professor Department of Health Policy and Management Milken Institute School of Public Health George Washington University Washington, DC Anh Phuong Tran , BSN, RN-BC, ONC Adult Health Nurse Practitioner New York, New York Marie Truglio-Londrigan, PhD, RN Professor College of Health Professions Lienhard School of Nursing Pace University Pleasantville, New York Ralph Vogel, PhD, RN Clinical Assistant Professor College of Nursing University of Arkansas for Medical Sciences Little Rock, Arkansas Helen Werner, PhD, RN Assistant Professor Program Coordinator, Upper Division Monroe College School of Nursing Monroe, New York Sara Wilensky, PhD Faculty Milken Institute School of Public Health George Washington University Washington, DC Contributors xv 1 © Anthony Krikorian/Shutterstock SECTION 1 Introduction CHAPTER 1 Nursing’s History of Advocacy and Action CHAPTER 2 Policy and Politics Explained CHAPTER 3 A Policy Toolkit for Healthcare Providers and Activists © Anthony Krikorian/Shutterstock Nursing’s History of Advocacy and Action Sandra B. Lewenson and Donna M. Nickitas OVERVIEW The American Nurses Association (ANA) reminds nurses of the social contract between nurses and the public that “reflects the profession’s long-standing core values and ethics, which provide grounding for health care in society” (American Nurses Association [ANA], 2010, p. 10). The ANA Social Policy Statement has articulated nursing’s social obligation since it was first published in 1980. Nurses turn to this document to understand how nursing fulfills this obligation by providing ethical and culturally competent care to individuals, families, communities, and populations. It also helps nurses explain their role in the larger society, to new members of the profession, and to nurses already working in the field. New position statements about inclusivity and diversity by the American Association of Colleges of Nursing (AACN) (2017) and the American Academy of Nursing (AAN) (2016) contribute to a sense of responsibility nurses share to fulfill the social obligation to society. The AACN (2017) states that “to have equitable systems, all people should be treated fairly, unhampered by artificial barriers, stereotypes or prejudices” (p. 173). It continues to address unconscious and conscious bias of which we as nurses must be aware to make a change. Advocacy includes, and if not, should include, the notion of inclusivity and diversity. This chapter explores political advocacy in light of nursing’s role and responsibility to advocate for and act on behalf of those for whom nurses have contracted to provide care. The first section of the chapter explains why nurses need to know history to be effective advocates and why knowing history matters to advocacy. It provides historical exemplars to highlight how history informs the profession as it continues to invoke the social contract that nursing maintains with society. The second part of the chapter examines a more contemporary look at nursing’s political advocacy efforts and what it means for nurses, the profession, and the health of the public at large. 3 CHAPTER 1 OBJECTIVES ■ Discuss why nursing history is relevant to health policy and nursing advocacy and action. ■ Explore historical exemplars that provide evidence of nursing’s ability to advocate for individuals, families, communities, and populations. ■ Analyze nursing’s role in how political advocacy impacts nurses, the profession, and the health of the public at large. ▸ Nurses as Advocates Although society reportedly trusts nurses to work toward accomplishing the goals set forth for them by the profession (ANA, 2010), nurses may not be grounded in how they reached these “long-standing core values” that the nursing pro - fession developed over time. As nurses advocate for their patients—whether seen as individu - als, families, communities, or populations— an understanding of nursing’s enduring and long-standing values that are rooted in its his - tory provide depth and breadth to their efforts.

To this end, it is important to know nursing’s historical role in ensuring access to care; it is important to know nursing’s contributions to - ward patient quality and safety measures; it is important to know how nursing interventions changed over time in response to the context in which nurses practiced; and it is important to know how nurses and the profession adapted to shifts in the social, political, economic, and cultural environment (D’Antonio & Lewenson, 2011). Fairman (2017) writes that “our past shapes everything we do, whether we explicitly acknowledge it or not” (p. xi).

Why Study Nursing History?

Historian and nurse educator Ellen Baer and col - leagues respond to the question of why nursing history should be studied: Just as a nurse can make little progress caring for or curing a patient’s presenting problem without knowing the patient’s physiological, psychological, and cultural history so is it for a nurse trying to make sense out of the persistent problems and possibilities in nursing and health care.

To make right decisions in planning nursing’s future in the context of our complex health-care system, nurses must know the history of the actions being considered, the identities and points of view of the major players, and all the states that are at risk. These are the lessons of history. (Baer, D’Antonio, Rinker, & Lynaugh, 2001, p. 7) Some lessons from the past that support the understanding of political advocacy and action can be learned by examining how Flor - ence Nightingale influenced the development of nursing education programs that started in 1873, and led to what became known as the Modern Nursing Movement. It began with the first three United States Nightingale training schools: the Bellevue Training School for Nurses in New York City; the Boston Training School for Nurses at Massachusetts General in Boston; and the Con - necticut Training School in New Haven, Con - necticut. Following the opening of these three schools, hospitals around the country recog - nized the value that student nurses bring to the hospital because care could be provided at rela - tively low cost and the hospital would have no obligation to hire the nurses when they gradu - ated. Nurses, after their training was complete, would need to find work elsewhere, typically in private duty or in the emerging field of pub - lic health nursing. Twenty years after the opening of these schools of nursing, early nursing leaders 4 Chapter 1 Nursing’s History of Advocacy and Action recognized the need to organize nurses to con - trol the quality of practice and training as a way to protect the public. Between 1893 and 1912, four professional nursing organizations formed to do just that: the National League for Nurses, formed in 1893 (originally called the American Society of Superintendents of Training Schools for Nurses); the American Nurses Association, started in 1896 (originally named the Nurses’ Associated Alumnae of the United States and Canada); the National Association of Colored Graduate Nurses, which formed to address ra - cial bias in nursing and health care and was in existence between 1908 and 1952; and finally, in 1912, the National Organization of Public Health Nursing, formed to control practice and educa - tional standards during the rising movement of public health and public health nursing in the United States. This organization ended in 1952 when the National League for Nursing assumed its role (Lewenson, 1993). Even before women in the United States gained the vote in 1920, nurses sought legis - lation that would define nursing practice, and they advocated for the protection of the pub - lic by prohibiting anyone who was not profes - sionally trained from calling him- or herself a nurse. This required convincing lawmakers, at that time only men, to support nursing legisla - tion; the nurses knew they could not vote into law the early nurse practice acts. While nurses struggled for statewide nursing registration, they had to “fight battles against long hours of work and opposition to nursing education” ( Lewenson, 1993, p. 171). To accomplish their goals, some nurses, either individually or through the early nursing organizations, began to support the work of the suffragist movement and aligned themselves with the larger women’s movement of the early 1900s. Individual nursing leaders, like public health pioneer Lillian Wald and nursing suffragist Lavinia Dock, advocated for health - care reforms in the community and the legisla - tive arena. The professional organizations that formed during this period did so to protect the public from uneducated nurses and to develop standards for nursing education and practice. Although an in-depth history of this period is beyond the scope of this chapter, it is im - portant for nurses to understand that political advocacy was part of the profession’s early iden - tity. Political advocacy and action in nursing are not new or innovative. Nurses have always been political advocates for those in their care (Lewenson, 2012). As a result, the early efforts made by nurses and their professional orga - nizations provide a narrative for and insight into today’s advocacy efforts, where protection of the public means ensuring a level of educa - tion for all nurses, the development of quality and safety standards, and the ability of nurses to practice to the fullest extent of their educa - tion, as recommended by an Institute of Med - icine report (2010).

History Counts Fairman and D’Antonio (2013) wrote, “history counts in health policy debates” (p. 346). Bring - ing a historical perspective to discussions about health care deepens our understanding of the is - sues by recognizing the evolution of ideas across time. In the debate about control of the “newly” minted medical homes of today, understanding the roles of early public health nurses in provid - ing primary healthcare services to individuals, families, communities, and populations in both urban and rural settings can trigger some use - ful ideas or solutions about what to call the new entity, who should finance it, and who should lead it (Keeling & Lewenson, 2013). The current debate centered on medical homes provides such an example. The term was first coined in the 1960s and defined a medical model of care for chronically ill pediatric pa - tients that looked at control issues, inter- and intradisciplinary issues of providing care, and the financial aspects of care. Physicians led the earlier medical home movement that has evolved to mean “a model of primary care that is accessi - ble, continuous, comprehensive, family-centered, coordinated, compassionate and culturally ef - fective” (American Academy of Pediatrics, 2002, as cited in Keeling & Lewenson, 2013, p. 360). Nurses as Advocates 5 and found support for the venture from philan - thropists and other nursing leaders. Wald’s work expanded from just nine public health nurses working in one settlement house that was estab - lished in 1893 to more than 250 nurses working throughout the New York City area in at least seven different locations (Buhler- Wilkerson, 2001; Keeling, 2007; Lewenson, 1993). The Henry Street Settlement was one of the few pub - lic health organizations to hire black nurses to care for black patients (Pitt-Mosley, 1996). This policy of inclusion did not exist in most health - care settings, and discrimination was typically the order of the day, whether in the north or south or whether conscious or unconscious. While caring for the families, Wald saw a close relationship between the health of the pub - lic and civil responsibility. In a speech she deliv - ered in 1900 at the sixth annual meeting of the American Society of Superintendents of Train - ing Schools for Nurses, Wald said that “among the many opportunities for civic and altruistic work pressing on all sides nurses having superior advantages in their practical training should not rest content with being only nurses, but should use their talents wherever possible in reform and civic movements” (Wald, 1900, as cited in Birnbach & Lewenson, 1991, p. 318). In keep - ing with her beliefs, Wald and her colleagues at Henry Street introduced several legislative ini - tiatives that would improve the health of chil - dren, such as the introduction of nurses in public schools (Wald, 1915). Wald (1915) described how she advocated for hiring nurses in the local pub - lic schools to decrease truancy rates, given that children were sent home due to illness and lack of treatment. As of 1897, physicians had only recently been hired by the New York City De - partment of Health to assess children in school.

Doctors sent children home from school when any contagious illnesses were found. However, this did not address some of the pressing health issues because the physicians did not provide treatment for conditions such as trachoma, a contagious eye infection that plagued school- age children at the time. Wald (1915) wrote about her experience convincing legislators of Nurses use the words that define the medical home of today to describe nursing’s work of providing accessible, continuous, comprehen - sive, family-centered, coordinated, compassion - ate, and culturally effective care. Knowing the history of nursing serves to highlight the pro - fession’s strong contribution to health care in the United States.

▸ Advocacy and Public Health Nursing Exploring some of the public health initiatives that Wald established—the Henry Street Set - tlement and the American Red Cross Town & Country—offers excellent examples of how nurs - ing, history, and political advocacy and action intersect. By studying the work of those nurses and nursing leaders within these settings, we not only learn about the role nurses played in primary health care (as described by Keeling & Lewenson, 2013), but we can also learn about the healthcare advocacy that public health nurses sought for those individuals, families, and com - munities. We also learn about the unconscious and conscious bias shared by society, includ - ing nurses, towards black nurses and the sub - sequent outcome that race played in healthcare outcomes. The next section uses these two early 20th-century public health initiatives as exam - ples of political advocacy by public health nurses.

Advocacy at Henry Street Lillian Wald graduated from nurses’ training in 1891 from the 2-year diploma-based program at New York Hospital in New York City. Within 2 years of graduating, she and her school friend Mary Brewster recognized the overwhelming healthcare needs of immigrant families living in the overcrowded and unclean conditions of the tenement houses on the Lower East Side of New York City. Filled with a sense of social ob - ligation to improve the health of society, Wald and Brewster began the Henry Street Settlement 6 Chapter 1 Nursing’s History of Advocacy and Action Within 1 month, the experiment was deemed successful, and an “enlightened Board of Esti - mate and Apportionment voted $30,000 for the employment of trained nurses, the first mu - nicipalized school nurses in the world” (Wald, 1915, p. 53). School nursing continues to be a concern for those interested in political advo - cacy to improve the health of our young and vulnerable populations. Historian Mary Gibson (2017) writes that: Today’s philosophy still reflects the pro - tective and hopeful beliefs of leaders in education of 100 years ago concerning the influence of child health on our nation’s future.  .  . therefore, keeping children in school, healthy and ready to learn, is a universal goal throughout the United States. (p. 37) Advocacy in the Town & Country Wald’s advocacy extended to families living in rural settings. One of the most compelling ex - amples is the establishment of the American Red Cross Rural Nursing Service (later known as the Town & Country). As Keeling and Lewen - son wrote (2013), this organization “served as the point of contact for families in rural com - munities where remoteness, isolation, and fewer physicians and nurses created barriers to care” (p. 362). Wald believed that the American Red Cross—already organized to provide nursing ser - vices during wartime and natural or manmade disasters—was the right vehicle in which to or - ganize public health nursing services throughout the country during peacetime (Dock, Pickett, Clement, Fox, & Van Meter, 1922; Keeling & Lewenson, 2013). Through Wald’s influence, philanthropists supported the implementation of this new rural public health nursing service.

During the first year, criteria were established for nurses who would collaborate with community leaders, physicians, and families to provide both curative and preventive health care in rural set - tings. The requirements to become a rural pub - lic health nurse were far reaching and included the value of assigning public health nurses in the schools in her book The House on Henry Street . In 1902, when a reform administration came into power, the medical staff was reduced, the physicians’ salary was increased to $100 per month, and they were expected to work only 3 hours per day. The health commissioner or - dered an examination of all public school pu - pils and was horrified to learn of the prevalence of trachoma. Thousands of children were sent away from school because of this infection.

Where medical inspections were the most thor - ough, the classrooms were empty. It was ironic that Wald watched the children who had been turned away from school playing with the chil - dren they had been sent home to protect. Few children received treatment, and it followed that truancy was encouraged: The time had come when it seemed right to urge the addition of the nurse’s service to that of the doctor. My colleagues and I offered to show that with her assistance few children would lose their valuable school time and that it would be possible to bring under treatment those who needed it.  .  .  . I exacted a promise from several of the city officials that if the experiment were successful, they would use their influence to have the nurse, like the doctor, paid from public funds. Four schools from which there had been the greatest number of exclusions for medical causes were selected, and an experienced nurse, who possessed tact and initiative, was chosen from the settlement staff to make the demonstration. . . . Many of the children needed only disinfectant treatment of the eyes, collodion ap - plied to ringworm, or instruction as to cleanliness, and such were returned at once to the class with a minimum loss of precious school time. Where more serious conditions existed the nurse called at the home. (Wald, 1915, pp. 51–52) Advocacy and Public Health Nursing 7 and urban public health settings. These courses were valuable for nurses who practiced in rural settings because they did not have the same sup - port systems as urban areas. Black nurses faced barriers to attending some of these early public health courses and, as a result, contributed to few entering this ser - vice. Frances Elliot Davis, a graduate of the Freed - man’s School of Nursing in Washington, DC, did attend the 4-month program at Teachers College and was admitted as a Town & Country nurse in 1917. She was considered the first black nurse to be admitted into the American Red Cross (Hine, 1989; Lewenson, 1993). Influenced by the return - ing soldiers and the influenza pandemic in 1918, Davis, along with other black nurses, were finally accepted into the American Red Cross reserves at the end of World War I. The bias of the mili - tary and, subsequently, the American Red Cross, reared itself in several ways. One of the most bla - tant ways was the designation of race on each of these nurses’ badges, separating them from their white colleagues. Frances Elliot Davis received her badge with the number 1-A inscribed on the back. This was one way the Red Cross that served as the gatekeeper into the Army Nurses Corps could maintain the practice of segregated living quarters and segregated health care. The National Association of Colored Graduate nurses advo - cated changes in these practices that eventually ended by mid-20th century (Lewenson, 2017). Wald’s advocacy extended to the use of me - dia to show the public what a rural public health nurse could do and to garner support for the initiative. While she was at the third meeting of the American Red Cross Committee on Ru - ral Nursing—the committee established by the American Red Cross in 1912 to develop the cri - teria for the Town & Country—Wald suggested that the committee “get in touch with the Publi - cation Syndicate, and Rural Nursing written up possible [ sic] in story form for the Ladies’ Home Journal and other popular magazines” (American Red Cross Town & Country Nursing Service, 1913, p. 2). At the same meeting, it was noted that Wald and others supported establishing a relationship with the Metropolitan Life Insurance Company pragmatic skills. Nurses were expected to ride a bicycle or a horse, or drive a car so that they could access their patients.

© fotorobs/Shutterstock More important, and often difficult to find, were nurses who had an education that prepared them to negotiate and collaborate with others in the community. Typical nurses’ training programs did not provide these skills. It was determined that a minimum of a 4-month education was needed to prepare nurses to work independently in com - munities across America (American Red Cross Rural Nursing Service, 1912–1914). Educational programs were established, like the one at Teach - ers College in New York, in conjunction with the Henry Street Settlement and the rural District Nursing Service of Northern Westchester, soon after the American Red Cross Rural Nursing Ser - vice formed. By 1914, the new public health nurse curriculum offered courses in sociology, munici - pal and rural sanitation, and experiences in rural 8 Chapter 1 Nursing’s History of Advocacy and Action the debate, and to offer a “way to think about the future” (Fairman & D’Antonio, 2013, p. 346). The work of the nurses at the Henry Street Settlement and the American Red Cross Town & Country gives two examples that can stimulate discussions about healthcare reform today. Readers are en - couraged to explore the many historical studies being completed and the early writings of nurses that can be found in nursing journals, such as the American Journal of Nursing . This journal has digitalized its entire collection from 1900 to the present, allowing readers to access arti - cles online and explore nursing advocacy over time. The American Association for the History of Nursing (AAHN) (www.aahn.org) also pro - vides information and resources for where one can go to find nursing archives, learn more about historical methods, and attend the association’s annual meeting where the latest in historical re - search is presented. The AAHN also publishes a well-respected journal, Nursing History Review , where readers can find outstanding historical research by leading historians. There are also many archival centers around the country, such as the Barbara Bates Center for the Study of the History of Nursing at the University of Pennsyl - vania and the Eleanor Crowder Bjoring Center for Nursing Historical Inquiry at the Univer - sity of Virginia. Centers such as these provide a wealth of archival data and support for those interested in historical research. The websites for these centers and other resources are avail - able on the AAHN website.

Nursing’s Political Advocacy and Action The next part of this chapter moves from the historical to the contemporary and further ex - plores the meaning of advocacy and action, as well as what that means for nurses, the profes - sion, and the health of the public. Today nurses must be politically active in professional nursing practice and health policy issues like the nurse reformers and activists before them. Nurses who can purposefully and effectively contribute to and the Steel Corporation whereby the Rural Nursing Service would “undertake nursing for these large concerns” (American Red Cross Town & Country Nursing Service, 1913, p. 4). Many of the communities in question were rural mining communities that required public health nursing services. The committee believed this relationship would be beneficial in many ways, including pos - sibly raising the standards of other nursing asso - ciations and economically supporting the cost of nursing supervision in these locations. Advocacy took many forms, which ranged from sitting on national committees to seeing that care was provided at local levels. The work of the public health nurse was framed by the needs of the community, the kinds of public healthcare organizations that were organized, and the geographical location. Each Red Cross rural nurse chapter—whether in the moun - tains of New Hampshire, in Kentucky, or in the West—directed the kinds of work that public health nurses would do, including bedside care for frostbite, well-baby clinics, school nursing, industrial nursing, classes in home hygiene and care of the sick, advocacy on town boards, and educational and publicity efforts about their work (Fox, 1921). Sometimes there was only one pub - lic health nurse in an area. At other times, pub - lic health nurses shared a district. Sometimes a nurse faced barriers by communities that were uncomfortable with outsiders offering care. The success of these American Red Cross Town & Country nurses relied on the ability to recruit and retain those who could handle the challenges of rural settings. This concern remained a constant and enduring problem throughout the life span of the American Red Cross Town & Country.

▸ History and Political Advocacy Political advocacy requires the depth and breadth of an evolving historical narrative to inform con - temporary debates in health care, to reflect the variety of perspectives that history can bring to History and Political Advocacy 9 Association suggests that high-quality nursing practice include advocacy as an essential aspect of patient care (ANA, n.d.). Advocacy is consid - ered both a philosophical principle of the profes - sion and a part of ethical nursing practice that ensures that the rights and safety of the patient are protected and safeguarded. Advocacy is the one professional construct that demonstrates a complex interaction among nurses, patients, professional colleagues, and the public (Se - landers & Crane, 2012). It is important to note that patients have rights and nurses have a le - gal and moral obligation to protect those rights.

As patient advocates, the ANA Code of Ethics for Nurses with Interpretive Statements (2015) offers nurses a moral framework to help shape their values to direct and influence actions so as inspire their advocacy. From the classroom to the bedside to the boardroom, nurses can leverage their professional expertise to provide the critical knowledge and analysis to transform public health policy and nursing practice. As stakeholders who are well prepared to engage in the policy-making pro - cess, nurses must stand ready to respond to an array of healthcare reforms confronting the na - tion’s delivery system by being full partners, with physicians and other healthcare professionals, in redesigning health care in the United States (IOM, 2010). Just as our “foremothers” before us, and in some cases fathers as well, nurses of the 21st century have an integral role in shaping and advancing policy solutions at a time when there is tumultuous political climate and a health care environment that may not clearly under - stand the values and contributions of nurses and nursing practice. Berkowitz (2017) recently described how important the need is for nurses to inform con - sumers about what nursing care is, including why and how it prevents illness, manages symp - toms, treats disease, and transforms the health of communities. Nickitas and Ferguson (2017) note how critical it is to advocate for and ensure that nurses globally can practice to the full scope of their education and licensure, have equal op - portunities for career development, and practice shaping public policy at the national, state, and local levels serve both the public and the profes - sion by advancing the nation’s health and pro - fessional practice. Nursing’s historical roots in important advocacy and action have shaped the profession’s political astuteness and work to keep pace with professional regulatory, statutory, and legal changes in education, practice, and research. The profession must remain nimble and responsive to policy changes by promoting and protecting the well-being of the population and nurses themselves. How can nurses have a profound influence on health outcomes? The answer is simple: We cannot afford not to. As long as the United States lags behind other de - veloped countries in care outcomes, despite the fact that the U.S. spends more on health care— $3.2 trillion in 2015, up 5.8% from the year be - fore (Centers for Medicare & Medicaid Services [CMS], 2015)—nurses need to advocate and act to promote health, prevent disease, and eliminate health disparities. Access to affordable, quality health care is a basic human right for all peo - ple (Daley, 2012). In 2010, Institute of Medicine (IOM), now known as the National Academies of Medicine, published its report, The Future of Nursing , which offered a blueprint for how the nursing profes - sion should advocate to improve the health of the nation, lead change in healthcare delivery, and increase the educational preparation of the nursing workforce. This blueprint is evidence on how nurses uphold the dignity and well- being of society by revolutionizing how nurses can be change agents and leaders in develop - ing healthcare delivery systems that will address health disparities and the social determinants of health like education, poverty, transportation, and housing. To effectively manage the ever-evolving healthcare delivery system, as well as the emerg - ing needs of populations and the profession, ev - ery nurse must understand and appreciate his or her role in advocacy. Advocacy is the ability to use one’s voice and position to address, sup - port, and protect the rights and interest of an - other (Zolnierek, 2012). The American Nurses 10 Chapter 1 Nursing’s History of Advocacy and Action work environment in their care (Smith, 1995).

By strengthening the protection of human rights and health equity, and promoting a Culture of Health, all can prosper and thrive. The next sec - tion of this chapter discusses how nurses will continue to amplify their voices and advocate to meet the changing landscape of health care.

▸ Nursing Strong Professional nursing care is essential to the healthcare system. Of the more than 3.6 million licensed registered nurses (RNs), approximately 84.7% are employed in nursing (62% in hospitals), and approximately 10% are employed in primary care or home care (U.S. Department of Health and Human Services, 2010, 2013), making reg - istered nursing the largest healthcare profession (ANA, n.d.). As such, nurses must advocate by bringing problems to the government and seek decisions in the form of programs, laws, regu - lations, or other official responses that create innovations and care models to transform the delivery and advance the nation’s health. To begin, nursing must advocate for changes within the profession. To successfully advance health care, the nursing profession must make significant strides to change the composition of the future workforce. This will require greater efforts toward the successful recruitment of underrepresented minorities into nursing.

Calculations of data from the U.S. Census Bureau (n.d.) reveal that the current RN work - force remains primarily female; the percentage of men in the workforce has increased to 12% from only 9% in 2001. Nurses from minority backgrounds represent 24% of the RN workforce.

Considering racial/ethnic backgrounds, the RN population is composed of 75.8% white, 11.5% black or African American, 4.8% His - panic or Latino, 5.8% Asian, 0.5% American Indian, 0.028% Native Alaskan, 0.2% Native Hawaiian/Pacific Islander, 0.1% Other Native, and 1% multiracial background (DATAUSA, 2018). The profession must do better to ensure that future nurses mirror the patient population in work environments that are free from vio - lence, harassment, and discrimination; these concerns are essential in today’s and tomorrow’s healthcare delivery system. To become engaged in advocacy, and to set the agenda for human resources and nursing resources for health care, nurses must be at the forefront of policy engage - ment, dialogue, and implementation. This en - gagement requires sound evidence and a political strategy that allows for increased understand - ing of the potential impact of linking the nurs - ing workforce with the globalization of health care, to ensure dignified and respectful health care for all persons, regardless of sexual orien - tation or gender identity (Nickitas & Ferguson, 2017). The demands for increased access and better healthcare outcomes will require nurs - ing to widen its influence in policy areas that address the health and healthcare needs of un - derserved and minority populations (Villarruel, Bigelow, & Alvarez, 2014). Nurses are essential healthcare providers and make significant con - tributions to the body of knowledge of improv - ing health and health care in the United States.

One way nurses can impact the nation’s health is to meet the 21st-century challenge of pop - ulation health management and population health. To meet this challenge, the Robert Wood Johnson Foundation (RWFJ; 2015) has com - mitted to advancing a national initiative called the Culture of Health by addressing key social determinants of health and empowering sup - port mechanisms to help people live healthier lives. A Culture of Health involves creating in - creased collaboration among healthcare systems.

For community organizations, this means mak - ing health a shared value, creating healthier and more equitable communities, and strengthen - ing the integration of health services and sys - tems (Martsolf et al., 2016). As political advocates, nurses are uniquely positioned to lead system change to improve care for populations and contribute to a Culture of Health in their communities by focusing on the patient and family-centered care. Nurses natu - rally view their patients holistically and seek to include all aspects of family, community, and Nursing Strong 11 Fostering interprofessional education and prac - tice builds the health team’s capacity to view high-risk vulnerable and underserved pop - ulations as a moral imperative and, as such, bring important perspectives to designing and delivering health services that are transforma - tive to improving health, lowering costs, and increasing patient satisfaction. To address care gaps and avoid service du - plication, improve the quality of patient-centered care, and control costs within and across set - tings, nurses must understand and interpret legislation and health policy. By being able to interpret healthcare reform from a nursing per - spective, nurses can determine how to best dis - tribute resources to individuals, families, and populations. For example, chronic disease is the central healthcare problem in the United States and is the leading cause of disability and death in the United States (Centers for Disease Control and Prevention, 2015; Miller, Lasiter, Bartlett Ellis, & Buelow, 2015). In fact, nearly one in two Americans suffers from chronic con - ditions such as diabetes, arthritis, hypertension, and kidney disease; these account for 7 of 10 deaths among Americans each year and 75% of the nation’s healthcare spending (Conway, Goodrich, Macklin, Sasse, & Cohen, 2011). The obesity epidemic and growing levels of prevent - able diseases and chronic conditions greatly contribute to the high costs of health care. Additionally, an aging population has in - creased the demand to address end-of-life care in a cost-effective manner (Rice & Betcher, 2010). Because chronic disease remains the pri - mary healthcare problem in the United States, nurses can lead change to improve the healthcare system at the population level (Lathrop, 2013; Miller, Lasiter, Bartlett Ellis, & Buelow, 2015).

As skilled researchers and clinicians, nurses are in key positions to advocate, lead, and partic - ipate in interprofessional initiatives, commu - nity coalitions, and policy enactments. Being a nurse advocate means joining the ranks of the nation’s care decision makers in order to become full partners in redesigning health care (IOM, 2011; Peltzer et al., 2015). for which they will provide nursing care. The recruitment of indivdiuals from underrepre - sented groups in nursing— specifically men and individuals from African American, His - panic, Asian, American Indian, and Native Alaskan backgrounds—is a major priority for the nursing profession. There is a moral imperative to achieve eq - uity and diversity, which involves increasing underrepresented groups in nursing, embrac - ing the policy process, and creating a cultur - ally and linguistically diverse care environment. A diverse healthcare workforce increases both minority participation in the health professions and a commitment towards cultural compe - tency in the treatment of all patients. A U.S.

Department of Health and Human Services report (2006) reveals that increased diversity among healthcare professionals leads to im - proved patient satisfaction, improved patient– nurse communication, and greater access to care for racial and ethnic minority patients who are best served by providers who are knowl - edgeable about their backgrounds and cul - tures. Increasing workforce diversity, ensuring fair and equal access to quality health care and healthcare resources, eliminating health dis - parities, and achieving health equity is where nursing’s political advocacy and action upholds the dignity of all people through our actions and our words. The U.S. Department of Health and Human Services and Healthy People 2020 (2013) define health equity as the attainment of the highest level of health for all people. Achieving health equity for all requires a collective effort across all disciplines and all sectors, including those outside nurs - ing. Therefore, nurses must align themselves with other healthcare professionals to address health disparities and health equity, specifically within the context of the social determinants of health. As an interprofessional healthcare team, all professionals must “draw upon their moral responsibility to respond to human suffering and become acknowledged partici - pants in the nation’s efforts to correct health disparity” (Harrison & Falco, 2005, p. 261). 12 Chapter 1 Nursing’s History of Advocacy and Action depend on their ability to give voice to a his - torical perspectives that recognize the political and contextual forces that shape health care and place nursing at the center of long-standing de - bate about health services delivery, knowledge formation, patient safety, technology and edu - cation for practice” (p. 351). To design and de - liver health services that are transformative in the direction that our nation needs at this mo - ment in time, we must remember how nursing’s historical influences of the past shape our ad - vocacy and actions of the future.

Discussion Questions 1. How does history inform nursing’s efforts to provide primary health care? 2. What is the relevance of nursing’s history to political advocacy today? 3. Describe the role of advocacy within the history of nursing’s development in the United States. 4. Select a community or population with which you could become a full partner in re designing and improving health out - comes to address a contemporary public health issue impacting this community or population, such as access to care, transportation, water safety, pollution, or gun safety. References American Academy of Nursing, Diversity and inclusivity statement . (2016). Retrieved from https://higherlogic download.s3.amazonaws.com/AANNET/c8a8da9e -918c-4dae-b0c6-6d630c46007f/UploadedImages/docs /Governance/2016%20AAN%20Proposed%20Revised %20Diversity%20Statement_FINAL.pdf American Association of the Colleges of Nursing. (2017). American Association of the Colleges of Nursing (AACN) position statement on diversity, inclusion, and equity in academic nursing. Journal of Professional Nursing , 33(2017), 173–174. Retrieved from http:// dx.doi.org/10.1016/j.profnurs.2017.04.003 American Nurses Association. (2010). Nursing’s social policy statement: The essence of the profession (2010 edition). Silver Spring, MD: Author. American Nurses Association. (2015). Code of ethics for nurses with interpretive statements . Silver Spring, MD: Author. ▸ Conclusion The concepts of advocacy and action serve as a reference and model for the future, demonstrat - ing that all nurses can develop their influence and policy acumen to equip themselves with the knowledge and tools needed to serve the profession, healthcare organizations, and soci - ety. As the nursing profession reflects upon its historical roots in advocacy and action, nurses will strive to find innovative ways to advance the nation’s health to reshape healthcare de - livery, policy, and payment. These innovations must address the key social determinants of health that will empower and support all peo - ple to lead healthier lives. Developing competencies in advocacy and action requires a clear understanding of how to create healthier and more equitable communi - ties as well as strengthening health services and systems, creating diverse policy solutions, and building a consensus for evaluating policy solu - tions. For those who are just beginning to learn the advocacy process, it is important to recog - nize that there will always be divergent views around policy solutions, but the best solutions are those where diverse viewpoints are always heard, considered, and reflect consensus. With over 3 million strong, nurses have pro - vided evidence and reasoned solutions to health - care problems. This chapter has addressed how nurses have had a long and vital history of ad - vocacy and social action. It is through this ef - fort towards improving health outcomes for individuals, families, communities, and popu - lations that nurses are a valuable link to educate policymakers about health issues and promote policies to address contemporary public health issues. These issues include public health and emergency preparedness, food safety, hunger and nutrition, climate change and other envi - ronmental health issues, public health infra - structure, disease control, international health, and tobacco control (American Public Health Association, 2017). Fairman and D’Antonio (2013) note that “nurses successes in moving policy forward will 13 References Fairman, J. (2017). Foreword. In S. B. Lewenson, A. M. McAllister, & K. M. Smith (Eds.), Nursing history for contemporary role development. New York, NY: Springer Publishing Company. Fairman, J., & D’Antonio, P. (2013). History counts: How history can shape our understanding of health policy. Nursing Outlook , 61(5), 346–352. Fox, E. (1921). Red Cross public health nursing, out to sea. Public Health Nurse , 13, 105–108. Gibson, M. E. (2017). School nursing: A challenging strategy in rural health care in the United States. In S. B. Lewenson, A. M. McAllister, & K. M. Smith (Eds.), Nursing history for contemporary role development (pp. 37–58). New York, NY: Springer Publishing Company. Harrison, E., & Falco, S. M. (2005). Health disparity and the nurse advocate: Reaching out to alleviate suffering. Advances in Nursing Science , 28(3), 252–264. Hartman, M., Martin, A. B., Benson, J., & Catlin, A. (2013). National health spending in 2011: Overall growth remains low, but some payers and services show signs of acceleration. Health Affairs, 32 (1), 87–99. doi:10.1377/ hlthaff.2012.1206 Hine, D. C. (1989).  Black Women in White: Racial Conflict and Cooperation in the Nursing Profession 1890-1950 . Bloomington, IN: Indiana University Press. Institute of Medicine. (2010). The future of nursing: Leading change, advancing health . Washington, DC: National Academies Press. Keeling, A. (2007). Nursing and the privilege of prescription, 1893–2000 . Columbus, OH: Ohio State University Press. Keeling, A., & Lewenson, S. B. (2013). A nursing historical perspective on the medical home: Impact on health care policy. Nursing Outlook , 61(5), 360–366. http://dx .doi.org/10.1016/j.outlook.2013.07.003 Lathrop. B. (2013). Nursing leadership in addressing the social determinants of health. Policy, Politics, & Nursing Practice, 14 (1), 41–47. http://dx.doi.org./10.1177/15271544 13489887 Lewenson, S. B. (1993). Taking charge: Nursing, suffrage, and feminism in America, 1873–1920 . New York, NY: Garland Publishing. Lewenson, S. B. (2012). A historical perspective on policy, politics, and nursing. In D. J. Mason, J. K. Leavitt, & M. W. Chafee (Eds.), Policy and politics in nursing and health care (6th ed., pp. 12–18). St. Louis, MO: Elsevier Saunders. Lewenson, S. B. (2017, September). Designation 1-A: The African-American experience in the American Red Cross Town and Country, 1912–1918. Paper presented at the American Association for the History of Nursing, Fairport, NY. Martsolf, G. R., Gordon, T., May, L. W., Mason, D. Sullivan, C., & Villarruel, A. (2016). Innovative nursing care models and culture of health: Early evidence. Nursing Outlook, 64(4), 367–376. American Nurses Association. (n.d.). Advocacy . Retrieved from http://www.nursingworld.org/Main-MenuCategories /ThePracticeofProfessional-NursingPatientSafetyQuality /Advocacy.aspx American Public Health Association. (2017). Topics & issues . Retrieved from https://www.apha.org/topics-and-issues American Red Cross Rural Nursing Service. (1912–1914). Circular for application. Rockefeller Sanitary Commission microfilm (Reel 1, Folder 8, Rockefeller Archives). Pocantico, NY: American Red Cross Town & Country Nursing Service. American Red Cross Town & Country Nursing Service. (1913). Minutes of the third meeting of the Committee on Rural Nursing. Rockefeller Sanitary Commission microfilm (Reel 1, Folder 8, Rockefeller Archives). Pocantico, NY: American Red Cross Town & Country Nursing Service. Baer, E. D., D’Antonio, P., Rinker, S., & Lynaugh, J. E. (2001). Enduring issues in American history . New York, NY: Springer Publishing Company. Berkowitz, B. (2017, July–August). Valuing science. Nursing Outlook, 65 (4), 351–352. Birnbach, N., & Lewenson, S. (Eds.). (1991). Work of women in municipal affairs. First words: Selected addresses from the National League for Nursing 1894–1933 . New York, NY: National League for Nursing. Buhler-Wilkerson, K. (2001). No place like home: A history of nursing and home care in the United States . Baltimore, MD: Johns Hopkins University Press. Centers for Disease Control and Prevention. Leading causes of death and numbers of deaths, by sex, race, and Hispanic origin: United States, 1980 and 2014 (Table 19).  Health, United States, 2015 .  Retrieved from https://www.cdc .gov/nchs/data/hus/hus15.pdf#019 Center for Studying Health System Change. (2008, December). Making medical homes work: Moving from concept to practice. Policy Perspective: Insights into Health Policy Issues . Retrieved from http://www.hschange.org/CONTENT /1030/1030.pdf Centers for Medicare & Medicaid. (2015). National health expenditures 2015 highlights. Retrieved from https:// www.cms.gov/Research-Statistics-Data-and-Systems /Statistics-Trends-and-Reports/NationalHealthExpendDate /downloads/highlights.pdf Conway, P. H., Goodrich, K., Macklin, S., Sasse, B., & Cohen, J. (2011). Patient-centered care categorization of U.S. health care expenditures. Health Services Research , 46(2), 479–490. Daley, K. (2012, September–October). Health care as a basic human right. The American Nurse . D’Antonio, P., & Lewenson, S. B. (Eds.). (2011). Nursing interventions over time: History as evidence . New York, NY: Springer Publishing Company. Dock, L. L., Pickett, S. E., Clement, F., Fox, E. G., & Van Meter, A. R. (1922). History of American Red Cross nursing . New York, NY: Macmillan. 14 Chapter 1 Nursing’s History of Advocacy and Action U.S. Department of Health and Human Services Health Resources and Services Administration. (2013). The U.S. nursing workforce: Trends in supply and education. Bureau of Health Professions, National Center for Health Workforce Analysis. Retrieved from http://bhpr .hrsa.gov/healthworkforce/reports/nursingworkforce /nursingworkforcefullreport.pdf U.S. Department of Health and Human Services. (2006). The rationale for diversity in the health professions: A review of the evidence . Retrieved from http://bhpr.hrsa.gov /healthworkforce/reports/diversityreviewevidence.pdf U.S. Department of Health and Human Services. (2010). The registered nurse population: Findings from the 2008 National Sample Survey of Registered Nurses . Rockville, MD: Author. U.S. Department of Health and Human Services. (2013a). Health equities and disparities. Office of Minority Health. National Partnership for Action to End Health Disparities. Retrieved from http://www.minorityhealth.hhs.gov /npa/templates/browse.aspx?lvl =lvlid =34 U.S. Department of Health and Human Services. (2013b). Foundation health measures: Disparities. HealthyPeople. gov. Retrieved from http://www.healthypeople.gov/2020 /about/disparitiesAbout.aspx U.S. Department of Labor. (2014). Labor force characteristics by race and ethnicity, 2014. Retrieved from http://www .bls.gov/opub/reports/race-and-ethnicity/archive/labor -force-characteristics-by-and-ethnicity-2014.pdf Villarruel, A., Bigelow, A., & Alvarez, C. (2014). Integrating the 3Ds: A nursing perspective. Public Health Reports , 2(129), 37–44. Wald, L. (1915). The house on Henry Street. New York, NY: Henry Holt & Company. Zolnierek, C. (2012). Speak to be heard: Effective nurse advocacy. American Nurse, 7 (10), 1. Miller, W. R., Lasiter, S., Bartlett Ellis, R., & Buelow, J. M. (2015). Chronic disease self-management: A hybrid concept analysis. Nursing Outlook, 63 (2), 154–161. Nickitas, D. M., & Ferguson, S. (2017). Investing in nursing: Improving health, gender equality, and economic growth. Nursing Economics, 35 (4), 158, 183. Orszag, P. R. (2008). The overuse, underuse, and misuse of health care. Testimony before the U.S. Senate Committee on Finance. Retrieved from http://www.cbo.gov/sites /default/files/cbofiles/ftpdocs/95xx/doc9567/07-17 -health-care_testimony.pdf Peltzer, J. N., Ford, D. J., Shen, Q., Fischgrund, A., Teel, C. S., Pierce, J. Jamison, M., & Waldon, T. (20153, March–April). Exploring leadership roles, goals, barriers among Kansas registered nurses: A descriptive cross-sectional study. Nursing Outlook, 634 (2), 117–123. Phillips, J., & Malone, B. (2014). Increasing racial/ethnic diversity in nursing to reduce health disparities and achieve health equity. Public Health Reports , 2(129), 45–50. Pitt-Mosley, M. O. (1996). Satisfied to carry the bag: Three black community health nurses’ contributions to health care reform, 1900–1937. Nursing History Review , 4, 65–82. Rice, E., & Betcher, D. (2010). Palliative care in an acute care hospital: From pilot to consultation service. MEDSURG Nursing , 19(2), 107–112. Robert Wood Johnson Foundation. (2015). From vision to action: Measures to mobilize a Culture of Health. Princeton, NJ: Author. Selanders, L. C., & Crane, P. C. (2012). The voice of Florence Nightingale on advocacy. Online Journal of Issues in Nursing , 17(1) Manuscript 1. Smith, M. C. (1995). The core of advanced practice nursing. Nursing Science Quarterly , 8, 2–3. U.S. Census Bureau. (n.d.). American FactFinder. American Community Survey. 2014–2015. Retrieved from http://www.census.gov/programs-surveys/acs 15 References a medical provider or self-exams, are no longer recommended. (American Cancer Society, 2015) Therefore, women should have mammograms as desired or as suggested by their healthcare provider based on their personal medical history and risk factor(s). This relies on the fact that a person has health insurance that covers these costs or is able to go to a free or reduced cost clinic such as Planned Parenthood (PP) for health care and screenings. Planned Parenthood and other clinics rely on funding from the federal government to assist in the costs for these services. Planned Parenthood follows the recommendations of the American Cancer Society regarding breast self-exam and can refer a person to a medical site where mammograms are done as needed. Planned Parenthood may be the only option for a woman to receive the necessary care for a breast cancer screening referral. However, if the U.S. Congress decides to reduce or completely remove funding to Planned Parenthood, what will those women do for breast cancer screening? Congress assesses what monies will go to what groups and establishments based on a number of factors, including what is the agenda of the president and Congress at the time, what is beneficial for and needed by certain congressional districts, and other special interests. According to the American Public Health Association (APHA) (2017) and other websites, the federal government does not directly fund Planned Parenthood, but rather reimburses states that have paid Medicaid bills for services by such clinics as Planned Parenthood.

According to their annual report in 2015–2016, Planned Parenthood received 41% of their operating costs from government health services reimbursement and grants. With a portion of this money, Planned Parenthood did 321,700 breast exams and diagnosed 72,012 incidences of cancer through breast exams and Pap smears. If PP did not have this funding, these numbers would probably be much lower because some women would not have this care due to the inability to pay for it. For the past few years there has been a rolling debate about healthcare access and whether the federal and/or state governments will fund the health care needed by the working poor and uninsured who may not have the funds to pay for a mammogram. Initially, it seemed as though CASE STUDY Strength Is in Coalitions Pennie Sessler Branden Purpose of the Case Study The purpose of this case study is to describe an exemplar where nursing advocacy can be more effective through strong coalitions and partnerships.

The Case Study Breast cancer is the second most common form of cancer in women and is the second leading cause of cancer deaths. According to the American Cancer Society (ACS) (2017) breast cancer will affect 1 in 8 women during their lifetime and about 1 in 37 women will die of breast cancer. The statistics show that women of color and those in poverty have a higher incidence of breast cancer than white middle- and upper-class women. Breast cancer screening has been utilized to diagnose breast cancer early enough to improve the treatments, interventions, and outcomes for breast cancer. With 90% of registered nurses (RNs) being female, the American Nursing Association (ANA) (American Nurses Association, n.d.) has educated nurses to better understand breast cancer risk factors and the importance of regular screening. Nurses and other healthcare providers look to the ACS recommendations for mammogram schedules. These recommendations have gone through a number of permutations, but since 2015 the American Cancer Society recommendations state: Women with an average risk of breast cancer—most women—should begin yearly mammograms at age 45. Women should be able to start the screening as early as age 40, if they want to. At age 55, women should have mammograms every other year—though women who want to keep having yearly mammograms should be able to do so. Regular mammograms should continue for as long as a woman is in good health. Breast exams, either from 16 Chapter 1 Nursing’s History of Advocacy and Action CASE STUDIES have recognized the importance of building partnerships and coalitions in order to maximize their efforts and have deliberately partnered with groups and organizations that support the many issues that nurses support. If Congress is only looking at the cost of care given by Planned Parenthood clinics we must look at the entire picture of cost of preventive care versus the cost of breast cancer treatment. With these statistics, one would think that breast cancer screening, which can reduce cost and suffering, would be covered by insurance. The Affordable Care Act (ACA) covers an annual mammogram, as do most insurance companies as mandated by the ACA. The average cost for a mammogram is $456 (MDsave, 2018). According to a retrospective analysis by Blumen, Polkus, and Fitch (2016), the costs of complete breast cancer treatment for 1 year were from $60,637 for Stage I/II treatments up to $134,682 for Stage IV treatments. Not only will there be costs for breast cancer care but there will be potential loss of wages affecting partners and families in addition to an immeasurable psychologic toll. This huge disparity in costs for preventive mammograms and the overall cost for treatment seems to emphasize the importance of preventive care over the need to wait and treat women who get breast cancer. However, with the potential changes in the ACA and the current unemployment and underemployment numbers, what happens to those women who cannot afford the cost of a mammogram or the cost of insurance?

Blumen and colleagues (2016) report that support for programs for breast cancer screening need to be implemented and strengthened to diagnose breast cancer and begin treatment earlier. With all of the political wrangling that occurs over the health and well-being of women, nurses have become advocates for these issues, and with their coalition partners have taken to Capitol Hill to educate their representatives and senators about the importance of healthcare coverage to include things like breast cancer screening. To accomplish this, (1) nurses will continue to educate their colleagues, patients, and families; (2) nurses will continue to meet with their representatives on the state and federal levels; (3) the ANA will continue to write position statements and nurses will testify in front of legislators; and (4) nurses need to bring real stories to their legislators about women with breast cancer who have benefitted from healthcare the Affordable Care Act (ACA) would reduce these disparities, and it has. However, some state governments have found ways to reduce the potential advantages that the ACA offers. For example, in New Jersey (NJ ), Medicaid funding for clinics that gave patients family-planning and well-women care along with referrals for mammograms was completely eliminated by Governor Christie in 2010 (Culp-Ressler, 2015).

Christie vetoed those spending bills five times in 5 years. Consequently, between 2010 and 2015, there was a 25.1% increase in breast and cervical cancer cases in Latina women in New Jersey. This was five times higher than women overall in that state (Culp-Ressler, 2015). Clearly the elimination of this funding has affected and will affect overall screening and care of vulnerable groups unable to pay for these expensive services. Contrary to this, a mid-July 2017 article by Brodesser-Akner reports that NJ legislators have enough votes with Democrats and Republicans together to override a governor’s veto for $7.5 million for funding to family-planning clinics, including Planned Parenthood. They believe that the previous vetoes have significantly reduced opportunities for NJ women to obtain necessary health care and that this funding is integral to improving the health of all NJ women. New Jersey is just one example of the ongoing divisiveness that has taken place over the funding of family planning and women’s health clinics by state and federal governments.

This is not a new debate but one that has been in discussion for decades. The American Public Health Association (APHA) published a policy statement in 1991 emphasizing that minority women are at higher risk of death from breast cancer than white women and that education and regular screening are integral to the efforts of healthcare providers to reduce the occurrence of breast cancer and to improve overall outcomes.

Even with this data-driven information, the federal government currently wants to eliminate funding to Planned Parenthood, thus potentially reducing access to breast exams and early detection of breast cancer for the millions of women who utilize these clinics annually. Nurses have been involved in lobbying efforts to better educate and assist our representatives to understand the importance of breast screening for all women regardless of socioeconomic status. Further, nurses Case Study 17 CASE STUDIES Summary This case study is one relevant example of the potential for possible negative outcomes related to decreased funding by governmental agencies; it also delineates the potential positive outcomes that are achieved with partnering, collaboration, and coalition building. Even though the issue of continued funding for Planned Parent clinics is not addressed directly, successes can be made incrementally that will increase support of important healthcare programs moving forward. Advocacy, in order to influence policy, is best operationalized through partnerships, collaboration, and coalitions. Although someone in power, such as Governor Christie, can veto a bill to reduce funding to a particular group, the representatives in the New Jersey legislature can introduce bills that can, with a bipartisan majority, override a veto by the governor. Similarly, the Connecticut Nurses Association maximizes its efforts through collaborating and partnering with various groups to form strong influential coalitions that can educate legislators about all of the pieces of breast cancer prevention and care.

The combined efforts, along with the increased numbers of individuals actively participating in the process, enhances the work of lobbyists, who in turn influence the policymakers. The overall consequence is the increase in the voice of the public that influences the outcomes. This influence enhances the possibility of providing more adequate healthcare services to all citizens.

Case Study Questions 1. This case is a good example of nursing power through building partnerships and coalitions that have similar missions. Can you identify two coalitions that your state nursing association actively works with? Can you describe the policy issues that these coalitions address? 2. Successful advocacy is best defined as moving toward the ultimate goal(s) in a positive, substantive manner. Explain what advocacy you have done, besides direct patient advocacy, to support health care in your nursing specialty. References American Cancer Society. (2015, October 20). American Cancer Society releases new breast cancer guideline. Retrieved from access and insurance, as well as stories where a person suffered due to lack of access and/or insurance. Nurses will continue to advocate for their patients and what is best for them by enlarging their reach through coalitions and partnerships.

The Connecticut Nurses Association (CNA) is guided each year by their Connecticut (CT ) legislative agenda and their prioritization of issues, which is informed by nurses and their relationships and partnerships with organizations across the healthcare and health spectrum.

The CNA regularly engages in advocacy on health and nursing throughout the year and during the legislative session. To address the widespread impact of healthcare reform, the CNA is actively involved in the campaign entitled Protect Our Care CT (PCCT ) (Connecticut Nurses Association, 2017). PCCT represents a coalition of organizations and individuals to support and represent the health needs of people of CT, including those who rely on the ACA, Medicare and Medicaid, and women’s health programs (personal interview Clear Sandor, 2017). For example, the CT Senate Bill 586 supported state Medicaid expansion of health benefits for children and women (State of Connecticut General Assembly, 2017). There is a long history of CNA’s active participation in the state regarding access to essential services and their partnership with other groups and coalitions; the CNA has supported this bill for increased essential benefits and access to care and members have been very vocal about this to their legislators through lobbying efforts, letters, etc. Although the bill does not increase funding for or access to breast screening mammograms, it does mandate breast cancer counseling, genetic testing, and risk assessment. In the future this bill could be expanded to include mandated mammograms no matter what a person’s insurance status is. This is an example of the impact of indirect action by multiple groups, including nurses, in strong coalitions. The CNA works collaboratively with its coalitions to strategically exert its influence and increase its voice on multiple healthcare issues that affect women. Coalition building is a key piece of being heard and getting legislation passed. Coalitions have provided nurses with a strong voice and enhanced their ability to provide high-quality, safe care.

18 Chapter 1 Nursing’s History of Advocacy and Action CASE STUDIES http://www.nj.com/politics/index.ssf/2017/07/christie _facing_open_rebellion_as_gop_lawmakers_vo.html Connecticut Nurses Association. (2017). CT coalition to advocate for health coverage . Retrieved from http://cqrcengage .com/ctnurses/home Culp-Ressler, T. (2015, February 26). The human costs of Chris Christie’s attack on Planned Parenthood . ThinkProgress. Retrieved from https://thinkprogress.org/the-human -costs-of-chris-christies-attack-on-planned-parenthood -b565d0bd790d MDsave Incorporated. (2018). How much does a mammogram screening cost? Retrieved from https://www.mdsave .com/procedures/mammogram/d786fcc5 Personal interview: Kimberly Clear Sandor. (August 1 and 9, 2017).Planned Parenthood (2017, July 26). Annual Report 2015-2016. Retrieved from https://www.plannedparenthood.org /uploads/filer_public/18/40/1840b04b-55d3-4c00-959d -11817023ffc8/20170526_annualreport_p02_singles.pdf Reger, A. (2015, September 23). State statutes on breast cancer screening and coverage. Connecticut Office of Legislative Research Research Report 2015-R-0210. Retrieved from https://www.cga.ct.gov/2015/rpt/pdf/2015-R-0210.pdf State of Connecticut General Assembly. (2017, January). Senate Bill No. 586 . Retrieved from https://www.cga .ct.gov/2017/TOB/s/2017SB-00586-R01-SB.htm https://www.cancer.org/latest-news/american-cancer -society-releases-new-breast-cancer-guidelines.html American Cancer Society. (2017). About breast cancer. Retrieved from https://www.cancer.org/content/dam/CRC/PDF /Public/8577.00.pdf American Nurses Association. (n.d.). Women’s health . Retrieved from https://www.nursingworld.org/practice-policy/work -environment/health-safety/healthy-nurse-healthy-nation /womens-health/ American Public Health Association. (2017). Cervical and breast screening. Retrieved from https://www.apha .org/policies-and-advocacy/public-health-policy -statements/policy-database/2014/07/29/13/51 /cervical-and-breast-screening Blumen, H., Polkus, V., & Fitch, K. (2016, February) Comparison of treatment costs for breast cancer, by tumor stage and type of service. American Health & Drug Benefits for Payers, Purchasers, Policymakers, and Other Healthcare Stakeholders , 9(1). Retrieved from http://www .ahdbonline.com/articles/2076-comparison-of-treatment -costs-for-breast-cancer-by-tumor-stage-and-type -of-service Brodesser-Akner, C. (2017, July 12). Christie faces rebellion from 5 Republican lawmakers over Planned Parenthood funding. Advance Media for New Jersey. Retrieved from Case Study 19 CASE STUDIES in politics, which she defines as “public service,” is her early commitment to caring for the homeless in community health nursing, which became the foundation of her academic career: to understand policy and serve “the many.” She attributes her incremental successes, beginning from the day when she was late to her graduate school class, to being coached by mentors such as Catherine Malloy in Charleston, South Carolina, with whom she continued to work throughout her doctoral program in nursing administration and policy at George Mason University. Using what she learned from her study of health policy, she became active in her local city government and organizations such as the League of Women Voters and a federal health clinic that served the homeless. In these experiences, public policy was “made real” and prompted her continued volunteer service in other nonprofit organizations. She claims that she learned from working with these groups that as nurses, we do not have to stay in our lane of just working with other nurses.

She learned how to organize, to use her health knowledge to work for things that people care about, and to build coalitions of groups for action.

She says that a leader at the League of Women Voters told her that she “had what it takes—drive, personality, and skills—to think about running for office,” which she tucked away at that time. With her husband in the military at the time, she moved to Washington D.C. Entering the doctoral program, still moonlighting as a nurse, she continued to grow into real public policy experiences that were fueled by taking care of homeless veterans and at-risk populations. To make a real impact, she believed that we had to elect nurses who could make a difference, but she realized she needed experience to be taken seriously. Along the way, it was nurse mentors who connected her with Capitol Hill opportunities on an assignment that would influence a dissertation and numerous other connections, including Bob Dole and Ted Kennedy from a U.S. Senate Committee. While a student, she served as a U.S. Senate Fellow and a U.S. Department of Health and Human Services policy analyst for the Secretary’s Commission on Nursing. In her own words, she was not afraid to pick up the phone, encouraged by her mentor, and ask if the national commission studying the nursing shortage needed a policy graduate student—for CASE STUDY A Career in Politics to Role Model:

Bethany Hall-Long’s Nursing Pathway to the Lieutenant Governor’s Office in Delaware Veronica D. Feeg A career in politics might be the aspiration for a college student in political science or pre-law, but is seldom one for a nursing student. In fact, courses in health policy or politics may be absent or scarce in nursing undergraduate or graduate curricula, and the notion to become active in politics is unlikely. In fact, Bethany Hall-Long, first woman Lieutenant Governor of Delaware, would be the first to admit that it was not in her plans in the beginning of her personal journey. In fact, she attributes her current position, stated with candor in her numerous inspirational presentations to nurses over the years, to her tardiness for class when the only seminar topic left for students to choose was about nurses in politics—and she was “stuck with it” (personal interview Hall-Long, 2017). Although she only learned after she won her first race in 2002 that her great-grandfather had been a member of the Delaware House of Representatives, she had little kitchen table discussion about politics growing up. In fact, her farm upbringing and spiritual roots in rural Delaware taught her about taking care of people— “where much is given, much is expected, and it is how you treat the least among us” (personal interview Hall-Long, 2017)—but not about public policy. What is noteworthy in this model career 20 Chapter 1 Nursing’s History of Advocacy and Action CASE STUDIES issues that matter to nurses—jobs, environment, transportation, and environmental justice, as well as health care in general and women’s health in particular. Returning as a faculty member to Delaware, her home state, she decided that her public health and health policy student assignments gave her reasons to run because:

(a) she desired to make a significant contribution; (b) she had been well prepared to understand process and as a nurse, she already understood the needs; and (c) the opportunity presented itself to run for the Delaware General Assembly. In her own words, her public life since 2000 did not begin smoothly—she won the primary but lost her first race by 1% in a race against a long-term male incumbent. But she says that she learned from that experience, pulled herself up by her bootstraps, ran again in 2002, and won in a tough election against the local school board president. She served continuously as the first nurse elected to the Delaware General Assembly from 2003 to 2017, as a member of the Delaware House of Representatives from 2003 to 2009, and then in the Delaware Senate from 2009 to 2017. She lists among her accomplishments cosponsoring a range of legislation including the Governor’s Cancer Council and the Health Fund Advisory (Master Tobacco Settlement) Committee. She was the prime House sponsor of legislation creating a cancer consortium for Delaware. She cosponsored a blue ribbon task force to analyze the problem of chronic illness in Delaware and make policy recommendations. She cosponsored needle exchange legislation that has made an impact on HIV infection rates, and she updated the state’s indoor tanning laws to prohibit children under age 14 years from using tanning beds and for those age 14 to 18 years to require parental consent (Hall-Long, 2007, 2012).

Among her legislative accomplishments during her Senate years, she chaired several important committees including health care, community and county affairs, transportation committee, veterans committee, and insurance committee, among others, where nurses can play a significant role. Her political campaigns and subsequent elections over these years are remarkable (see TABLE 1-1), but she acknowledges that it is not easy to run for office. She describes “running” for office as just that: experiences good and bad teach us how to continue on a path if we are passionate free. This opportunity gave her access to the four presidents of the Tri-Council for Nursing (American Nurses Association [ANA], National League for Nursing [NLN], American Association of Colleges of Nursing [AACN], and American Organization of Nurse Executives [AONE]) at age 25. She grew friendships and experience that laid the framework for her dissertation. Lt. Governor Hall-Long’s doctoral dissertation is noteworthy: A Policy Process Model: Analysis of the Nurse Education Act (NEA) of 1991–1992. Along with her work in politics, she studied the policy process, knowing clearly that public service mandates an understanding of public policy. This exploratory case study examined a theoretical model and applied it to explain the Tri-Council for Nursing’s political efforts during the reauthorization of the Nurse Education Act that year. She interviewed members of the Tri-Council for Nursing, U.S.

Division of Nursing, and U.S. Congressional staff, and examined 75 public documents and records as secondary sources of data. Her findings supported the conceptual categories and organization of the model and its ability to discern differences among political actors and corresponding policy stages. This grounding and depth of understanding would serve her well in her subsequent political journey, recognizing fully that in order to improve services or make substantial change for the health of constituents, one needs to know the underlying policy and politics that are successful. Over these years, she became active with the Democratic Party, working on political campaigns and serving to connect with nonprofit organizations and groups. She worked on community issues that were important and continue today: homelessness, housing, jobs, economic opportunity, and women’s and children’s issues, particularly infant mortality prevention through improving access for disadvantaged young mothers. She developed relationships in the community and in politics. She says that it was working with Mark Warner, who became Governor of Virginia and is currently a U.S. Senator, that she got her grassroots experience on the campaign trail together. She believed that she could enlighten and inform policymakers who do not understand nursing or health care. To most politicians, nurses are all the same and she was determined to be at the table to educate about Case Study 21 CASE STUDIES grew up in a rural household, she is a descendent of Delaware’s 15th governor, so it might have been her destiny to have a life in politics. She serves as the President of the Senate, a legislative body she has known for 8 years. As Lieutenant Governor she is proud to be able to influence the policy agenda in some roles and serve the state in her leadership role in moving systems issues such as health reform, workforce training, and mental illness. The political career of Bethany Hall-Long should be an inspiration for nurses who are dissatisfied with the status quo and passionate about making change to serve the needs of individuals who are disadvantaged. Her message to nursing students and professional nurses is that they should not leave policy making and governing to men in closed rooms anymore; they should seek out ways to influence and consider running for office. She attributes her passion and strength to her grandmother with an 8th grade (Hall-Long, 2007, 2012). She loves meeting people on the campaign trail and she believes that being a nurse gets her past the doorbell when going door to door in a race because people can instantly relate to you. She believes that her communication skills come directly from her nursing experience and her connection with the community. She encourages nurses to think beyond healthcare committees—to recognize that we are good at solving problems that may be outside our usual reach, and there is no limit to the list of public policy problems that we can tackle, including, but not limited to, childhood sports activities, palliative care, or opioid addiction, depending on our clinical expertise and interests. In January 2017, Bethany Hall-Long became the 26th Lieutenant Governor of Delaware. Her understanding of the policy process model that she developed in her dissertation continues to serve her well, and she notes that, although she Compiled from State of Delaware general election official results. (November 7, 2000; November 5, 2002; November 2, 2004; November 7, 2006; November 4, 2008). Dover, DE: Delaware Commissioner of Elections.

TABLE 1-1 Chronology of Bethany Hall-Long Elections Year Campaign/Election Outcome 2000 Ran against Republican Representative incumbent Richard Cathcart for District 9 seat. Lost 2002 Redistricted to District 8; ran unopposed in Democratic primary and against Republican nominee William Hutchinson in general election. Won (60.7%) 2004 Ran unopposed for Democratic primary and in general election. Won 2006 Ran unopposed for Democratic primary; ran against Republican nominee Edward Colaprete in general election. Won (77.0%) 2008 Ran unopposed for District 10 Senate seat; ran against Republican nominee James Weldin in general election. Won (64.9%) 2012 Incumbent; ran unopposed for Senate seat; ran unopposed in general election. Won 2016 Ran against Republican La Mar Gunn in Lieutenant Governor race. Won (59.4%) 22 Chapter 1 Nursing’s History of Advocacy and Action CASE STUDIES backgrounds that help them seek a public service life? 3. How can a political career unfold synergistically with a nurse’s ambition to run for political office? 4. Why is “running for office” described by politicians as a challenging personal experience? References Hall-Long, B. (2007). Vignette: farmgirl, nurse and legislator: My journey to the Delaware General Assembly. In D. J. Mason, J. K. Leavitt, & M. W. Chaffee (Eds.), Policy and politics in nursing and health care (5th ed, pp. 720–723). St. Louis, MO: Elsevier Saunders. Hall-Long, B. (2012). Chapter 17: Taking action: nurse, educator and legislator: My journey to the Delaware General Assembly. In D. J. Mason, J. K. Leavitt, & M. W. Chaffee (Eds.), Policy and politics in nursing and health care (6th ed, pp. 579–582). St. Louis, MO: Elsevier Saunders. Hall-Long, B. (1993). A policy process model: Analysis of the Nurse Education Act of 1991–1992. Dissertation at George Mason University, Fairfax, VA. University of Michigan, Ann Arbor, MI. Personal interview: Bethany Hall-Long. (February 20, 2017). education who vociferously advocated that women should be well educated. Lt. Governor Hall-Long’s advice to those with aspirations to impact “the many” is to get prepared, study the policy process, and become experienced in ways to communicate with all types of stakeholders on the issues, from classrooms to boardrooms to community involvement. Volunteer and do not be intimidated. This public servant, from rural roots to a nursing graduate education that includes a PhD, brought her passion for people and her skills in community nursing to the State House in Delaware, second to Governor Carney, and still has gas in the tank to go farther. Her career story should inspire other nurses—who she claims already have the skill set and knowledge to work with people—to pursue public service in the political arena so that the most vulnerable among us can be heard.

Case Study Questions 1. Which of Lt. Governor Hall-Long’s list of nursing accomplishments played a role in her journey in politics? 2. What knowledge and characteristics are natural components of nurses’ professional Case Study 23 CASE STUDIES © Anthony Krikorian/Shutterstock Policy and Politics Explained Nancy Aries OBJECTIVES ■ Define policy (generally) and health policy (specifically). ■ Explain the role of the market and the government in framing policy. ■ Describe the policy-making process, including:

• Competing concepts of federalism that create the structure within which policy is determined • Opposing interests and their influence on policy outcomes • Policy formation and the policy making • Policy implementation and its ramification for future action ■ Identify different approaches to influence and shape policy and programmatic outcomes that can be used by healthcare advocates. OVERVIEW Nurses and other healthcare professionals must understand how the government, providers, insurers, and consumers interact in the health policy process. This chapter provides an overview of the essential cornerstones that drive the policy-making process and shape the organization and delivery of health care in the United States. By understanding the framework within which policy is made and the politics of policy making and program implementation, all healthcare professionals, regardless of where they perform their duties, will be better prepared to advocate for a healthcare system that best meets the population’s needs. 25 CHAPTER 2 ▸ Introduction The Patient Protection and Affordable Care Act (ACA), also known as “Obamacare,” was signed into law in 2010. Since 2013, the number of Amer - icans without health insurances has dropped from 41  million to a low of 28.5  million, or 10.5% of the population (Kaiser Family Foundation [KFF], 2016). As a result, more people are accessing care, and health outcomes show improvement (Peter - son Center on Health Care and Kaiser Family Foundation [PCHC-KFF], 2017). Also, the rate of healthcare spending has slowed ( McMorrow & Holahan, 2016). Despite these successes, there is a tremendous divide in political opinion about the ACA. President Trump made the repeal of Obamacare a cornerstone of his political agenda.

As the U.S. Senate considered repealing and re - placing the law in July 2017, 50% of adults were favorable, and 44% were unfavorable (KFF, 2017).

How can facts lead to such divergent understand - ing of whether the legislation has been success - ful or not? It suggests significant disagreement in our understanding of the government’s role in helping to shape the organization, delivery, and financing of health care. This chapter explains the purpose of gov - ernment in the policy and policy-making pro - cess as a first step to providing the necessary tools to those who want to influence the organization and delivery of care. The first section of the chap - ter expands on the definition of policy as gov - ernment actions that advance the well-being of society and considers how policy shapes our ex - perience of the healthcare system. When health care works, it is often the result of policies that enable it to succeed. When there is a failure, it can also be the case that policies have created an environment in which it is difficult to operate. The second section of this chapter highlights the different ways government policy and pro - grams intervene in the organization and delivery of health services to assure greater social equity in the access to affordable and high-quality health care. The choice of tools is determined by the balance established between the market and the government in overseeing the organization of healthcare delivery. Although the United States operates under a mixed system, the market and the government each present a different set of opportunities and constraints for policymakers. The remaining sections start with an exam - ination of the changing concepts of federalism or the role of the federal versus state governments.

The federalist framework within which policy is constructed is essential as it determines under whose jurisdiction healthcare policy falls. Once the dynamism of this relation is clarified, the actual programmatic tools the government uses to achieve its goals is explored. The policy-making process is explained in the following section.

The groups that have a stake in the development of public policy and programs are reviewed, as are the issues about which they are most con - cerned. From there, the chapter explains the dif - ferential influence of interest groups and their ability to shape the decision-making process to achieve what they perceive to be more favorable outcomes. This chapter does not explain legisla - tive procedures; that is better left to a civics text.

Rather, this chapter explains the points at which decisions are made and the political dynamics of decision making. The final section brings the discussion back to the nurses and health - care professionals for whom this text is written.

A better understanding of policy helps explain the experiences of those seeking and providing health care. It also provides a framework for un - derstanding how healthcare professionals can be more effective players within the policy-making process and have greater influence as a result.

▸ Policy Defined:

A Framework for Government Action Policy in the broadest sense is the manifestation of ideology or belief systems concerning pub - lic purpose (Weissert & Weissert, 2012). Public purpose refers to actions that benefit the popu - lation as a whole. Public policy, the term used to describe government action, is typically divided 26 Chapter 2 Policy and Politics Explained into three areas: foreign policy, economic policy, and social policy (Lowi & Ginsberg, 1998). The objective of foreign policy is to defend national sovereignty. Economic policy is designed to pro - mote and regulate markets. Foreign and economic policy both seek to promote the political and eco - nomic well-being of American society, but policies in these areas do not have equal impact on all sec - tors of society. Some groups may benefit, whereas others might suffer undue consequences. For ex - ample, the North American Free Trade Agree - ment benefited the overall economy, but many Americans who held manufacturing jobs were laid off as production moved from the United States to countries with lower production costs.

Social policy often becomes the means by which these unintended consequences are addressed.

Through government actions, the provision of the basic necessities—food, shelter, health care, and education—are assured ( Midgley & Livermore, 2008). Social policy, therefore, is redistributive by its very nature. Its goal is to advance social equity. Health policy exists within the larger realm of social policy. Because policy is rooted in social values and ideologies, the discussion of health policy begins with the recognition of the val - ues and ideologies upon which the organization of the healthcare system is based. The historic course of American health policy is best de - scribed regarding shifting beliefs about access to care. Sometimes we stridently pursue health care as a right and look for ways to make ser - vices more readily available. Sometimes we treat health care as a privilege and look to individu - als to take responsibility for their care (Knowles, 1977). These competing values (i.e., a right ver - sus a privilege) are simultaneously and contin - ually at work. The assumed trajectory has been towards redistributive justice, but that is cur - rently under critical scrutiny. Until the Great Depression, ethnic and reli - gious communities assumed primary responsi - bility for providing social and economic support to persons in need of assistance. That responsi - bility shifted to the federal government in the 1930s (Kernell & Jacobson, 2006). The Social Se - curity Act of 1935 included economic support for the elderly, financial and social support for poor children, and limited health care for moth - ers and children. Its goals were further advanced by President Lyndon Johnson’s War on Poverty, whose healthcare initiatives included Medicare and Medicaid. Medicare, which covers practically all Americans older than age 65, was deemed a right. It is a universal entitlement because it makes health services available to a defined population regardless of ability to pay. Such programs tend to be expensive because they are all inclusive, but they also tend to have broad political support because everyone can expect to receive the pro - gram’s benefits (Brown & Sparer, 2003). In con - trast, Medicaid makes health benefits available to distinct groups of low-income persons, which initially included families receiving public assis - tance, the disabled, and some older persons. States determine the specific eligibility cutoff as well as covered services. Medicaid is labeled a selective program because of the limits on eligibility. A re - sult is that it enjoys less political support. First, it serves needy populations whose claim to services is often considered questionable, and second, its level of service can be greater and less expensive than the services received by persons whose in - comes are slightly above the cutoff. Passage of the ACA represented the next ma - jor effort to expand access to affordable health care. It was passed in response to the rising num - ber of uninsured that resulted in part from rap - idly increasing healthcare costs that led to high out-of-pocket costs for individual policies as well as deductibles and coinsurance. The goal of en - suring that all Americans had access to afford - able health insurance is difficult to achieve given differing ideas about rights and privileges. The ACA settled on a plan that combined expanded access to Medicaid and a combination of sub - sidies for individuals up to 200% of the federal poverty level and tax credits for individuals up to 400% of the federal poverty level. Although the ACA made health insurance more afford - able to a large number of individuals, a third of individuals whose family incomes were greater than 200% of poverty reported that health insur - ance remained out of reach financially (Collins, Policy Defined: A Framework for Government Action 27 Marriott entered the senior housing market in response to this demand. This market-based solution, however, is limited to elderly consum - ers with sufficient purchasing power to afford Marriott’s products. For others, a government solution may be needed. Business can also in - fluence consumer healthcare market behavior.

The direct marketing of pharmaceuticals through television, print, and electronic advertising is in - tended to inform and direct consumers towards possible remedies for their health conditions. As these two examples make clear, a fun - damental problem with market-based solutions is their inability to respond when affordability determines what can be purchased. Those who cannot afford essential goods and services must do without. However, what about services that ensure individual welfare, such as lifesaving, but expensive, surgery? In these cases, the market is almost always inadequate. It fails to assure dis - tributive justice because it is premised on the unrealistic assumption that the transaction is an exchange among equals. Such an exchange is not possible in a society with an unequal dis - tribution of income (Arrow, 1963). These are the situations where government intervenes (Stone, 2012). The government’s role is necessitated by this fundamental tension be - tween the economic organization of the produc - tion and the distribution of goods and services and the social value of distributive justice. The market, left alone, tends to pull in the direction of economic inequality, but political beliefs de - mand a counterbalance regarding the distribution of rights and opportunities. The government be - comes the counterbalance for persons who can - not provide for themselves through the market exchange of goods and services (Arrow, 1974).

Through its policies and programs, the govern - ment provides for those who cannot fully par - ticipate in the market. It is this mechanism by which a society seeks to achieve greater equal - ity. Its policies and programs are redistributive, which means that its actions are intended to benefit those who cannot care for themselves or may suffer losses given their inability to pur - chase needed goods and services in the market. Gunja, Doty, & Beutel, 2017). The challenge posed by cutoffs is that the ACA has been nei - ther as successful as those who called for greater government intervention anticipated nor as costly as those who called for no government intervention suggested.

Markets versus Government The premise of direct governmental respon - sibility for the care of dependent populations, settled during The New Deal launched by Presi - dent Franklin D. Roosevelt in 1933, has been re - opened after eight decades. Rather than looking to government to secure social welfare, there is a growing desire in some quarters for govern - ment to retreat from the role of social provider of last resort. This call for smaller government is rationalized by a belief that government re - stricts freedom and the market is capable of meeting individual needs. The terms market and government are shorthand expressions that describe the two ways in which society conducts its business.

Market means reliance on generally voluntary exchanges between private parties. Sometimes these exchanges are mandated and regulated by the government, as in the case of mandatory immunization for school children. Government means reliance on the direct provision of a ser - vice by government employees, as in the case of Veterans Affairs hospitals. It is not uncommon to use a combination of markets and govern - ment, as in the case of Medicare and Medicaid, where the government pays private providers to care for the elderly and poor. Most goods and services, including health care, are acquired through the market. The un - derlying reliance on the market as the arbiter of who gets and who does not get is based on a be - lief that market outcomes best serve individuals and, by extension, enhance the collective good.

Consider the housing market’s response to an aging population’s need for supportive services.

As the number of persons looking for housing alternatives not readily available in single-family or multiunit dwellings grew, companies such as 28 Chapter 2 Policy and Politics Explained brought this contradiction between the states’ re - sponsibility for the public’s welfare and resources of the federal government to provide for the pub - lic’s welfare into sharp focus. States did not have the financial capability to protect the well-being of their citizens because they had limited ability to raise funds through taxation or deficit financ - ing. One result was a shift from a system of dual federalism to a system of cooperative federalism (Kernell & Jacobson, 2006). The federal govern - ment began to play an essential role in creating and funding social programs. Using grants-in- aid programs, Congress appropriated money to state and local governments with the condition that the money be spent for the particular pur - poses defined by Congress. The Maternal and Child Health Service, whose goal was to improve the health of low-income mothers and children, is such a grants-in-aid program. From a policy perspective, cooperative federalism is necessary because Congress set national goals and guided state activity in the realm of social policy. Again, it is this basis on which the current debate about Obamacare is premised (Krugman, 2017).

Federalism The various concepts of responsibility for health policy are also tied to the American federalist system of government (Bovbjerg, Wiener, & Housman, 2003). When the nation was founded, the states ceded certain responsibilities to the fed - eral government but retained others for them - selves. According to the framers of the U.S.

Constitution, the central government has express powers to levy taxes, declare war, and oversee in - terstate commerce. All power not expressly del - egated to the federal government falls under the jurisdiction of the states. Also, within the fed - eral government, there is a separation of pow - ers among the legislative, executive, and judicial branches. This further constrains the power of the national government by dividing the gov - ernment against itself. Finally, the Constitution limits both the federal and state governments by protecting individual rights that cannot be de - nied except through extraordinary procedures. Federalism refers to this dual system of state and federal governance, which limits the juris - diction of the federal government. This system provides the context in which the patchwork pattern of health policy exists. Although there is a strong national government, the states were initially more important than the federal gov - ernment in virtually all policies governing the lives of Americans, such as economic regulation, public health, and education. When President Franklin Pierce vetoed a law setting aside millions of acres of federal land to benefit the mentally ill, he reasoned that mental health was a state, not a federal, responsibility (Rothman, 1971). Despite individual welfare being defined as a state responsibility, there has been a constant expansion of federal power in this area since the Civil War. While the Constitution gave responsi - bility for individual welfare to the states, the Con - stitution gave the federal government authority to raise taxes for common defense and general wel - fare. The dire need caused by the Great Depression Courtesy of the Library of Congress, Prints & Photographs Division, preproduction number ppmsca 09733. Policy Defined: A Framework for Government Action 29 similar needs being passed at the federal, state, and local levels. Examples of such service gaps and duplication are easily recognized by those who serve older persons. An individual seek - ing long-term care is confronted with myriad programs, including Medicare and Medicaid as well as social service block grants developed un - der both the Social Security Act and the Older Americans Act, and state-initiated programs. In - dividuals must navigate this maze of programs to determine their eligibility for services, while providers must integrate the various funding streams to provide coordinated and compre - hensive services where alignment does not nec - essarily exist. Fragmentation also impacts the ability to create a program of national health insur - ance. Given the dual regulatory system gov - erning health insurance, neither the states nor the federal government could easily mandate employers to offer health benefits because nei - ther governing body has regulatory authority over all businesses in a particular area (Mari - ner, 1996). The ACA amended the federal law to require employers of 50 or more persons to provide health insurance or pay the penalty. The ACA also mandated individuals not covered by the employer mandate to purchase health in - surance. The U.S. Supreme Court upheld the constitutionality of the individual mandate in June 2012 as well as the penalty under the fed - eral government’s power to collect taxes (Jost, 2012). However, the Internal Revenue Service (IRS), in response to the Trump administration’s effort to reduce the burden of the ACA, is not enforcing collection of the individual penalty.

This revenue is used to support the Medicaid expansion and is essential to the financial via - bility of the ACA (Pear, 2017). The loss of rev - enue will further fragment access to services.

Governmental Intervention The government has several tools at its disposal to intervene when the market cannot adequately address a problem (Stone, 2012). Among these are taxation, service provision, and regulation. The federal government assumed an even larger role regarding shaping and funding so - cial welfare programs starting in the 1960s. The expansion of federal authority was in part a re - sponse to civil rights advocates who demanded greater regulation of state implementation of federal programs to achieve racial and social equality. The administration used the regula - tory process to impose national standards on the states (Conlan, 2006). In addition, the federal government created categorical programs that funded community-based providers, bypassing state governments (Davis & Schoen, 1978). The Office of Economic Opportunity’s community health center program is an example of such a categorically funded program. In the late 20th century there was one more shift in the relationship between the federal gov - ernment and the states. Starting with President Nixon, and affirmed during Reagan’s presidency, the push was to return authority to the states.

Initially called the new federalism , it involves the devolution of authority to the states to define the parameters of federally funded social welfare programs (Anton, 1997). The expressed goal is to enable states to accommodate their unique needs better. This is not possible when the fed - eral government is perceived as imposing a one- size-fits-all approach to social programs. Block grants became the mechanism by which greater discretion was given to the states to shape so - cial welfare programs. The block grants essen - tially combine funding from several grant-in-aid programs and allow states to determine how the money will be spent to achieve broad program - matic goals. While early in the Trump presi - dency, the intent is to both shift power back to the states and make government smaller. The varied proposals for replacing the ACA are all premised on massive federal cuts that involve the elimination of the Medicaid expansion, and the devolution of authority to the states to ad - dress the health needs of its citizens. Federalism results in a fragmented system of governance (Steinmo & Watts, 1995). One consequence is the fragmentation and dupli - cation of services arising from laws addressing 30 Chapter 2 Policy and Politics Explained with nonteaching hospitals given the additional costs incurred for resident and faculty salaries and the additional resources used for patients seen by residents. As a result, Medicare funds residents’ salaries, thus subsidizing the hospitals where they train (Institute of Medicine, 2014).

Another example is the orphan drug program.

The government subsidizes pharmaceutical com - panies to research drugs that are used by a small number of persons and are therefore not prof - itable to develop and produce. Through these types of programs, the government encourages program expansion in areas that are not other - wise profitable (McCaughan, 2017). A third programmatic tool is government regulation of the market. Regulations are legal restrictions aimed to produce outcomes that otherwise might not occur. Examples of regu - lation include the licensure of physicians and other healthcare professionals (Grumbach, 2002). These regulations were adopted in the early 20th century as a way to protect the public from unqualified practitioners. Through a series of educational and practice requirements and a series of examinations, states determine who can and cannot provide medical and healthcare services. Another example of government regu - lation is state-mandated nursing-to-patient ra - tios for hospital-based care (Conway, Konetzka, Zhu, Volpp, & Sochal, 2008). These regulations are designed to protect patients by maintaining minimum staffing levels at all times.

▸ The Policy-Making Process The policy process is often described in rational terms as a step-by-step series of decisions and actions that lead to a reasonable outcome. The process begins with agenda setting and contin - ues through policy formulation and adoption, policy implementation, evaluation, and reevalu - ation (Kingdon, 1995). While the process can be broken down into a number of discrete events, the complexity or variance of what occurs is Taxation is often considered the means by which government raises money to support its spend - ing and influence behavior. Many states tax the sale of cigarettes to influence cigarette use (DeCicca, Kenkel, Mathios, Shin, & Lim, 2008).

Higher cigarette taxes have resulted in lower rates of consumption. Medicare Part A, which covers hospital care, is financed by payroll taxes paid by employers and employees. The ACA is funded through multiple sources of taxation, in - cluding the extension of the Medicare payroll tax on high earners and a tax on unearned in - come from taxable interests and dividends, for example. Current bills to repeal the ACA are es - timated to result in tax cuts of over $50,000 to persons earning more than $1  million dollars (Huang & Van De Water, 2017). Another tool is government support of ser - vice provision. In some cases, the government is the actual provider of services. Public hospitals were locally financed institutions organized to serve persons who cannot afford care. The Vet - erans Health Administration is a comprehensive healthcare system supported by the federal gov - ernment for individuals with medical problems resulting from service-related injuries after dis - charge from the service. Alternatively, the gov - ernment can purchase services from the private sector. Medicaid is an example of such a program.

Medicaid enrollees seek services from approved providers whose bills are paid by a combination of state and federal funds. Such spending is de - signed to increase access to the market for per - sons with limited income. The government can also produce and purchase services. This is the case with biomedical research. The National Institutes of Health (NIH) has a large biomed - ical research complex that supports numerous researchers. Also, the NIH funds independent researchers at universities and research labora - tories across the country. The purchase of services may also take an indirect form whereby the government subsi - dizes sellers to participate in markets that might not be competitive based on price. For example, medical education is extremely costly. Hospitals that train physicians cannot compete on price The Policy-Making Process 31 these interests are organized, their policy per - spective, and the influence they wield in shaping what policy is adopted at any particular point in time. In the following section, the primary stakeholders or interest groups in the healthcare arena are identified as well as the changing power of these groups to influence policy outcomes. The American public’s health and well-being is the focus of health policy, but Americans do not speak with a single voice. There is tre - mendous variation in health status by age, socioeconomic status, and racial and ethnic background. As a result, many different organi - zations advocate on the public’s behalf. In each case, they are concerned with enabling the pop - ulation groups they represent to access services that would improve the quality of their lives, including a greater voice in the decisions that affect their health (Schneider, 1998). They want to become active participants in their care. Some organizations support better treatment modali - ties and financing for discrete services, such as the American Cancer Association, the Ameri - can Lung Association, and the National Mental Health Association. Others represent the needs of population-based groups. The largest groups active in policy making represent women, older persons, the disabled, the poor, and racial and ethnic minorities. Typically, the public’s first point of contact with the healthcare system is when they seek services. The organization and delivery of ser - vices can broadly be categorized in terms of two groups: clinicians and the organizations where they work. Their interests lie with the nature of services provided and how well or poorly they are organized and delivered. On the provider side, one can speak about physicians, nurses, and other practitioners and technicians. On the in - stitutional side, there are hospitals and nursing homes, and community-based providers such as community health centers. These groups do not speak with a single policy voice as their per - spectives differ. Historically, the technical expertise of physi - cians justified their control over the organization essential to understand that it may be possible to rationally explain how decisions were made at any point of the cycle, but not their content.

There may be agreement as to the problem. For example, the problems in the healthcare system are generally described regarding the number of uninsured individuals, the high cost of health care that limits access, or the uneven quality of care. However, the agreement stops there. The attribution of causation and the presentation of solutions reflect the diversity of ideas held by the multiple stakeholders; each is attempting to de - fine the problem and desired outcomes based on what they deem as “best.” This means there is no objective best an - swer. There is typically a range of competing best answers depending on the perspective from which one views the problem. “Best” is thus an important but always-loaded term be - cause the process is a political one. At each twist and turn in the policy processes, best is deter - mined by the stakeholders that hold the great - est sway over the decisions that will be made.

The government’s role typically becomes one of mediation between these interests as it formu - lates, creates, and implements policies and pro - grams that aim to achieve broader social goals.

Interest Groups in the Health Field The healthcare field is composed of many play - ers, both inside and outside government. Be - cause health and health care are fundamental to our well-being, it is a sphere of activity in which everyone has a vested interest. While it is possible to speak about the public’s interest, interest groups typically refer to people and or - ganizations with the most immediate stake in a problem and its resolution (Stone, 2012). These groups are known and identifiable. They repre - sent multiple interests, and each one is trying to influence the direction of government pol - icy. The challenge for someone interested in the policy-making process is to understand how 32 Chapter 2 Policy and Politics Explained The business community, for example, is the prime purchaser of health care. They are in - terested in controlling what they spend on employee health benefits while providing a package of service that meets employees’ needs.

There is a plethora of organizations that rep - resent business interests, including the U.S.

Chamber of Commerce, which advocates on behalf of small businesses. The business sec - tor typically works in conjunction with insur - ance companies that are represented by the Health Insurance Association of America. The federal and state governments are also major purchasers of services. The U.S. Department of Health and Human Services (HHS) admin - isters federal health programs. The National Governors Association represents the inter - ests of state governments. The role of the medical supply industry in health policy decisions is expanding as tech - nology plays a greater role in the provision of health care and comprises a growing percent - age of healthcare spending. The pharmaceutical industry, which is represented by the Pharma - ceutical Research and Manufacturers of Amer - ica (PhRMA), is the fastest growing part of this sector. The American healthcare system is known for its technological know-how and the interests of these companies, represented by Advanced Medical Technology Association, must also be taken into account. Closely aligned with provider groups are knowledge producers who advance the science that underpins medical care and its organiza - tion and financing and establishes and maintains standards for medical practice. This includes universities and biomedical research organiza - tions. There are also think tanks that produce and disseminate healthcare research, such as the Institute of Medicine, the Kaiser Family Foun - dation, and the Commonwealth Fund. Last are organizations like the American Association of Medical Colleges and The Joint Commission that work to maintain the standards of med - ical practice through accreditation, examina - tions, and licensing. and delivery of medical services (Freidson, 1970; Starr, 1982). Their authority extended to state-supported control over the healthcare field.

Physicians determined the regulation of medi - cine through state licensing procedures. Physi - cians as a group are represented by the American Medical Association (AMA). The power of the AMA was legendary, but also circumspect. Phy - sicians actively advocated against programs, such as national health insurance, because they feared it would enable the government to reg - ulate the provision of health services and the physician–patient relationship. The AMA’s in - terest typically remains at the broadest level as they avoid specific policy issues when the ben - efit of their members can be at odds. As a result, the different medical specialties are represented by their organizations. The nursing profession’s interests diverge from those of physicians because they focus more on the process of care as opposed to cure (Glouberman & Mintzberg, 2001). However, like physicians, nurses are represented by multiple organizations, including the American Nurses Association, American Association of Colleges of Nursing, the National League for Nurses, and the Association of Nurse Executives. They often work jointly when addressing issues surround - ing health, health care, and nursing practice, but take independent positions on specific issues such as unionization. The same holds true for institutional providers. On the provider side, the American Hospital Association is the primary advocacy group for the hospital industry, but voluntary, public, and for- profit hospitals each have their own associations, as do academic health centers. Their interests are often focused on how the financing of care can be structured to assure access for the populations they serve. Critical to the system are organizations that pay for health services. Each of these groups has a concern for the well-being of the popu - lation, but each one also has a stake in devel - oping financing and reimbursement methods that are responsive to their particular concerns. The Policy-Making Process 33 Democratic majority in the House and the Sen - ate that could assure passage of the ACA with or without partisan support. A similar scenario unfolded concerning repeal. Trump’s campaign to “make America great again” was directed at people who had not benefited from the eco - nomic recovery following the recession of 2008.

For many middle-income persons, the ACA re - sulted in higher health costs as a result of rising premiums and deductibles, or their decision to pay the penalty under the individual mandate.

With Republicans in control of both Congress and Senate, the executive branch assumed that repeal and replace would not be difficult to achieve. But the consensus on how to proceed was not there (Shabad, 2017).

Identifying the Direction of Policy Change Once a policy issue and its political framing become part of the public agenda, the relevant question becomes which alternative will have the greatest chance of succeeding. Typically, it is argued that the ideas and programs of inter - est groups with the greatest access to policymak - ers have the greatest chance of success, while others struggle to be heard (Schnattschneider, 1960; Bachrach & Baratz, 1962). However, the changing parameters of healthcare reform, as supported by the Obama and Trump administra - tions, demonstrate that the influence of health - care interest groups is not equal or fixed. Power can become realigned over time, as can the im - portance of different stakeholders. The changing balance of power must be seen as part of the ongoing nature of the policy process. There is rarely a situation where poli - cymakers start with a clean slate. Rather, they are responding to the conditions resulting from existing policy and programs (Weible, 2018).

Sometimes policy implementation achieves its goals and furthers social equity, but at times there can be unintended consequences that worsen the outcomes for many people. It is this ten - sion over who benefits and who is left behind Politics of Decision Making In most cases, the social problems addressed by the government have been known and part of the national dialogue for many years. The gov - ernment, however, does not assume an activist stance on all issues at all times. As a result, there are periods of relative stasis when the govern - ment is not called upon to play a highly inter - ventionist role. Rather, it makes incremental changes to improve upon existing policy or ad - vance programs that are limited in scope and whose impacts are understood (Baumgartner, Jones, & Mortensen, 2018). However, the situ - ation can change, and there can be a window of opportunity that brings an issue to the forefront ( Herweg, Zahariadis, & Zohlnhofer, 2018). This can result in large-scale departures from the past. There are different types of events that ele - vate an issue at a particular point in time (Peter - son, 1993). The government is often responsive to the external environment such as a natural disaster like Hurricane Katrina or, more re - cently, Hurricane Harvey. Many public health issues that had been ignored before the hurri - cane, such as emergency preparedness, were sud - denly perceived as needing immediate action (Fee & Brown, 2002). Interest groups also have the tools to advance their agendas. The series of lawsuits brought against tobacco companies in the 1990s, which led them to seek liability pro - tection in exchange for greater regulation, is an example of the use of the legal system (Pertschuk, 2001). Presidents can also advance a policy is - sue. Most recently, Presidents Clinton, Obama, and now Trump have made healthcare reform one of the central issues of their presidencies.

This overarching concern has dominated health policy making. These triggering events and their ability to shape the political agenda and policy options are heavily influenced by politics of the time (Kingdon, 1995). Obama’s campaign in 2008 was framed by the ideas of hope and change.

Given the crash of the financial markets, peo - ple were looking for some assurances about the economic well-being of the country. There was a 34 Chapter 2 Policy and Politics Explained who benefited greatly from the expansion of health services were not looked to for the solution. Their medical expertise regarding the organization and delivery of care did not carry the same weight as the managerial expertise of systems administra - tors, including third-party payers who under - stood healthcare financing. These groups were in a better position to control costs by creating financial incentives to influence physician prac - tice patterns (Weissert & Weissert, 2012). The government took the lead in controlling hospi - tal costs when it changed Medicare reimburse - ment and incentivized the growth of managed care. This resulted in the consolidation of health providers under the control of hospitals and large multispecialty group practices and, ultimately, a rebalancing of power between physicians and in - stitutional providers and payers of care in deter - mining how health care would be organized and delivered (Relman, 1980; Starr, 2017). Like Medicare and Medicaid, the ACA can be understood as both an extension and disruption of existing policies and programs. By the time the ACA was passed, the number of uninsured was approaching one-fifth of the population (KFF, 2016). In addition, healthcare spending contin - ued to rise and accounted for over 17% of GDP.

The goal of the ACA was to expand access and contain costs. The ACA used private insurance markets to make individual health insurance more widely available by providing subsidies or tax credits to persons with incomes between 138% and 400% of poverty. The fundamental change was the Medicaid expansion. Under the ACA, Medicaid was reconceived as a universal insur - ance program for all people with incomes below 138% of poverty (Nardin, Zallman, McCormick, Woolhandler, & Himmelstein, 2013). Although the Supreme Court made the expansion optional, at this time, over 20% of the population is insured by Medicaid (KFF, 2017). The Republican effort to repeal the ACA is aimed at returning the organization, delivery, and financing of health care to the market (Jost, 2017). Rather than looking to government to provide a public benefit, the Republican bills to repeal and replace the ACA use a system of tax that sets up the political conditions for change and the ability of different actors to influence the situation. The passage of Medicare and Medicaid in 1965 marked the first time the federal gov - ernment provided health insurance for anyone other than federal employees and the military.

The legislation garnered widespread support be - cause it was responsive to the dominant health - care interest groups. The hospitals backed Part A because charges would be determined retro - spectively based on actual costs, and they would receive reimbursement for persons who previ - ously had trouble paying for hospital care. Phy - sicians and the AMA, as well as the Republicans, supported Part B because it was voluntary and did not undermine the doctor–patient relation - ship by creating a broader precedent for the gov - ernment provision of care. Insurance companies supported Medicare because they would be re - sponsible for claims administration. For Demo - crats, Medicare was a social insurance program that set a precedent for government-provided universal coverage (Marmor, 1973). These pro - grams were built around the interests of the most influential stakeholders, but they also broke new ground in making health care more widely af - fordable and, therefore, accessible. What was unforeseen at the time Medicare and Medicaid were passed was that the imple - mentation of these programs would shift the balance of power away from physicians and to - wards institutions whose interests centered on the financing of health care (Morone, 1995). Fol - lowing implementation of Medicare and Med - icaid, healthcare costs began to rapidly increase due to expanded access to medical care and the ways payments were calculated. Healthcare ex - penditures almost doubled from 5.6% of the gross domestic product (GDP) in 1965 when the legislation was passed to 10.1% by 1983 when the government implemented a revised hospi - tal payment system from one based on actual costs to one based on fixed costs (Centers for Medicare & Medicaid Services, 2016). The policy issue was recast from one of ac - cess to one of cost containment. Physician groups The Policy-Making Process 35 already been negotiated among all of the inter - ested stakeholders during the process of policy formation. These negotiations continue right up until the moment that the proposed legislation comes under review by Congress and is written into law (Weissert & Weissert, 2012). Govern - ment seeks to advance broader social interests while being responsive to vested power in the healthcare industry that demands concessions in the programs being advanced. Medicare created a managed care pro - gram, Part C, that is controlled by managed care companies to exist alongside traditional Medicare that is controlled by the health pro - viders. Until recently, Part C costs exceeded those of traditional Medicare, but the govern - ment subsidized the difference (Biles, Casillas, & Guterman, 2016). Likewise, Medicare Part D, the Prescription Drug Plan, does not allow the government to use its buying power to negoti - ate pharmaceutical prices. Passage of the ACA also required the support of powerful interest groups, such as the hospital sector, insurance in - dustry, and small businesses. Despite opposition, President Obama moved ahead in a relatively expeditious way. Their support was obtained by making concessions to large stakeholders.

The most significant was the elimination of the government-sponsored health insurance option (Oberlander, 2010). Legislation provides the broadest possible outline of a program. The specificity of the law determines the flexibility that the administration has in its implementation (Lowi, 1979). There are advantages and disadvantages to both choices.

A bill in which the details are clearly specified may encounter difficulty in Congress because groups may oppose the particulars and disre - gard the overarching goals, which was the case in Clinton’s health reform. A consensus can be more easily built around a law with broad goals and few details (Stone, 2012). In that case, deci - sions about implementation are left to the ad - ministering agencies. How an agency chooses to implement the program can have a tremendous influence on its  outcome (Jacobson & Wasserman, 1999; credits to ensure the affordability of health in - surance. Rather than requiring insurers to pro - vide a basic package of federally defined essential benefits, insurers can offer minimal coverage at lower costs. Rather than mandating that individ - uals have basic health coverage, Republicans as - sume that individuals can anticipate the levels of health insurance that would best meet their needs.

However, lower costs shift the financial risks and health outcome risks on to patients. This takes us back over four decades. As Kenneth Arrow (1974) pointed out in the early 1970s, the market does not work when there is an unequal distribution of income and the market goods are costly and essential to individual well-being. Health care now accounts for almost one-fifth of the economy (18% of GDP). Given that sizable portion of the economy, major institutional play - ers actively protect their positions when it comes to health policy. This can be seen in the amount of money being spent to influence legislators (OpenSecrets.org, n.d.). In 2016, the pharma - ceutical and health product industry spent over one-quarter of a billion dollars ($248,733,749) on lobbying. This was the most of any industry in the country. Pharmaceuticals were followed by insurance companies, which spent almost $153 billion. In eighth place was the hospital and nurs - ing home industry, whose combined spending was just under $100 million. The healthcare in - dustry also donated almost $200 million to par - ties and candidates in the 2015 to 2016 election cycle—51% to Democrats and 48% to Repub - licans. These industry groups would not spend such large sums if they were not looking to in - fluence impending health policy decisions in directions that furthered their economic inter - ests but were aligned with the underlying goals of access, cost, and quality.

Policy Adoption and Implementation Policy is enacted through the legislative process.

Elected officials decide the broad outlines of pol - icy when they enact laws, but they do not act in a vacuum. They act upon proposals that have 36 Chapter 2 Policy and Politics Explained rise as much as 25%, most Republicans sup - ported repeal of the ACA. They considered the market for health care so distorted by govern - ment programs that repeal was the only way to wipe the slate clean and begin again (Ponnuru & Levin, 2013). Whether one agrees or not with the Republican “wipe the slate clean” policy ap - proach, it is up against a powerful real-world coalition of vested interests that are at best in - clined towards incremental change in an oth - erwise working system.

▸ What Is at Stake for Nurses and Other Health Professionals? Healthcare professionals and their patients ex - perience the impact of the implementation pro - cess on a daily basis. How patients are recruited to programs such as state insurance exchanges is determined by the regulations of these pro - grams. Which companies offer health plans, and the scope of these plans under the exchanges, are the result of program guidelines and the payment rates for physicians participating in accountable care organizations (ACOs). These are examples of how policy developed by federal or state legislatures and implemented by federal and state administering agencies are realized in the ways health care is provided and adminis - tered. Although their work is seemingly distant, their impact is immediate regarding access to quality, cost effective care. The work of nurses and other health pro - fessionals tends to be highly individualized. By interacting with patients, these individuals see the many problems that result from policy deci - sions made at a distance. They understand how physicians’ orientation toward care can overrule nurses’ orientation toward care (Glouberman & Mintzberg, 2001). They observe how the loss of healthcare insurance can result in patients de - ferring care, much to their detriment. They un - derstand that the pursuit of quality patient care Morone, 1995; Pressman & Wildavsky, 1973).

The leadership of the agency must be in accord with the program’s goals so it does not languish, and the personnel must have program expertise to implement it effectively (Peterson, 1993). Or - ganized interests that were instrumental through - out the legislative process play a comparable role during its implementation. They work with the administrative agencies to ensure that the appli - cation meets their interests by monitoring the process (Pressman & Wildavsky, 1973). The Obama administration nominated Don - ald Berwick to serve as Director of the Centers for Medicare and Medicaid Services. He had played a significant role in the development of the ACA. The Trump administration appointed Tom Price as Secretary of HHS. A fierce oppo - nent of the ACA, his administration has begun to weaken enforcement of the individual mandate, impose work requirements on Medicaid recipi - ents, and limit outreach to the uninsured during open enrollment (Park & Sanger-Katz, 2017). Programs do not always achieve their stated goals. There are unintended consequences that result from any legislative act. The cyclical na - ture of the policy process becomes apparent.

The proposed solutions in one period set up the problems that need be addressed in the next.

One result of bringing all interested parties into the ACA is that the most recent (2017) efforts to repeal were not successful. Although there is widespread dissatisfaction with the ACA, the Republicans misread its meaning. The public was disappointed that the ACA had not con - trolled the cost of health care as promised. How - ever, they did not support repeal. They wanted Congress to address the unintended cost con - sequences of the ACA so the legislation would realize the level of protection it had promised (Jacobs & Mettler, 2017). Also, there was a no - ticeable absence of support from all interest groups (Leonhardt, 2017). Despite the noticeable lack of support, the Congressional Budget Office’s estimates that as many as 14 million persons might lose health in - surance in 2018, and estimates from the insur - ance industry that individual premiums could What Is at Stake for Nurses and Other Health Professionals? 37 expertise (Wynia, Kohorn, & Mitchell, 2012).

Nurses and other health professionals who took instruction from doctors for matters related to direct patient care are being recognized for their expertise. They have become strong advocates for interprofessional education and have even begun to seek professional status and the right to independent practice. Professional associations, such as those for physical therapists and nurse practitioners, are lobbying on a state-by-state basis to change licensing laws so these clinicians can practice independently and receive direct reimbursement for their services. Such laws recognize the shifting base of power within the health field through the creation of alternative centers of authority. By understanding the process and how it has shaped the organization and delivery of health care, it is possible to understand the terms of engagement. Since the 1990s, the market was assumed to bring greater efficiency to the or - ganization and delivery of health care. It is the failure of this approach that reinvigorates inter - est in its politics. We know that the problems of health costs, access, and quality have not been fully resolved. The critical challenge remains one of determining how health care should be organized and delivered to ensure the best pos - sible health outcomes for the population. De - termining what will be the trade-offs between access, costs, and quality will impact the situa - tion that nurses and other professionals confront every day. Nurses and other healthcare providers need to become one of the dominant voices in the policy-making and policy- implementation process for how the healthcare system will best meet the needs of the people it serves.

Discussion Questions 1. What are the limits of the market in the provision of health services? 2. Why does the federalist system of gov - ernment result in the fragmentation of healthcare delivery? 3. What makes policy alternatives political in nature? is dependent on their ability to engage and use nursing resources effectively, which will likely become more challenging as the nursing short - age persists and resources become increasingly limited (Rother & Lavizzo-Mourey, 2009).

© Samuel Perry/Shutterstock In many cases, these professionals become the patients’ advocates, but historically they have not played a major role in the initial develop - ment of the policies that have such a tremendous impact on their work and the lives of their patients.

Some have attributed this to heavy workloads.

Others have discussed the educational process that socializes nurses to distance themselves from politics. Still others speak about the difficulty nurses have had in asserting their professional authority when they find themselves up against dominant interests, such as physician groups, hospitals, and payers. Regardless of the cause, nurses and other health professionals are assert - ing a greater voice in the policy-making process (Clarke, Swider, & Bigley, 2013; Needleman & Hassmiller, 2009). Nurses and other health professionals are finding themselves with greater authority and are leading several policy-related discussions.

The healthcare labor force, which has been de - scribed as a pyramid with physicians at the apex directing all related medical practice, is chang - ing. As the provision of care becomes increas - ingly complex, team-based care is taking hold.

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Los Angeles, CA: Sage Press. Morone, J. (1995). Elusive community: Democracy, deliberation, and the reconstruction of health policy. In M. Landy & M. Levin (Eds.). The new politics of public policy (pp. 180–204). Baltimore, MD: Johns Hopkins University Press. Nardin, R., Zallman, L., McCormick, D., Woolhandler, S., & Himmelstein, D. (2013). The uninsured after implemen-tation of the Affordable Care Act: A demographic and geographic analysis. Health Affairs Blog. Retrieved from http://healthaffairs.org/blog/2013/06/06/the-uninsured 40 Chapter 2 Policy and Politics Explained Weible, C. M. (2017). Introduction: The scope and focus of policy process research and theory. In C. M. Weible & P. A. Sabatier (Eds.), Theories of the policy process (4th ed., pp. 1–13). New York, NY: Westview Press. Weissert, W. G., & Weissert, C. S. (2012). Governing health: The politics of health policy (4th ed.). Baltimore, MD: Johns Hopkins University Press. Wynia, M. K., Kohorn, I. V., & Mitchell, P. H. 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Norton & Company. 41 References © Anthony Krikorian/Shutterstock A Policy Toolkit for Healthcare Providers and Activists Roby Robertson and Donna Middaugh OBJECTIVES ■ Define the role of healthcare professionals in policy advocacy and politics. ■ Describe processes for becoming a policy advocate within one’s own organization, profession, and community. ■ Recognize the difference between expertise and internal and external advocacy in relation to stakeholders. ■ Describe benefits of using an interdisciplinary collaborative approach in policy advocacy. ■ Apply the concepts of health policy to case study vignettes. ■ Develop one’s own toolkit for becoming a health policy advocate. OVERVIEW What is the role of healthcare professionals in the political process? Given the range of issues, where does the political process begin and end? Healthcare policy is centered around the notion that all healthcare providers require a fundamental understanding of the healthcare system that is not limited to the knowledge required to practice their discipline. No longer can healthcare professionals be prepared solely for clinical practice. They must ready themselves to deal with the economic, political, and policy dimensions of health care because the services they provide are the outcome of these dynamics. 43 CHAPTER 3 ▸ Introduction Professional nurses and other allied health prac - titioners must have a seat at the policy table, but they must also understand the perspectives of their colleagues; therefore, we have used contrib - utors from outside of nursing, including allied health professionals, activists, politicians, econ - omists, and policy analysts who understand the forces of health care in the United States. The rationale behind an interdisciplinary approach is that no one person has the right solution to the challenges confronting health care in the U.S. These challenges include high costs, lim - ited access, medical errors, variable quality, ad - ministrative inefficiencies, and a lack of care coordination. It is not surprising that the healthcare sys - tem is under serious stress and that a host of ac - tors, both within and beyond the system, have myriad solutions to the problem. This chapter offers current and future healthcare practitioners who are committed to reducing health dispar - ities and achieving healthcare equality insight into how clinical practice is derived from reg - ulations and laws that are based on public pol - icy and politics. It is important to note that politics is both necessary and critical to making changes, whether we are discussing system-level reforms (e.g., na - tional health insurance reform) or a local hospi - tal improving health data access (e.g., electronic medical records). This chapter provides healthcare practi - tioners a toolkit, or a working model, of how to “do” policy advocacy within and beyond our organizational lines. The toolkit is based on the ability to answers these questions: What is the health professional’s role in policy advocacy and politics? How is that role changing in the midst of organizational evolution where strict bureau - cratic control is being replaced with more flex - ible models of collaborative decision making across public, private, and nonprofit arenas? In addition, this chapter examines two broad components of policy change: the influence and power of stakeholders or constituencies, and the power of expertise. Although these arenas over - lap, here we examine them separately to portray their specific roles more accurately. What, then, is the healthcare practitioner’s role in the political process? Where does that process take place? In this chapter we examine the dynamics of the process. Many traditional views define the political process as external only, primarily defined at the policy-making levels of government or boards and commis - sions; therefore, the argument follows that pro - fessionals below senior-level decision makers are primarily reactive—that is, they respond to proposals from up the line and must calculate how to implement changes that others have im - posed on them. In public administration this has tradition - ally been defined as a politics/administration di - chotomy; that is, political decisions are made by higher ups, and the administrator finds a way to carry out those decisions. That dichotomy, however, is not reflective of reality because in actual decision making and in the practicali - ties of day-to-day management, policy shaping and implementation within a given organiza - tion are the result of interactions at all levels of the organization. The administrators are trying to influence policy outcomes, like those in the policy arena. It is time that healthcare practi - tioners do the same. There is another reason why practitioners must develop a political/policy toolkit. Politics and policy making are not a function only of the external environment of the organization.

In fact, the most sophisticated and nuanced el - ements of such a policy/political role can also be found in the internal environment of the or - ganization. Again, practitioners can play a role in influencing these outcomes. Imagine the following scenario: Your se - nior executive pulls you aside one day and says, “Do you know that proposal you’ve wanted to push forward about how we reallocate the staff here in the organization? Well, why don’t you put together the budget, a time line, and what we need to do to move this forward in the next budget cycle?” You have been anxious to do so 44 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists for some time, and you stay in the office every evening detailing the proposal (with fancy pie charts, a time line, personnel requirements, etc.), and you turn it in to your executive. A week goes by, and then two, then three. You are getting anxious; to start some of the time line issues you would need to get rolling soon, but you’ve heard nothing. You mention it to the executive and she nods, looks solemn, and asks you back into the office. She sits on the edge of the desk (not behind the desk, not a good sign) and pulls out your proposal. You can see it has lots of red marks throughout. The executive shakes her head and says, “Well it re - ally is a great idea; it really is the way to go in the future, but I ran it up the line, and well, you know, politics got in the way. It’s just not going to fly!” She hands back your proposal. You re - turn to your office and open the file cabinet of other projects that didn’t get off the ground, and you think, politics! Why didn’t it fly? What could have hap - pened? Senior managers did not like the pro - posal? It competed with other proposed changes that could fly. What kept yours from flying? Per - haps it was because you had not accounted for the politics of your own organization. Politics exist at the organizational level, not just at the policy-making level, and you did not take those considerations into account. Thus, our approach in this chapter suggests that the politics of the environment are both external and internal. In all areas of leadership and management, within the healthcare policy arena and beyond, the shift to managing in a more collaborative arena (vs. a more bureaucratic one) also re - quires particular attention to utilizing political tools to operate effectively. Instead of perceiv - ing “politics” as a control function (zero sum winning and losing), the effective leader in the policy advocacy world must see the political environment as an ongoing process shaped by short-term collaborative relationships, which may exist for temporary networks and dissolve as the process continues to evolve. In nursing leadership and administration, much of the theoretical and conceptual research refers to such models as shared governance mod - els. As early as 1988, research focused on how to better integrate such efforts into effective practice (Allen, Calkin, & Peterson, 1988). Yet, even as late as 2004, a careful review of the lit - erature of shared governance had yielded con - siderable anecdotal support for its importance, but not much empirical evidence of its effec - tiveness (Anthony, 2004). The reality is that more and more manage - ment functions in health care require greater assimilation of collaborative models to the ef - fective practice of administration. We suggest that the key to gaining more effective use of the policy environment, both inside and outside the organization, is to understand more effectively the power that one has to effect change. Unlike many analyses of power that are often based on the individual, our approach is to exam - ine the organizational power that exists for the practitioner/advocate. We examine that power through two broad lenses: the power of stake - holder relationships and the power of expertise. FIGURE 3-1 is a simple heuristic about power. This pyramid has been widely used in political science and policy fields for years. Power can be seen in the levels of the pyramid, with the nar - rowest (and thus the weakest) type of power at the top of the pyramid. It becomes broader with more effective types of power. Force we all un - derstand. The power to make others do things is obvious, from the actual use of force (includ - ing weapons) through the more common use of force in an organization, which is the power of the organization to enforce rules, standards, and practices. Influence is more nuanced, but its role is also obvious. Does the organization have the capacity to convince others that they should support or acquiesce to the organiza - tion’s decision? There are many reasons an or - ganization may be able to influence a decision.

Possibly the organization has shown the capac - ity to be successful; maybe the organization has demonstrated knowledge or connections to ac - complish the required tasks. Nevertheless, the organization must convince others that its de - cisions are good. Finally, the broadest and most Introduction 45 Here we summarize two broad elements that un - dergird the organization’s power: stakeholders and expertise. We are going to distinguish be - tween internal and external power (power within the organization and beyond) (see FIGURE 3-2). ▸ Stakeholder Power For many in the healthcare arena, stakeholder power is the most obvious political tool. A simple “who do you know, who is on our side” model of developing policy change is obvious.

Too often, however, our approach is to simply add up the influential players on our side and the other side. The stakeholder list becomes a roster of names rather than the nature of power relationships. If it is just a matter of numbers, any policy that is supported by a greater number of individuals or organizations should prevail.

Under those conditions, we would suggest that a national health system that is effective for the poor would be the easiest to pass, but we know that organizations representing low- income groups have less influence than those repre - senting high-income groups. It therefore can - not be just numbers! FIGURE 3-1 The power pyramid Force Inf luence A uthor ity FIGURE 3-2 Focus and locus of organizational power IS Internal Ext ernal LOCUS Exper tise Stak eholder s FOCUS IE ES EE critical part of the pyramid is authority. At the core of a lot of political theory is authority— the acceptance of the organization to decide and the acceptance by others of its decisions without serious question. Expertise is one form of author - ity. It is clear that in some situations the exper - tise of the organization, its professionals, and/ or the policy implementation of that expertise is simply accepted—but that is not always true! One example of how all three elements of the power triangle work is when you are driv - ing your car late at night and you stop at a red light with nobody around. There you sit because a light bulb with a red cover is on. Now, that is power! Do you recognize why you stopped? Did you have to be convinced? (Maybe you think for a second that lights regulate traffic, but it is the middle of the night and there are no cars around.) You do not run the light right away because you first look around to see if there is a police car around. Now all three elements are in play. You stopped at the light in the first place because it turned red, and you stop at red lights. Thus, how do we understand our power in organizations? There are multiple elements— from the regulatory environment, the level of federalism, the growth of the state, and so forth.

46 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists the importance of having stakeholders who are organized and have well-defined structures. For example, veterans is a vague definition for a set of stakeholders, but the American Legion and Veterans of Foreign Wars are two critical orga - nized groups that represent veterans. What if there is no organized set of stake - holders? The first question might be, why is that true? Perhaps the stakeholders in the external environment that your organization deals with are too amorphous to be defined. In James Wil - son’s (1989) terminology, you may represent a majoritarian organization that has no discern - ible set of constituents or stakeholders other than the public. If that is the case, stakeholder power will be more limited for your organization. At the other end of Wilson’s stakeholder organiza - tional model are client agencies whose power is defined heavily through a strong relationship with a single client group. In those cases, the or - ganizations must seek to avoid being captured by that single clientele group (Wilson, 1989). However, we have found that many organi - zations have developed stakeholder groups over time (often for nonpolitical reasons), which gen - erates some level of influence. One of our favor - ite examples comes from outside the healthcare arena—police departments. If one thinks about nat - ural constituents or stakeholders, a police depart - ment’s most obvious stakeholders are those who commit crimes—we are not sure how to build a stakeholder group there! Over time, police depart - ments have developed a host of support organiza - tions, including neighborhood watch groups. The reason they are created is not to influence politi - cal decisions about police departments, but strong neighborhood watch groups (organized across a city) can become a critical secondary stakeholder group for a police department. Who organized those neighborhood watches? Generally, police departments took the lead and the neighborhood watch groups typically support what is being pro - posed by the police department. The example of a children’s hospital is appro - priate here. One might argue that on a day-to-day basis, the constituents of such a hospital are the patients. They are children, but maybe we would Stakeholder analysis is tied to the network of stakeholders and which sets of stakehold - ers are closer to your organization and which are more distant. This close/distant issue is of - ten defined in terms of natural and face-to-face relationships—ideally, which groups deal with your agency or policy arena on a routine, con - stant basis and which groups deal with your organization on a more limited basis. Thus, the classic stakeholder map often has concen - tric circles of groups and organizations that are closer and further away from the organization based on the level of interdependence and orga - nizational closeness (Fottler, Blair, Whitehead, Laus, & Savage, 1989). If you represent a veter - ans’ hospital, for example, members of veter - ans’ organizations, such as the American Legion or Veterans of Foreign Wars, are more central to your organization, but if you are working at a children’s hospital, that organizational tie is irrelevant. Thus, understanding how central other stakeholders are to the organization may be the first part of a stakeholder analysis ( FIGURE 3-3). To understand stakeholder power for an or - ganization, one must define it in terms of orga - nized stakeholders. When working with various healthcare organizations, we often hear stake - holders described in individual terms (e.g., pa - tients or customers), but the key is to recognize FIGURE 3-3 Simplified stakeholder map Secondary stakeholders Less relevant stakeholders Core stakeholders Organization programor Stakeholder Power 47 and has detailed how to expand the relationships with both nurses and other stakeholder groups in the field. Additionally, the National League for Nursing (2013) offers a Public Policy Advo - cacy Toolkit to guide nurses, nursing students, and nursing faculty through the levels of gov - ernmental actions. See BOX 3-1 for a list of pro - fessional nursing membership associations that address policy advocacy. To understand the ad - vocacy role, one must see the importance of the professions’ own expertise, to which we now turn.

▸ Expertise What is expert power in an organization? Some define it in terms of knowledge acquisition and professionalism. Thus, an expert organization would have a large proportion of highly edu - cated professionals, defined by advanced edu - cation, licensure, professional norms and ethical standards, and a lifetime of continuing education.

The healthcare arena has a clear advantage here. include the parents. What about parent groups?

Generally, they have limited interest in being stakeholders of the hospital; in fact, they want their children to get well and leave the hospital.

What about children suffering from a chronic illness or a long-term disease such as cancer?

Most hospitals have developed parent and chil - dren’s groups that get together periodically to support each other (and to provide additional information to the hospital and to other pa - tients and their families about coping with the illness). If the hospital’s outreach department has helped organize the group so that it estab - lishes officers and meeting dates, the group is organized! Is it the same as a veterans’ organi - zation? Clearly not, but it would be wise to in - clude such a group in any efforts to advocate for policy changes (inside and beyond the hospital). If most organizations understand the im - portance of stakeholder relationships in under - standing and utilizing political power, how does the continuing growth of collaborative/shared governance impact that role? At the core of most applications of collaborative models is the need to identify and strengthen all direct and indi - rect partners in the collaborative process. From a personal toolkit perspective, many have em - phasized the importance of creating stakeholder analyses and maps of one’s organizational net - work. If the relationship will be more dynamic and evolving depending on the particular ele - ment of the stakeholders in a collaborative rela - tionship, how much more essential is a continuing in-depth stakeholder analysis? Indeed, in much of the collaborative literature, moving organiza - tions, advocates, and support structures within the policy partnerships (and back out when no longer part of the process) becomes a day-to-day requirement and essential to the ongoing success of the collaborative policy advocacy network. Finally, we suggest that most professional groups have delineated additional ways to de - velop clear stakeholder relationships because they have a stake in what happens within the day-to-day operations of an organization. In nursing, for example, the American Nurses Asso - ciation (2013) has created an advocacy network 48 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists BOX 3-1 Professional Nursing Membership Associations That Address Policy Advocacy American Academy of Nursing (AAN) – www.aannet.org American Association of Nurse Practitioners (AANP) – www.aanp.org American Association of Colleges of Nursing (AACN) – www.aacn.nche.edu American Nurses Association (ANA) – www.nursingworld.org American Organization of Nurse Executives (AONE) – www.aone.org International Council of Nurses (ICN) – www.icn.ch/ National Council of State Boards of Nursing (NCSBN) – www.ncsbn.org National League for Nursing (NLN) – www.nln.org Sigma Theta Tau International Honor Society of Nursing – www.nursingsociety.org advanced practice registered nurse (APRN), cer - tified registered nurse anesthetist (CRNA), clin - ical nurse specialist (CNS), or other advanced practice nurse. But it does see the difference be - tween a general practitioner in medicine and a specialist in oncology. What is the difference?

We suggest that the public is convinced (gener - ally through well-defined efforts by the medical establishment) that there are differences in be - havior in the various medical specializations and that some of them have more expertise power be - cause the public perceives them as more expert.

Why is that not as true in nursing? We think part of the explanation is that the nursing profession has been reluctant to publically emphasize the differences among the various areas of nursing professionalism. We suggest that this limits the political capacity of the various specializations to garner separate political support. Buresh and Gordon (2000) proclaim that nurses are not recognized as a profession because they do not educate patients and their families, friends, and communities about nursing work.

If the voice and viability of nursing were com - mensurate with the size and importance of nurs - ing in health care, nurses would receive the three Rs: respect, recognition, and reward. These au - thors expound that if the work of nurses is un - known or misunderstood, then nurses cannot be appreciated or supported and cannot exert appropriate influence in health care. They go on to say that the general public needs to know what nurses do today and why their work is es - sential. The Institute of Medicine’s The Future of Nursing: Leading Change, Advancing Health re- port (2011) proclaims, “The nursing profession must produce leaders throughout the health care system, from the bedside to the boardroom, who can serve as full partners with other health pro - fessionals and be accountable for their own con - tributions to delivering high-quality care while working collaboratively with leaders from other health professions” (p. 221). Those in a position to influence legisla - tion, policy making and funding must know that health care environments The various professions within any existing health - care arena are often complex, and they have special - ized education, training, and licensure at virtually every level of professional delivery of services.

Such professionalized organizations often begin with a noticeable advantage over other organi - zations in which there is little or no profession - alized work force because of their expertise that lends added weight to their advocacy positions. Thus, any definition of organizational exper - tise must begin with the nature of the expertise of the organization and whether it is well devel - oped and professionalized and of the highest ed - ucational standards; however, one must be careful about defining this power simply as a set of ac - quired educational or professional standards. In the end, it is a bit like a traffic light—all the diplo - mas, certificates, and licensures do not necessar - ily mean the expertise is perceived as powerful.

Similar to the number of stakeholders not being as important as the proximity of stakeholders to the decision makers, not all experts carry equal weight when it comes to organizational decisions. What is the key to this expertise? It is the per - ception of others that the expertise is legitimate.

Many healthcare professionals blunder here be - cause they believe a variety of graduate and pro - fessional degrees automatically leads to support of their expertise. To put it in simple terms, many occupations (especially in the healthcare arena) are licensed, certified, and with advanced educa - tion, but they do not have equal expertise power.

Why? Maybe because the public or the broader political and policy environment does not dif - ferentiate the various specializations, or the ex - pertise of the profession is recognized strongly only by the profession itself. The public tends to understand expertise hierarchically. The ex - pertise of physicians carries more weight than other professionals within the healthcare system. The best example today is the widespread public agreement about the need for more nurses.

How does that translate generally? The public does not differentiate well between licensed practical nurse (LPN), registered nurse (RN), diploma, As - sociate Degree (AD), Bachelors of Science in nurs - ing (BSN), Master of Science in nursing (MSN), Expertise 49 environment. When policy is being made inter - nally, such as in a hospital, about how practices are implemented, changed, evolved, or reorga - nized, is the profession you represent at the ta - ble in the discussion? If not, why? We all understand how professions develop expertise over time. They have specialized de - grees, certifications, accreditations, licensures, state associations, and so forth. For the nursing profession there is no higher recognition than a Magnet designation for a healthcare organi - zation. The American Nurses Credentialing Center’s Magnet Recognition Program recog - nizes healthcare organizations for quality pa - tient care, nursing excellence, and innovations in professional nursing practice. The organiza - tion says, “Consumers rely on Magnet designa - tion as the ultimate credential for high quality nursing” (American Nurses Credentialing Cen - ter, 2013, p. 1). It is agreed that it is important for excellent nursing care to be recognized and rewarded, but why don’t all healthcare organizations have Mag - net status? Many hospitals have tried and failed; others elect not to go for Magnet status. What does that tell us about this professional issue?

It is still desirable but not everyone is doing it; therefore, it is controversial. Many healthcare institutions cannot afford the Magnet journey.

For others, they cannot meet the level of nurs - ing education and expertise that is required due to size, location, and so forth. Thus, as we develop the toolkit for expert power, we must ask a critical question: Who be - lieves this expertise of a profession is valued and should be represented in the decision-making process both within and beyond the organization? Let us not lose sight of the increasing reality of expertise within collaborative environments.

One of the key components to most analysis of collaborative networks is the need for evolv - ing expertise in accomplishing the tasks within a policy advocacy network. The literature in public administration is rich with two compo - nents of expertise in such a network: bringing specific expertise to a short-term involvement in a collaborative network, and expanding all rich in nurses promote high levels of health whereas understaffed settings put patients at risk. They need to be aware of the incipient tragedies awaiting patients when nurses are not available to prevent falls, complications, errors in treatment and care or to rescue patients in need. (Buresh & Gordon, 2000, p. 18) An example of how nurses fail to commu - nicate their expertise can be found in the simple example of dress. Professionals are often recog - nized by their attire or uniform. The behavior and dress of nurses today tend to downplay pro - fessionalism by blurring the identity of nurses and making the place of nursing in health care more ambiguous. In healthcare settings, it is of - ten not easy for patients or families to pick out who is a nurse and who is not. Buresh & Gor - don (2000) proclaim that without a protocol to provide clarity, it is up to individual nurses to convey who they are through their appearance, behavior, and language. It has become a com - mon practice for nurses in hospital settings to not tell or show their last name on name tags.

Physicians would certainly not do this. When members of the largest healthcare profession (nurses) opt out of the standard professional greeting, they risk communicating that they do not regard themselves as professionals (Buresh & Gordon, 2000). Can you imagine hospitals saying today, as they did 20 to 30 years ago, that they cannot af - ford to staff with registered or BSN-prepared nurses? What has pushed that bar? The Institute of Medicine’s report on the future of nursing recommends that we “increase the propor - tion of nurses with a baccalaureate degree to 80 percent and double the number of nurses with a doctorate by 2020” (Institute of Medi - cine, 2013, p.1). Thus, exerting expert power in an organi - zational setting must also include addressing some important issues, not the least of which is the belief that the expertise of the particular set of professionals has a valid place in the policy 50 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists build a stronger perception of the importance of our expertise with those who work with our programs and agencies? 4. Looking at Figure 3-1, how do organizations overutilize the force component in organizational power?

What kinds of evidence would you expect to see in an organization that is not using influence or authority well? 5. Given the need for greater collabora - tion in the health policy arena, how does improving your stakeholder relationships with other organizations and interests become even more important? References Allen, D., Calkin, J., & Peterson, M. (1988). Making shared governance work: A conceptual model. Journal of Nursing Administration, 18 (1), 37–43. American Nurses Association. (2013). Advocacy—becoming more effective. Retrieved from http://www.nursingworld. org/MainMenuCategories/Policy-Advocacy/Advocacy ResourcesTools American Nurses Credentialing Center. (2013). ANCC Magnet Recognition Program. Retrieved from http://www.nursecredentialing.org/Magnet.aspx Anthony, M., (2004). Shared governance models: The theory, practice, and evidence. Online Journal of Issues in Nursing 9 (1), manuscript 4. Buresh, B., & Gordon, S. (2000). From silence to voice: What nurses know and must communicate to the public. Ottawa, Ontario: Canadian Nurses Association. Fottler, M. D., Blair, J. D., Whitehead, C. J., Laus, M. D., & Savage, G. T. (1989). Assessing key stakeholders: Who matters to hospitals and why? Hospitals and Health Services Administration, 34 (4), 525–546. Institute of Medicine. (2011). The future of nursing: leading change, advancing health. National Academies Press, Washington, DC. Institute of Medicine. (2013). The future of nursing: leading change, advancing health. Retrieved from http://www .thefutureofnursing.org/recommendations National League for Nursing. (2013). Faculty programs and resources: Public policy advocacy toolkit. Retrieved from http://www.nln.org/facultyprograms/publicpolicytoolkit /publicpolicytoolkit.htm Wilson, J. Q. (1989). Bureaucracy: What government agencies do and why they do it. New York, NY: Basic Books. participants’ capacity to expand their own ex - pertise in a shared fashion. Put another way, an effective policy advocacy network needs to share knowledge more effectively, not just add experts to the policy environment.

▸ Conclusion Politics and policy require an understanding of how to build support and adapt to change. If we are to be effective advocates, we must be respon - sive to broader societal needs. Building support is not done simply by presenting the facts. This toolkit is designed to help readers know what it takes in a political environment to build a case and adapt when necessary. A huge mistake in advocacy is to simply believe that the facts are on our side, and if we just continue to list the facts, everyone will believe! In reality, values and political issues are at the core of success - ful change. Our tasks as political advocates for change are as follows:

■ Believe we can convince others to adapt. ■ Adapt ourselves to handle broader political value issues. ■ Learn to mobilize our expert power as one of the largest groups of stakeholders in the healthcare field. Discussion Questions 1. As you read through this chapter, describe the political environment of your own organization, both at the largest level and at a division or office level. 2. Internal and external stakeholders are important to any organization or policy. Describe your view about reliance more on internal stakeholders than on external stakeholders, and vice versa. Why do you think there are differences? 3. Expertise power is often difficult to define in detail, but how do we 51 References stakeholders and type of expertise involved.

The questions following each case study are helpful for group discussion and individual analysis. This chapter concludes with one ad - ditional case study that has not had any po - litical result to date, and readers are asked to analyze that case in terms of how one might build the necessary political stakeholder and expert power.

External Expert Power The first two cases are doubtless well known to readers, but what may not be well known is the history of policy development in these areas. As you examine these two case studies, remember that their purpose is to show the role of exper - tise in affecting policy. ▸ Toolkit Case Studies The case studies included at the end of this toolkit chapter are designed to aid the reader in understanding the politics of organizational power. They are divided based on four catego - ries: external stakeholder, internal stakeholder, external expertise, and internal expertise. Each of these real-life case studies illustrates how health professionals have applied the tools as highlighted within this chapter. The case study authors have included references when appli - cable. To guide your comprehension and appli - cation of the toolkit, the authors have included several thought-provoking questions at the end of each case study. Readers are encouraged to critically analyze the political methods and power used in each case study, exploring the CASE STUDY External Stakeholder Power:

Margaret Sanger as Nurse and Public Health Advocate Ellen Chesler “No gods, no masters,” the rallying cry of the Industrial Workers of the World, was her personal and political manifesto. Emma Goldman, Bill Haywood, Mabel Dodge, and John Reed were among her earliest mentors and comrades. Allied with labor organizers and bohemians, Margaret Sanger first emerged on the American scene in those halcyon days at the turn of the 20th century when the country seemed wide open with possibility, before world war, revolution, and repression provided a more sober reality. She organized pickets, protests, and pageants in the hope of achieving wholesale economic and social justice. What began as a callow faith in revolution quickly gave way to a more concrete agenda for reform. Working as a visiting nurse on New York City’s Lower East Side, she watched a young patient die from the complications of a then-common illegal abortion, and vowed to abandon palliative work and devote herself to a single-minded pursuit of reproductive autonomy for women. Sanger proudly claimed personal freedom for women. She also insisted that the price women pay for equality should not be at the sacrifice of personal fulfillment. Following in the footsteps of a generation of suffragists and social welfare activists who had forgone marriage to gain professional stature and public influence, she became the standard bearer of a less ascetic breed, intent on balancing work and family obligations. The hardest challenge in writing this history for modern audiences, for whom these claims have become routine, is to explain how absolutely destabilizing they seemed in Sanger’s time.

Even with so much lingering animus toward women’s rights today, it is hard to remember that reproduction was once considered a woman’s principal purpose and motherhood was her primary role—women were assumed to have no need for identities or rights independent of those they enjoyed by virtue of their relationships to men. This principle was central to the long- enduring opposition women have faced in seeking rights to work, to inheritance and property, to suffrage, and especially to control of their own bodies. 52 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists contraceptive materials and use the federal mail for transport. The ruling effectively realized years of failed efforts to achieve legislative reform in the U.S. Congress, although it did formally override prohibitions that remained in several states until the historic ruling in Griswold v. Connecticut with its claim of a constitutional doctrine of privacy, later extended so controversially to abortion in Roe v. Wade .

With hard work and determination, she was able to mobilize men of influence in business, labor, academia, and the emerging professions.

No less critical to her success was her decision to invest in the collective potential of women, many of whom had been oriented to activism by the suffrage movement and were eager for a new cause after finally winning the vote in 1920. She also lobbied the churches, convincing the clerical establishments of the progressive Protestant and Jewish denominations of the virtue of liberating sexuality and reproduction from the shroud of myth and mystery to which traditional faiths had long consigned them. She even won a concession from the hierarchy of the American Catholic Church, which overruled the Vatican and endorsed natural family planning, or the so-called rhythm method, as a way of countering the secular birth control movement and reasserting religious authority over values and behavior. With an uncanny feel for the power of well-communicated ideas in a democracy, Sanger moved beyond women’s rights to put forth powerful public health and social welfare claims for birth control. She proved herself a savvy public relations strategist and an adept grassroots organizer. Through the 1920s and 1930s she wrote best-selling books, published a widely read journal, and crisscrossed the country and circled the globe to give lectures and hold conferences that attracted great interest and drove even more publicity. She built a thriving voluntary movement to conduct national- and state-level legislative lobbying and advocacy and to work in communities on the ground, sustaining affiliate organizations that organized and operated pioneering women’s health clinics. Offering a range of medical and mental health services in reasonably sympathetic environments, many of these facilities became laboratories for her idealism. Yet the birth control movement stalled during the long years of the Great Depression (1929-1939) Sanger needed broader arguments. By practicing birth control, women would not just serve themselves, she countered. They would also lower birthrates, alter the balance of supply and demand for labor, alleviate poverty, and thereby achieve the aspirations of workers without the social upheaval of class warfare. It would not be the dictates of Karl Marx, but the refusal of women to bear children indiscriminately, that would alter the course of history, a proposition ever resonant today as state socialism becomes an artifact of history, while family planning, although still contested, endures with palpable consequences worldwide. In 1917, Sanger went to jail for distributing contraceptive pessaries to immigrant women from a makeshift clinic in a tenement storefront in the Brownsville section of Brooklyn. Sanger’s contribution was to demand services for the poor that were available to the middle class. Her heresy, if you will, was in bringing the issue of sexual and reproductive freedom out into the open and claiming it as a woman’s right. She staged her arrest deliberately to challenge New York’s already anachronistic obscenity laws—the legacy of the notorious Anthony Comstock, whose evangelical fervor had captured Victorian politics in a manner eerily reminiscent of our time—and it led to the adoption, by the federal government and the states, of broad criminal sanctions on sexual speech and commerce, including all materials related to contraception and abortion. Direct action tactics served Sanger well, but legal appeal of her conviction also established a medical exception to New York’s Comstock Law.

Doctors—although not nurses, as she originally intended—were granted the right to prescribe contraception for health purposes; under that constraint she built the modern family planning movement with independent, freestanding facilities as the model for distribution of services, a development that occurred largely in spite of leaders of the medical profession who remained shy of the subject for many years, and did not formally endorse birth control until 1937, well after its scientific and social efficacy was demonstrated. By then, Sanger and Hannah Stone, the medical director of her New York clinic, had also achieved another legal breakthrough. They prevailed in a 1936 federal appellate court decision in New York state that licensed physicians to import 53 Case Study CASE STUDIES at home and abroad. A team of doctors and scientists she had long encouraged marketed the oral anovulant birth control pill, and a resurgent feminist movement gave new resonance to her original claim that women have a fundamental right to control their own bodies. Hundreds of millions of women and men around the world today freely practice some method of contraception, with increasing reliance on condoms in light of the epidemic spread of HIV/ AIDS and other sexually transmitted infections.

This represents a sixfold increase since rates of population growth peaked in the 1960s. Still, half the world’s population today—nearly 3 billion people—are under the age of 25 years.

Problems associated with widespread poverty, food insecurity, and environmental degradation are widespread. There remains considerable unmet need for family planning, and there is tragically insufficient funding for research on new methods and for new programming to meet ever-increasing demand. Funding for both population and development programs has slowed dramatically, as other needs compete for funds and as concern now spreads about an aging and shrinking population in many countries where birthrates have sharply declined. The cycles of history repeat themselves.

Case Study Questions 1. Why was the expertise of effective birth control not widely shared, and why did it take the medical establishment so long to endorse policy change in this area? Clearly, the women’s movement was part of the opening of change in this area, but how did it contribute to the creation of knowledge? 2. Have there been changes in recent years in the broader environment that are analogous to the early adoption of birth control programs (e.g., RU-486, or the so-called morning after pill)? 3. Have these changes increased or limited access to birth control? Think through the acceptance of the expertise in this area and the ways in which it has contributed (or limited) the change in policy in this environment and the ways in which it has not been taken into account. 4. Can you illustrate how expertise is still about perception, both within professional fields and in the broader public? and World War II (1939-1945), stymied by the increasing cost and complexity of reaching those most in need and overwhelmed by the barrage of opposition it engendered. The issue remained mired in moral and religious controversy, even as its leadership determinedly embraced centrist politics and a sanitized message. When hard times encouraged attention to collective needs over individual rights and when the New Deal legitimized public responsibility for economic and social welfare, Sanger cannily replaced the birth control moniker with the more socially resonant family planning . She invented both terms and popularized them after consulting allies and friends. Having enjoyed Eleanor Roosevelt’s enthusiastic support and personal friendship in New York, Sanger went to Washington, DC in the 1930s, hoping that Congress would overturn the Comstock law and legalize contraceptive practice as a first step to her long-term goal of transferring responsibility and accountability for services from small, privately funded clinics to public health programs with appropriate resources and scale.

However, she failed to anticipate that the success of the Roosevelts would depend on a delicate balance of the votes of conservative urban Catholics in the north and rural, fundamentalist Protestants in the south. There would be no invitations to tea at the White House and no government support, at least until Franklin Roosevelt was safely ensconced in a third term. Embittered by these controversies and disenchanted with the country’s increasing pronatalism after World War II, Sanger turned her attentions abroad. In 1952 she founded the International Planned Parenthood Federation, with headquarters in London, as an umbrella for the national family planning associations that remain today in almost every country. By the time of her death in 1966, the cause for which she defiantly broke the law had achieved international stature. Although still a magnet for controversy, she was widely eulogized as one of the great emancipators of her time. She lived to see the U.S. Supreme Court provide constitutional protection for the use of contraceptives in Griswold v. Connecticut . She watched Lyndon Johnson incorporate family planning into America’s social welfare and foreign policy programs, fulfilling her singular vision of how to advance opportunity and prosperity, not to speak of human happiness, 54 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES to educate legislators about advanced practice nursing and how this type of nurse could address the healthcare needs of Arkansans. The study bill was assigned to the Interim Public Health, Welfare, and Labor Committee of both the state House of Representatives and the Senate. Several public hearings were held by the committee, and various groups and individuals—both in support and in opposition—were given the opportunity to voice their opinions. During the hearings, there were opportunities to provide correct information supported by the literature. Clarification of the proposed legislation was also on the agenda. At one point, concern was raised about the use of the term collaboration with medicine , as some persons preferred to use supervision or a definition that would limit the practice to one being supervised. The task force initiated a process to define the term collaboration . A review of the literature showed that collaboration had already been defined in the 1970s by both medicine and nursing. Armed with that information and definitions given by other sources, the task force reported their findings at the next hearing, and the definition jointly developed by medicine and nursing was incorporated into the proposed legislation.

Process for Success The leadership of the ArNA understood the monumental task and the many challenges and barriers to addressing the healthcare needs of Arkansans. The association decided that appointing a special task force to lead its efforts was the best strategy. This strategy provided a mechanism for focusing on the issue while ensuring that the health policy committee would continue to focus on broader policy issues. The association selected a chair, included the chair in member selection by ArNA leadership, and established the first meeting. As the process evolved, two cochairs, a secretary, and a treasurer were named. The task force was representative of nursing broadly and included members of the Arkansas State Board of Nursing, advanced practice nurses with master’s degrees (e.g., midwives, certified registered nurse anesthetists, nurse practitioners, and clinical nurse specialists), registered nurses, faculty from schools of nursing who prepared advanced practice nurses, and representatives from other nursing organizations.

The task force met every other week during the CASE STUDY External Stakeholder Power:

Successful Efforts to Pass Advanced Practice Nurse Legislation Claudia J. Beverly The Arkansas State Legislature meets every other year to conduct the business of the state. In the year preceding the legislative session, the Policy Committee of the Arkansas Nurses Association (ArNA) examines the healthcare needs of the state and designs a strategic health policy plan for nursing that will be introduced in the upcoming session. The work is always initiated with a clear understanding of the needs of the state’s citizens. In this rural state, 69 of the 75 counties are medically underserved. The poverty level is one of the worst in the country. The health statistics of Arkansans are in the bottom four states, and several counties do not have a single primary care provider. Given the many healthcare challenges facing the state, nurses are in a key position to address these needs, and society expects them to do so. In the early 1990s the ArNA, which represents all nurses in Arkansas, concluded that advanced practice nurses were best prepared to address the primary healthcare needs of Arkansans. At that time, however, there was no standardization or clear regulation for this level of nurse other than national certification and the registered nurse (RN) license that is basic for all levels of registered nurses. The ArNA’s first attempt to address the primary healthcare needs of the citizens was in 1993. Their attempt to pass legislation that would allow prescriptive authority by advanced practice nurses failed. After this failure, the ArNA, with the assistance of its lobbyist, began to develop legislation for introduction in the 1995 legislative session to provide a mechanism for advanced practice nurses to practice to the extent to which they are academically prepared. Additionally, a mechanism whereby society could be assured of safe practice by all providers needed to be in place. The process began when a legislator from a rural area with the greatest need introduced a study bill. This bill provided an opportunity for the ArNA 55 Case Study CASE STUDIES practice nurses were to be regulated by nursing, and the legislation acknowledged national certification and educational requirements. Prescriptive authority was granted, and selected scheduled drugs could be ordered by an advanced practice nurse. Reimbursement to advanced practice nurses was lost at the last minute. For advanced practice nurses in the field of geriatrics, Medicare passed reimbursement regulations in 1997. Medicaid reimburses geriatric nurse practitioners according to national guidelines. Reimbursement is critical to meeting the needs of Arkansas citizens and is a topic that is still being discussed. Many individuals participated in this successful campaign. A clear vision, legislation based on evidence and current literature, a comprehensive strategic plan, education of all parties (including those in opposition and those in support), and well-informed legislators were critical to success. Probably the most critical message in health policy legislation is to focus on the needs of the citizenry and what nursing needs to contribute.

Case Study Questions 1. We suspect that most nursing professionals can expand on this case; however, the key question is: What was the nature of building a stakeholder network? 2. Who were the critical first players in this movement, and why was their involvement critical? 3. As the network expanded, which other professional groups were involved? Why were those groups, and not others, involved? 4. Do you see why some professions were the logical next parts of the coalition for adopting change? 5. Who was most likely to oppose advanced practice nursing? Obviously, you do not include likely opponents in the initial development of the network of stakeholders, but why? 6. How did the coalition eventually succeed through this inclusive network? 7. What would you have done differently in a different practice arena? 8. What does this case study tell you about building stakeholders for advancing practice? 9. What would you need to do to apply this policy to advancing roles in your healthcare setting? first 6 months of the 2-year preparatory period, then weekly for the remaining year and a half. The first order of business was to develop a strategic plan that included establishing a vision, mission, goals and objectives, strategies, and time line. The vision was critical as a means of keeping task force members focused on the vast needs of Arkansans, particularly those in rural areas. The vision statement also served to keep the broader ArNA membership focused. A literature search on advanced practice nursing and health policy issues was conducted, and articles were distributed to all task force members. The assumption was that all of the members needed information to expand their current knowledge. Subcommittees were developed based on goals and objectives and the operational needs of the task force. Chairs were assigned for each subcommittee, and thus began the 2-year journey. The American Nurses Association (ANA) played a vital role in the process. The legal department was available to assemble and provide information, offer guidance, and identify potential barriers and challenges. The support provided by the ANA was pivotal to our success. The work of the task force focused on external and internal strategies. External strategies focused on stakeholders, which included the Arkansas Medical Society, the Arkansas Medical Board, and the Pharmacy Association. Understanding the views of our colleagues in other disciplines and identifying the opposition to our plans were critical to our success. Many meetings focused on educating those disciplines about the legislation we were seeking.

Often this was a balancing act, providing the right information but not too much of our strategy while attempting to keep our enemy close. We valued the process of negotiation and participated in many opportunities to negotiate with colleagues. Throughout this process, the ArNA did have a line in the sand, defined as the point at which there was no negotiation. Our line in the sand included regulations of advanced practice nurses by the Arkansas State Board of Nursing and reimbursement paid directly to the nurses. These two points were never resolved until a vote on the legislation occurred. The good news is that the advanced practice nurse legislation passed successfully in 1995. The legislation was successful in that the criteria for an advanced practice nurse to be licensed in the State of Arkansas were written by nursing, advanced 56 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES members of the Arkansas Department of Health (ADH) who are involved in the newborn screening program administration and laboratory testing, physicians from Arkansas Children’s Hospital genetic clinic, and interested parties that either work in the area of genetics or are parents of children with genetic conditions. The main purpose of the committee has been to coordinate care and to try to educate the public about genetic conditions and screening for newborns. The ADH receives samples from about 95% of the newborns in the state and does screening at their central location in Little Rock.

When an infant is identified with a newborn genetic condition, the ADH notifies the community hospital and the assigned pediatrician, who counsels the family and develops a plan for care and follow-up. Expanding the screening program to the existing March of Dimes List of 29 created several problems. The committee, however, felt strongly that it should take an advocacy role to address these concerns. The first problem was the cost of increased screening. Although most of the individual cost for each child could be absorbed by insurance or Medicaid reimbursement, as in other states, the initial financial support would need to be provided by the state. The ADH had no provision for increasing funding but estimated that the increased cost would be as follows: ■ Two million dollars for equipment and supplies ■ The addition of at least two more laboratory technicians to do the increased testing ■ The addition of at least one more public health nurse to coordinate the increased number of identified genetic cases ■ Training for new and current personnel on the new equipment ■ Personnel time to develop and coordinate the expansion of the program ■ Development of an education program to make parents and professionals aware of the changes.

Overall the estimated cost for start-up was approximately $3 million, some of which could be recouped after billing for the tests was established. The committee and ADH decided that we would outline a plan for expansion with CASE STUDY Internal Expertise Power:

Expanding Newborn Screening in Arkansas Ralph Vogel Strides in technology have created great advances in how we can provide services to families and their children. A prime example is the expansion of newborn screening, which has dramatically increased the number and type of genetic conditions that can be detected immediately after birth. Historically, most states have screened for hemoglobinopathies (like sickle cell anemia), thyroid disorders, phenylketonuria, and galactosemia. These conditions, along with newborn hearing screening, were relatively easy to administer at a cost-effective rate. With advanced laboratory and computer technology, we can now add multiple genetic conditions that are identified during a single run.

In 2004 the March of Dimes proposed expanding the genetic conditions for which newborns are screened to their List of 29, including several enzyme deficiencies and cystic fibrosis. The cost of the limited newborn screening had been approximately $15 per newborn, and it would increase to about $90 with the expanded list.

Insurance companies would cover the cost of adding the additional conditions. The value of newborn screening is in identifying genetic conditions early and implementing treatment plans from birth. Over a life span, this greatly reduces the morbidity and mortality associated with later diagnosis. With some conditions, the care can be as simple as a dietary change that is implemented from birth. Early diagnosis also allows for genetic counseling with families about the risk that additional children will have the condition. Many states adopted this recommendation quickly, although the process has been slower in others. In Arkansas a committee, titled the Arkansas Genetics Health Advisory Committee (formerly Service), has existed for several years. Its mission is to monitor health care related to genetics in the state. This diverse committee includes several 57 Case Study CASE STUDIES doing expanded screening of newborns, they were more receptive to our plan. After we started to discuss funding with legislators during the legislative session, they seemed willing to support newborn screening. But we had a surprise: They said it did not require any special legislation or special funding; the ADH could expand newborn screening without their approval because this was already within their realm of responsibility.

Funding could be obtained by submitting a budget request to cover the cost of expansion. The interim head of ADH was willing to support this because the head of the newborn screening section was on our committee. By fall we had the budget expansion approved and support for newborn screening expansion. The decision was then made to target July 1, 2008 as the date to start the expanded program. After we knew the finances and political support were confirmed, we developed a time line that involved equipment acquisition, training for ADH staff, an education program for the public, and a plan for making community hospitals and professional healthcare providers aware of the expansion. At this point the ADH contacted members of the media with whom it had worked in the past and developed a plan for public information advertisements to be run on television and radio. These began running in early May, 2 months before the July 1 start date. Because the media members had worked with ADH in the past, it was much easier to develop the advertisements.

Print media advertisements were also started, and the local chapter of the March of Dimes provided funding and brochures that were distributed to OB/GYN physicians in the state to make expectant mothers aware of the testing to be done on their newborns. One of the members of the committee also wrote an article that appeared in the March issue of the Arkansas State Board of Nursing Update magazine, which is distributed to 40,000 healthcare providers in the state. In July the expanded screening began, and it has been continued with a relatively smooth transition, largely because of the preparation of the ADH staff in the laboratory and the outreach nurses. Because of the public awareness campaign, there has been little voiced concern from parents, and there seems to be an awareness of the value of the expanded screening. estimated costs and submit it to the director of the ADH, Dr. Faye Bozeman. With his approval, we would then approach legislators and ask for the needed funding to be included in the upcoming budget. Because the Arkansas state legislature convened only every 2 years, it would be critical to move forward over the next 6 months. We prepared a letter to Dr.

Bozeman that the committee approved on a Friday with the intention of mailing it on the following Monday. The next day, Saturday, Dr.

Bozeman was killed in an accident on his farm; therefore, we were in a quandary about who should receive the letter and whose approval would be needed in the ADH. During the next 6 months there was an interim head, who was thrust into the position and did not want to approve anything at this level of expense. We were on hold until a permanent director was named. After about 3 months, we decided to take another tack and develop a plan to seek legislative approval for funding and then approach the new ADH director after the person was named. We developed a list of legislators to contact and identified members of the committee who had worked with the legislators in the past and could approach them. By this time, we were 2 months from the legislature convening and knew that after it convened nothing new would be introduced; therefore, we had to get support ahead of time. We approached some legislators and received tacit support, but none were willing to introduce a new bill or request funding without a permanent head of ADH. We had lost the opportunity for funding until the next legislative session in 2 years. The committee decided to continue to seek support from the legislators and ADH with the idea of gaining funding in 2 years. Meanwhile, we began to look at other states and what newborn screenings they were currently doing to make sure that politicians were aware of national standards.

We had identified that Arkansas was one of the last five states to not expand newborn screening, and all of the surrounding states in the region had incorporated all or a large part of the March of Dimes List of 29. Making legislators aware of this became one of our goals; once they realized that the states surrounding Arkansas were already 58 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES Final Case Study This final case study is presented to stimulate the reader’s political thinking. We encourage you to read the case carefully and then consider how you would go about creating an environ - ment for policy change. CASE STUDY Workplace Violence Steven L. Baumann and Eileen Levy In the wake of the terrorist attack of September 11, 2001 and a series of tragic school shootings, workplace violence has gained national attention in the United States. Although nurses and other healthcare workers are generally well educated and regularly reminded to practice good handwashing and infection control, there is little attention given to the potential for violence in hospitals and other healthcare settings, even though it is common and can have devastating long-term consequences (U.S. Department of Health and Human Services, 2002; U.S.

Department of Labor, 2004). According to Love and Morrison (2003), nurses who sustain injuries from patient assaults, in addition to suffering psychological trauma, are often out of work for periods of time, have financial problems, show decreased work productivity, make more errors at work, and report a decreased desire to remain a nurse. In addition to these problems, nurses who have been assaulted report feeling less able to provide appropriate care to their patients (Farrell, Bobrowski, & Bobrowski, 2006) and are reluctant to make formal complaints (Love & Morrison, 2003). As was the case with needlestick injuries in the past, many organizations do not openly discuss problems that increase the risk for violence, nor do they adequately prepare for episodes of violence, leaving nurses more likely to blame themselves for its occurrence. The National Institute for Occupational Safety and Health (NIOSH), the same organization that requires hospitals to be attentive to infection Lessons learned from the process are as follows: ■ Preparation is the key to a smooth transition. ■ Know exactly what is required to proceed and who needs to approve new or expanded plans of action. If we had approached the legislature first to find out what they wanted, we could have saved time. ■ Plan for the unexpected. We could not have anticipated Dr. Bozeman’s death, but it did cause about a 6-month delay. ■ Educate everyone who is going to be involved. This includes administrators, healthcare providers, laboratory staff, parents, and professionals in the impacted communities. ■ Discuss with the media exactly what they need and use their expertise in terms of length of announcements and the best ways to distribute information.

Although the entire process took more than 2 years, in the end the transition has been very smooth, and few problems have been identified at any level. Having a diverse group on the committee was a strength, because different members had different perspectives. This gave us much greater ability to anticipate problems and coordinate care, and in the end the program will benefit newborns in Arkansas for years to come.

Case Study Questions 1. This case is a good example of how the stakeholders adapted as the intended policy change moved from internal adoption of policy to legislation back to internal adoption of policy within an existing organization. Can you see how the nature of the stakeholders defined for a legislative change is different from stakeholders for adaptation of existing policy? 2. The initial group involved in this process was established primarily as an informational group, but it was modified to advocate change. How did the group evolve to influence policy differently? If the initial group had been more broadly defined at the start, would it have made the same mistake about requiring legislative change to adopt the policy? Why or why not? 59 Case Study CASE STUDIES the case study hospital reduced inpatient and outpatient addiction services. New research suggests that actively psychotic patients with schizophrenia and patients with schizophrenia who had a premorbid conduct problem or exposure to violence are more likely to be violent than less acutely ill patients and those without substance abuse or antisocial personality comorbidity (Swanson et al., 2008). Nevertheless, it is a mistake to consider persons with mental illness or substance abuse as the only individuals who can become agitated or violent in healthcare settings.

It is also shortsighted to solely blame any single policy, such as the deinstitutionalization of the chronically mentally ill, for workplace violence in the United States. At the same time that the case study hospital has cut beds and programs for persons in distress, it has a clear mission/vision/value statement that puts professional nurses in leadership positions and has taken steps to address workplace violence.

It has made efforts to reduce violence in high-risk areas, such as the emergency department and psychiatric unit, by restricting access to these areas, using surveillance equipment and panic buttons, and strictly requiring all staff to wear identification, as other hospitals have. Community hospitals, like the one in this case study, however, often do not provide the kind of ongoing self-defense and violence prevention education and training that many psychiatric hospitals provide. In addition, all hospitals should have a task force and regularly meeting committee consisting of management, human resources/employee relations, employee assistance program staff, security, and the office of chief counsel with the sole purpose of developing policies and procedures to prevent and address workplace violence. Following The Joint Commission’s (2008) lead, the case study hospital and nursing administration have hospital-wide discussions and training on behaviors that undermine a culture of safety. In addition, the hospital requires workplace violence risk assessment, hazard prevention and control, and safety and health training, as well as careful record keeping and program evaluation (U.S. Department of Labor, 2004). Hospitals need to keep in mind the malpractice crisis in this country. The move to put patients first does not turn over control of the hospital to patients or their families. Indeed, control strategies and proper handling of hazardous materials, also provides clear definitions and guidelines to reduce the potential for violence in the workplace. According to NIOSH, workplace violence includes acts of physical violence or threats of violence directed toward people on duty or at work (U.S. Department of Health and Human Services, 2002). NIOSH has recognized employer responsibilities in mitigating workplace violence and assisting employees who are victims (Love & Morrison, 2003). The U.S. government has required employers to provide safe workplaces since 1970 (U.S. Department of Labor, 2004). These federal guidelines call for hospitals and other organizations to incorporate written programs to assure job safety and security into the overall safety and health program for their facilities.

Violence prevention, they suggest, needs to have administrative commitment and employee involvement. This case study is of a moderate-sized, nonprofit community hospital in the New York metropolitan area. As in many parts of the United States, this hospital and the communities it serves are becoming increasingly crowded and diverse. In this environment of change and tension, the hospital is a meeting place of people, many not by choice but in crisis, bringing together dramatically different histories, backgrounds, educational attainment, and cultures. The hospital and its clinics have become increasingly stressful, unpredictable, and at times hostile places. For example, the use of hospitals as holding tanks for acutely disturbed and violent individuals, the release of mentally ill persons from public hospitals without adequate outpatient programs and follow-up services, and the accessibility of handguns and drugs in communities all contribute to hospital and community violence. A failure of leadership at various levels, as well as inadequate reimbursement from payers, has contributed to violence that can occur on its premises. The case study hospital, like most in the United States, has dramatically reduced the number of public psychiatric beds. Many of these former psychiatric patients have to rely on outpatient mental health services supported by community hospitals with a limited number of beds on one or two psychiatric units. In addition, 60 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES Case Study Conclusion A community hospital in the New York metropolitan area is presented as a case study of an organization struggling to carry out its mission in a way that facilitates the growth and well-being of its employees. The hospital is experiencing different pulls. On one hand, it has had to cut back on essential programs. On the other hand, the nurses and the central leadership in the hospital need to work together to avoid quick-fix solutions and suffer the failure of nerve that Friedman (2007) talked about. The busy hospital environment in a changing society is stressful and, at times, hostile and violent.

Nurses need to be effective leaders to help protect the integrity of the hospital as an organization—to maintain its self-definition. They can best do this by becoming as self-defined as possible and by consistently implementing federal guidelines to prevent and manage workplace violence.

Case Study Questions In this case there is a need for policy change—the need for workplace violence policies. Here is our challenge to the reader. Can you take our two components, both an internal and external role, and define what needs to be done to accomplish this policy change? We suggest that you define the work in terms of your most likely environment, whether it is a psychiatric facility or a hospital or clinic. How would you go about creating an environment for policy change here? Some core questions should guide you.

First, what key stakeholders are in the initial stakeholder group (i.e., those most likely to feel the strongest need for the policy)? Remember, it is essential that stakeholders are identifiable and represent a clear position on this topic. Can you identify both internal and external stakeholders?

Are they organized around various professional lines within your organization? How do you begin to create a shared view among these stakeholders? As you begin to broaden the network—an increasingly collaborative one—which groups should be brought into the discussion? Let us give you an example:

The human resource specialists in your organization will need to be involved at some point in creating a policy about the elimination and reduction of workplace violence. Should they, however, be in your initial set of stakeholders? Why or why not? to understand Friedman (2007) correctly, to put patients’ health and satisfaction first, the hospital needs effective leadership at the top and from its professional nurses. To prevent violence in the workplace, nurses need to strive to be as authentic in their patient contact as possible and to avoid detached impersonal interactions (Carlsson, Dahlberg, Ekcbergh, & Dahlberg, 2006). The case study hospital provides considerable avenues of reward for individual nurses and other staff members to advance themselves and stand out as innovative, which helps mitigate the tendency for workers to herd, that is, to avoid developing themselves and improving the institution for the sake of togetherness with selected coworkers (Friedman, 2007). The case study hospital does provide a psychiatric nurse practitioner on staff and onsite one day per week as an employee assistance provider. Having this person onsite provides an opportunity for hospital staff to be counseled on becoming less reactive to emotionally intense environments, as recommended by Friedman (2007). Healthcare organizations also need to provide referral information, such as to employee assistance programs or clinicians experienced in trauma care, for employees who may exhibit more serious and persistent reactions to perceived violence and aggression (Bernstein & Saladino, 2007). Nurses and nursing organizations should become more familiar with national guidelines and recommendations and persuade their hospitals to adopt and implement them. The process for nurses is to focus more on taking responsibility for their own condition, practice self-regulation, and have a wide repertoire of responses to stressful situations. Although this does not guarantee that violence will be avoided, it does make it less likely to happen and makes nurses better able to keep it in perspective. Friedman (2007) described this as being able to turn down the dial or volume.

Nurses need to be just as effective in managing toxic emotional environments as in handling toxic chemicals and infections. Nurses’ interpersonal effectiveness is increased when they look for and support strengths in others. Postincident debriefing helps transform the experience into a team building and learning opportunity.

Leaders should involve all staff and review events, including what precedes and follows an incident. 61 Case Study CASE STUDIES involved to reach a broad agreement about the issues that define the policy itself.

Case Study References Bernstein, K. S., & Saladino, J. P. (2007). Clinical assessment and management of psychiatric patients’ violent and aggressive behaviors in general hospital. Medsurg Nursing, 16 , 301–309. Carlsson, G., Dahlberg, K., Ekcbergh, M., & Dahlberg, H. (2006). Patients longing for authentic personal care: A phenomenological study of violent encounters in psychiatric settings. Issues in Mental Health Nursing, 27, 287–305. Farrell, G. A., Bobrowski, C., & Bobrowski, P. (2006). Scoping workplace aggression in nursing: Findings from an Australian study. Journal of Advanced Nursing, 55 , 778–787. Friedman, E. H. (2007). A failure of nerve: Leadership in the age of the quick fix . New York, NY: Seabury. Love, C. C., & Morrison, E. (2003). American Academy of Nursing expert panel on violence policy recommendation on workplace violence (adopted 2002). Issues in Mental Health Nursing, 24 , 599–604. Swanson, J. W., Van Dorn, R. A., Swartz, M. S., Smith, M., Elbogen, E. B., & Monahan, J. (2008). Alternative pathways to violence in persons with schizophrenia. The Role of Childhood Antisocial Behavior, 32 (3), 228–240. The Joint Commission. (2008, July). Behaviors that undermine a culture of safety. Retrieved from http://www.joint commission.org/assets/1/18/SEA_40.pdf U.S. Department of Health and Human Services. (2002). Violence: Occupational hazards in hospitals (Document #2002-101). Cincinnati, OH: National Institute for Occupational Safety and Health. U.S. Department of Labor. (2004). Guidelines for preventing workplace violence for health care & social service workers (OSHA 3148-01R). Washington, DC: Occupational Safety and Health Administration. Now are the more difficult questions:

■ What expertise is needed to make such a policy change? ■ What kinds of facts (someone has to gather the data in a systematic way) need to be gathered? ■ Are we discussing violence between patients and those providing medical services, or violence among fellow professionals within the organization? ■ What kind of violence and danger are we discussing here—physical or verbal violence, or both? ■ What about safety issues (including other types of danger to employees and patients)? ■ Would you agree that an emergency room might see these questions a bit differently from those handling financial claims (although both have real needs)? ■ How do you build expert power? Who shares it, and who might be expert in defining these issues over time?

As you create the case, think about developing it in two stages: the initial definition of the issues (expertise), and who needs a seat at the table (stakeholders) both inside and outside the organization. The second stage is writing and defining the policy. If the issue is defined well by all the stakeholders, the delineation of the necessary expertise of workforce violence will become a shared view among the stakeholders. Then, and only then, can one move to the writing of a policy about dealing with workplace violence. Do all the stakeholders need to be involved in writing that policy? We suggest that is not necessary for those 62 Chapter 3 A Policy Toolkit for Healthcare Providers and Activists CASE STUDIES 63 © Anthony Krikorian/Shutterstock SECTION 2 Population Health CHAPTER 4 Population Health Care: Access, Cost, and Quality CHAPTER 5 Global Health: A Vision for Action CHAPTER 6 Mental and Behavioral Health © Anthony Krikorian/Shutterstock Population Health Care:

Access, Cost, and Quality Marie Truglio-Londrigan and Sandra B. Lewenson OBJECTIVES ■ Understand nursing’s historical role in primary health care and care of vulnerable populations. ■ Discuss factors that have the potential to facilitate vulnerability. ■ Examine the relationship between vulnerability and disparity. OVERVIEW Vulnerability and living in a state of vulnerability have been experienced by individuals, families, communities, and populations over time. The strategies developed to improve the health of vulnerable populations, such as political advocacy and legislation, have evolved. To illustrate this unfolding evolution, this chapter has been developed from a historical to a contemporary perspective. The historical perspective highlights the work of nurses with vulnerable populations as these nurses engaged in political advocacy. It shows the work of one local rural community in upstate New York during the late 19th and early 20th centuries that joined forces to provide healthcare access, specifically nursing care, to those who typically lacked services. The more contemporary aspect of this chapter introduces vulnerability and its complexity as it is understood today, including what factors facilitate and sustain these vulnerabilities that lead to disparities. It also addresses the political advocacy required to assure and ensure access to care, as well as improve quality and limit cost. An interview with a contemporary public health nurse illustrates how public policy initiatives influence care delivered at the local level. This interview demonstrates how politics and policy play a role in how programs are developed, negotiated, and delivered, and, in turn, it addresses the health needs of vulnerable populations. (continues) 65 CHAPTER 4 ▸ Lessons from Nursing History on Vulnerability, Disparities, and Political Advocacy In 1922, noted nursing leaders and public health nursing activists Lavinia Dock and Fannie Clem - ent described how a pioneer rural nursing asso - ciation was started by a Johns Hopkins nursing school graduate, Ellen M. Wood, in the northern region of Westchester County, just north of New York City. This new service that began in 1898 provided families living in the northern reaches of the county, which is now considered a sub - urb but then was a rural setting, access to much- needed healthcare services. These services were not readily available because of geographic isola - tion and economic circumstances. The founding of the District Nursing Association of Northern Westchester County (DNA) pre-dated the start of the American Red Cross Rural Nursing Service, which began in 1912 and would later bring pub - lic health nursing to the far reaches of American life, where access to care was at a minimum and vulnerability was at a premium.

Wald’s Work This was not an entirely new concept, but it is a good example for understanding the relation - ship between the lack of access and the politics of health. Noted public health leader Lillian Wald had already established primary health - care services in 1893 on New York City’s Lower East Side at the Henry Street Settlement, bringing vital nursing services to immigrant populations who came to New York seeking a better way of life (Keeling & Lewenson, 2013). It was Wald who recognized that all citizens, whether in the crowded urban environment or in isolated rural areas, required healthcare services. She started the visionary American Red Cross Rural Nursing Service in 1912 and called for addi - tional educational training for public health nurses, in both urban and rural communities (Keeling & Lewenson, 2013). Wald also was a leader in advocating for healthcare reforms in New York City, effecting local laws to include placing school nurses in public schools, estab - lishing playgrounds where children in crowded urban settings could play, and supporting ten - ement laws to protect the health of people who lived in unhealthy conditions. In addition, Wald and many of her colleagues at the Henry Street Settlement, including Lavinia Dock, advocated for women’s suffrage to pro - tect the health of the public (Lewenson, 1996).

Dock called for nursing professionals “to look at social and political problems and include so - cial reform among their professional obligations” (Lewenson, 1996, p. 144). For many nurses during this period of social activism, “nurses’ concerns with injustices in the world rendered their political involvement unavoidable” (Lewenson, 1996, p. 150). The late 19th and early 20th centuries were a time of professional advancement, polit - ical advocacy, and local commitment to better - ing health care for populations. The women in northern Westchester County were part of this ■ Explore the relationships among ethical norms, ideas, values, and beliefs related to the public policy agenda. ■ Describe how nursing ideas, values, and beliefs play a role in setting the policy agenda. ■ Consider the role that politics, policy, and law have in protecting the rights of vulnerable populations. OBJECTIVES (continued) 66 Chapter 4 Population Health Care: Access, Cost, and Quality progressive movement and led healthcare reform efforts in their community.

Ellen Wood and the Use of Political Advocacy The Wood family had a long history of caring for their rural neighbors prior to Ellen Wood’s entrance into nurses’ training at Johns Hopkins Training School for Nurses. Her brother, Holling - sworth Wood, wrote about his sister, “she decided to experience the training then given to nurses in order to take the best possible care of her neighbors” (District Nursing Association of Northern Westchester County [DNA], 1948, p. 13). When Ellen Wood graduated in 1896 * she returned home and brought the nursing skills she learned at Johns Hopkins to her neighbors.

Her brother wrote, “At first her daily rounds were made on foot, but soon her circle widened as cases of sickness in the remoter county districts came to her knowledge, until presently a horse and buggy were needed to take her to her pa - tients” (DNA, 1948, p. 14). In these early years, Wood provided skilled nursing care and taught families how to care for themselves in her ab - sence. Her work was considered “instructive, preventive, and social service work” (DNA, 1948, p. 14). When the Spanish-American War broke out in 1898, Wood volunteered to serve and was as - signed as superintendent of nurses at the Fort Hamilton Army base located in Brooklyn, New York. The Spanish-American War lasted less than a year, starting on April 25, 1898, and ending with the signing of Treaty of Paris on Decem - ber 10, 1898. Wood’s work in the American Red Cross continued following the war. She served on a committee to establish an Army Nurse Corps, something that professional nursing leaders also advocated. Wood worked alongside nursing lead - ers like Mary Adelaide Nutting, Anna Maxwell, Irene H. Sutliffe, and Isabel Hampton Robb in their efforts to have nursing recognized in the military. These leaders found support from sev - eral social-minded women who supported nurs - ing’s efforts in this area, including Mrs. Winthrop Cowdin, who later helped Wood establish the rural nursing service in their upstate commu - nity (Dock & Clement, 1922). With the support of her family and friends, Wood went on to begin the DNA following the war. The women began the DNA with $250, which were the funds that remained after their short-lived Red Cross Auxiliary that they started to support the local men who fought in the Spanish-American War.

Four committees gathered the needed equip - ment either through loans or purchases to sup - port this new endeavor. They collected items such as hot water bags, rubber sheets, sheets, towels, diapers, ice caps, thermometers, soap, Vaseline, bandages, and other items that were needed for care in the home. They provided instruction for home care to practical nurses and arranged for a “special nurse” from New York City to come to their community when needed (DNA, 1948, p. 15). The organizers of the DNA also asked community members to join by paying a $1 annual membership fee. These dues, along with other fundraising activities, donations, and fees charged for nurses’ visits, financed the growth of the organization. In ad - dition, money from two insurance companies— Metropolitan Life Insurance Company and John Hancock Insurance Company—paid for nursing services for their policyholders. For those who could not pay, the DNA provided services free of charge. The DNA organizers believed that trained nurses needed to bring health care to their rural communities and spoke highly of their pioneer - ing effort. They acknowledged the challenges they faced when starting the association and recognized that although district nursing ex - isted already in cities like Boston, New York, * In an email dated February 28, 2013, archivist Marjorie Kehoe at Johns Hopkins University wrote that Ellen Wood graduated in 1895 and received postgraduate training in obstetrical nursing in 1896. Lessons from Nursing History on Vulnerability, Disparities, and Political Advocacy 67 Auxiliary during the Spanish-American War in 1899, and then again when they lobbied in Washington, DC for the establishment of an Army Nurses’ Corps (Sarnecky, 1999). They were accustomed to working toward provid - ing access to care, whether on the battlefield or in the civilian community, and sought sup - port from organized nursing, local boards of health, other healthcare professionals, and in - surance companies. The history of the DNA shows how nurses in the past responded to primary healthcare needs, collaborated intra- and interprofession - ally, and recognized the value of political advo - cacy for that care. This narrative about the 1920s era captures how nurses have responded to the needs of vulnerable populations on a local level and perhaps can help us shape how we consider the advocacy role that nurses continue to have in the 21st century. It also shows the collabo - rative nature of nurse advocates as they joined the work of rural and urban efforts (DNA and Henry Street Settlement, respectively). When a nurse was needed to care for a young camper at Henry Street’s camp in the rural Westchester County, the urban settlement house contacted the DNA in Katonah for aid: Late one summer evening a call came from Henry Street Settlement asking if it were possible to send a nurse to their camp at Secor’s Lake where a boy had been taken very ill. There was no nurse, the camp doctor had gone to New York, and there was no night train. The need was urgent and Katonah was the only point of contact because there was a visiting nurse there. It took some time to locate the camp, but at last the livery man was awakened and the willing nurse set off with the livery team in a violent thunder storm. The picture she found was a gloomy one.

The boy had been removed to a vacant barn for fear of contagion. The nurse stayed for hours doing all she could for his comfort, but the next day he was Buffalo, and Baltimore, none yet existed in ru - ral communities. These women believed, like other reformers of that period, that health care must be learned and that nurses in the commu - nity could implement the ideas of sanitary re - form by teaching the women in the community.

Convincing the community of the need for pub - lic health nurses also meant winning the sup - port of local physicians. Stories about the need to gain support from physicians, who often re - fused to accept their professional nursing col - leagues, include the following from one of the early pioneers, Miss Luquer: I remember sending the nurse to a patient who lived near me. I begged the doctor for his permission. He finally consented. I got the nurse and took her to the neighbor. She made the patient so comfortable that when the doctor called, she thanked him again and again for sending the nurse. He never said a word, but neither did he ever call the nurse again. (DNA, 1948, pp. 20–21) Although it was not always successful in the beginning, the writers of the DNA’s history noted that physicians ultimately became the organization’s “mainstay” (DNA, 1948, p. 21). Without calling the rural communities vul - nerable , the late 19th- and early 20th-century community activists, mostly women, joined forces with early public health nurses to provide care to those in need and to those living in rural northern Westchester County. Like in other rural settings, the lack of adequate roadways, hospi - tals, health departments, and healthcare facilities contributed to the vulnerability of the families in this community. The women who joined forces with Wood advocated for the start of the visit - ing nurses services that Wood and other nurses could provide. These women believed that join - ing people together was key to meeting the needs of those who required care. People must just “go ahead and do it” (DNA, 1948, p. 47). They were used to working together, as demonstrated in their earlier work in establishing a Red Cross 68 Chapter 4 Population Health Care: Access, Cost, and Quality collaboration with local governmental agencies like health departments, school boards, and local Chambers of Commerce to provide such care.

The ability of the activists and the families in the northern Westchester community during the late 19th and early 20th centuries to work together and address the needs of the commu - nity offers insight into today’s need for strong community partnerships, political advocacy for those who need healthcare services, and the recognition of nursing’s role in providing pri - mary health care in rural settings.

▸ The Face of Vulnerability Today Nursing’s history and historical leaders give us pause as we think about how nurses have always played a role in consideration of those most vulnerable. Contemplating that which was documented in the first part of this chapter illustrates some of these leaders and their pioneer work. The iconic image of the nurse climbing removed to a New York hospital where he died. Miss Wald’s letter received later spoke with appreciation of the “link of co-operation” which brought help to the boy, and relief to the Henry Street Settlement from the Nursing Association of Northern Westchester.

(DNA, 1948, p. 52) Vulnerability can happen in any popu - lation living in urban or rural settings, and it is often compounded by race, class, and gen - der. As this historical example shows, nursing attempted to provide care to vulnerable popu - lations in rural settings and urban settings. The DNA, the American Red Cross Rural Nursing Service, and the Henry Street Settlement on the Lower East Side of New York City are just a few exemplars of how nurses cared for the populations living in the community. Nurses in each of these community-based organiza - tions offered primary healthcare services, such as well-baby classes for new mothers, bedside care in the home for those in need, coordina - tion of care with other healthcare providers, and REFLECTION AND DISCUSSION Before you continue reading this chapter, consider the work of these past nursing leaders and engage in the following reflection and discussions:

1. Describe the communities and the population living within these communities t\ hat Lillian Wald and Ellen Wood served. 2. What were the major needs of the population during that time? Is there evidence of their vulnerability and disparities? 3. Were services available and accessible? 4. What were the reasons for the limited availability and access to these needed services? 5. What role did geography and economics play at the time? 6. What skills did these past nursing leaders possess and what can we learn from them for our contemporary practice? 7. What questions do you suppose these nursing leaders ask during periods of quiet self-reflection? 8. How do you suppose these past nursing leaders engaged others in their quest to develop services that were both available and accessible? 9. How did they develop and expand opportunities for those they served? 10. How is this related to social activism and social justice? 11. Considering the stories from the past, what were the core factors that facilitated these nurses in these transformational endeavors? The Face of Vulnerability Today 69 Taking a Closer Look at Vulnerable Populations Public health initiatives throughout the 20th century made strides in addressing vulnerabil - ity. Yet, despite these strides, there are still “vul - nerable populations left behind” (Institute for Alternative Futures, n.d., p. 8). Some of these identified populations are as follows: high-risk mothers and infants; people who are chronically malnourished, homeless, ill, or disabled; people who are living with human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) (including pediatric AIDS cases); people who abuse alcohol and drugs (includ - ing fetal alcohol syndrome and crack babies); people with health problems caused by chemical exposures; people who are mentally ill; veterans who suffer from posttraumatic stress disorder (PTSD); abusive families and relationships; gays and lesbians who suffer from discrimina - tion; foster youth who are aging out of the foster care system; prisoners; and American Indians (Institute for Alternative Futures, n.d. pp. 8–9). Discussions pertaining to vulnerability focus on individuals, families, and communities—but, the greater focus is on the population perspec - tive. It is important to recognize, however, that individuals make up populations. An individ - ual who is a member of a vulnerable population may not experience vulnerability; conversely, an individual who is a member of a nonvulnera - ble population may be vulnerable due to per - sonal life events (de Chesnay, 2011). Changes in social, economic, and political contexts may create a state of vulnerability for an individual, such as an illness, a loss of a job, a move to an unfamiliar environment, or the loss of a loved one (Benatar, 2013; de Chesnay, 2011; Rogers, 1997). Vulnerability is a complex concept involv - ing life experience that requires understanding of the vagaries of life; an understanding of this complexity can help avoid stereotyping individ - uals and populations. Conversations about who vulnerable peo - ple are and the risk factors that precipitate the openness or exposure leading to vulnerability over rooftops in New York City is a visual im - age to which all nurses have been introduced throughout their education and professional ex - perience. Ensuring and assuring that vulnerable populations have access to the care they need was not only at the forefront of nursing prac - tice in years gone by; it continues to play an im - portant part of the professional responsibility of nurses today. In contemporary practice the re - sponsibility of providers to assure and ensure access is even more crucial along with quality and cost as the trifecta of the “overriding goals of change” (Cox, 2009, p. 217). Vulnerability and vulnerable populations have been defined as “those at greater risk for poor health status and health care access” (Shi & Stevens, 2005, p. 148). There are certain factors that place these individual and pop - ulations at risk. These risk factors are varied and many. A scoping review of the literature by Grabovshi, Loignon, and Fortin (2013) pro - vided evidence that there is the coexistence of multiple risks, frequently noted as multivul - nerability, including: poverty, especially in relation to a specific racial/ethnic minority group; chronic physical or mental illness; lack of insurance; older age; incarceration; immigrant status; limited formal education; living in underserved areas; unemployment; widowed; and homelessness (p. 7). Given the possibility of the multiple risks, Shi, Stevens, Lebrun, Faed, and Tsai (2008) introduced the idea of “risk profiles” (p. 846). These authors noted that the ability to identify risk profiles enables the healthcare system and provid - ers to explore the influence of these multiple risks in certain populations in terms of access to care and use of that care. For example, risk profiles may facilitate an understanding of the presence of a “dose– response relation - ship,” with increasing number of risk factors increasing the likelihood of delaying care (p. 851). In addition, risk profiles allow for vulnerability and disparities to be viewed as the complex constructs that they are, and to consider strategies of a more complex nature inclusive of advocacy and policy.

70 Chapter 4 Population Health Care: Access, Cost, and Quality ineligible to enroll in Medicaid creates long-term economic concerns that add to her stress and ability to recover. Rose’s inability to drive, lack of funds, emotional and physical loss, geographic isolation, and limited social supports and networks pertaining to family and community, as well as the lack of local physical therapy compound her increasing vulnerability and thus her health outcomes. As we will see later in this chapter, Healthy People 2020 considers health services to be one of the determinants of health; it supports the increasingly untoward experience of Rose and the need to advocate for better health services to achieve the desired health outcomes and is concerned with the other factors that compound her increasingly vulnerable state (U.S. Department of Health and Human Services [USDHHS], 2010b).

While this case study is about one individual, this one case is representative of a population in need of care and the risks associated with vulnerability.

Case Study Questions 1. Who is the population that Rose represents? 2. What risks are present that foster Rose’s vulnerability? 3. What disparities can you identify that are evident in health care and health outcomes? 4. What is the potential role for a political advocacy initiative? Mechanic and Tanner (2007) also identified that vulnerability results from “developmental prob - lems, personal incapacities, disadvantaged so - cial status, inadequacy of interpersonal networks and supports, degraded neighborhoods and en - vironments, and the complex interactions of these factors over the life course” (p. 1200) and may arise from challenges evidenced not only in populations but in individuals and communities (de Chesnay, 2011; Mechanic & Tanner, 2007).

The following case study depicts how an older adult, experiencing aging changes, is at greater risk for vulnerability and disparities. It is interest - ing to note that this individual is representative of other older adults and raises the real possi - bility that the population of older adults may be at risk for similar vulnerabilities and disparities. is crucial yet difficult. The tendency is to speak of each factor in isolation—such as age, eco - nomic status, lack of education, loss of a job, and so forth—but they coexist and there is an interplay between and among the risks, enhanc - ing the complexity of being vulnerable. This highlights the multifactorial nature of vulner - ability (Flaskerud & Winslow, 2010). Stevens, Shi, and Faed (2008) further explain this phe - nomenon as being “vulnerable in more than one way” (p. 902). Aday (2003) furthered this conversation by illustrating how vulnerability may be considered from community and indi - vidual perspectives and examines the relation - ships among concepts such as ethical norms and values and policy (social and economic policy, community-oriented health policy, and medi - cal care and public health policy). We, the au - thors of this chapter, suggest that Aday’s use of the term medical care does not adequately repre - sent the expansiveness of the needs of any popu - lation, and we propose that a broader term, such as health care and public policy , would be more useful. In addition, we also suggest that family perspectives are important to consider in any model pertaining to vulnerability. An example of the complexity of vulnerability is noted in the case study about Rose located below . CASE STUDY Rose is a 42-year-old Hispanic female who immigrated to the United States; she is educated at the master’s level and employed as an office worker. Rose had a stroke that left her with left-sided hemiplegia. She finds herself socially and physically isolated from family and friends as a result of living in a rural setting. Rose loses custody of her two children to her ex-husband and finds that her new live-in fiancé of less than 1 year (and her sole caretaker following the stroke) no longer wants to marry her. The economic vulnerability affecting her physical and mental recovery is compounded when she learns that the remaining disability payments from her job, which she can no longer perform, will be gone within a year. Being Case Study 71 3. What disparities can you identify that are evident in health care and health outcomes? 4. What is the potential role for a political advocacy initiative? Differences in Health and Health Care The relationship between vulnerability and healthcare disparities is correlational in that “the people with the greatest health care needs re - ceive the least health care services” (Grabovschi, Loignon, & Fortin, 2013, p. 2). Furthermore, these authors suggest that “people who accumu - late more vulnerability factors are more likely to face health care disparities” (p. 7). Disparities are referred to as “. . . differences in health and health care between population groups” (Ubri & Artiga, 2016, p. 1). The Agency for Healthcare Research and Quality (AHRQ) has reported on healthcare quality and disparities since 2003. The National Healthcare Quality and Disparities Report (QDR) is published annually and provides an overview of the quality of health care received by the U.S. population as well as the disparities in care experienced by different racial, ethnic, and socioeconomic groups. The National Healthcare Disparities Report (2011) highlighted that Americans who experience disparities have the following characteristics:

■ They do not receive care they need, and/or ■ The care they received causes harm, and/or ■ The care was delivered without consideration of the patient’s preferences. ■ The care was distributed in a way that was inefficient and uneven across populations.

It appears, therefore, that there are certain situations that place certain populations at risk, making them vulnerable to disparities in terms of access to care, quality care, and cost of care that ultimately affects disease outcomes, leading to disparities not only in terms of differences in health status between and within populations, but the type of care received by different popu - lations. For example, just because a healthcare service is available to an individual, family, or CASE STUDY A 75-year-old active man named Joe has been living independently in his chosen community for the past 6 months after the death of his wife.

He has been experiencing normal aging changes; as a result, his family notes a difference in his ability to engage in activities of daily living and instrumental activities of daily living. In particular, Joe has not been able to go to follow-up appointments with his primary healthcare provider, attend lunch outings with his friends, or make needed trips to the pharmacy and grocery store. In addition, he has experienced several minor car accidents during his outings that frightened him and caused him to abandon these once enjoyable trips. These aging changes have introduced vulnerability into Joe’s life. This new vulnerability places Joe at risk for negative health outcomes. Furthermore, Joe’s family has been negotiating the health and social networks of Joe’s community to look for social support since he has expressed great sadness over the loss of his wife. They have noted that there is a limited network of support that would permit him to age successfully and safely in place; thus, Joe is vulnerable and at risk.

Case Study Questions 1. Who is the population that Joe represents? 2. What risks are present that foster Joe’s vulnerability? 72 Chapter 4 Population Health Care: Access, Cost, and Quality to die than infants born to women of other races/ ethnicities; higher rates of new HIV in racial and ethnic minorities are noted, except for Asians/ Pacific Islanders (CDC, 2011). Despite the fact that there have been some improvements in the existence of disparities in our nation, there is still work that needs to be done. It is clear that racial and ethnic minority populations often receive poorer quality care and face more barriers in seeking care than do non-Hispanic whites. These disparities can lead to poor health outcomes as well as higher health - care costs. Vulnerability and disparities must be addressed along with attention to quality, as well as the direct and indirect costs. The direct expenses are affiliated with the provision care once accessed and the indirect costs from out - comes such as lost productivity and lost wages (LaVeist, Gaskin, & Richard, 2009).

▸ Vulnerability and Disparities from a Population-Based Perspective As previously noted, progress has been made, but more still needs to be done. A recent National Healthcare Quality and Disparities Report (2015) identifies three aims. These aims act as a guide to improve national disparities and include: 1. Improve overall quality, by making care patient centered, reliable, acces - sible, safe, and focused on achieving meaningful health outcomes. 2. Improve the health of the U.S. population by supporting proven interventions that are based in evidence to address behavioral, social, and, environmental determinants of health. 3. Reduce the cost of quality health care for individuals, families, com - munities, populations, employers, and the government. population does not mean that these potential end users will make use of the service. There - fore, just because a healthcare service is tech - nically available, if it is not accessed and used is it really available? In other words, building it does not mean that they will come. There may be multiple barriers to accessing that health ser - vice such as: geography, limited or no transpor - tation, cost of transportation, limited physical or mental health in terms of the individuals’ abil - ity to travel to the service, lack of awareness of the service, fear due to immigration status, lim - ited literacy, and care deemed not acceptable, satisfactory, or culturally congruent by the in - tended user. There are examples of population-specific disparities. Black and Hispanic populations are less likely than whites to have a usual place to go for health care—thus limited access (AHRQ, 2015). Children with only Medicaid or Children’s Health Insurance Program (CHIP) are less likely to get care when needed compared with children with other forms of insurance (AHRQ, 2014).

Ultimately, delays in care access result in poor outcomes as evidenced by increases in morbid - ity and mortality (Ubri & Artiga, 2016). There is also evidence to suggest that barriers to qual - ity care are significant in households of limited income (AHRQ, 2014, 2015). Certain populations will present with higher rates of certain diseases and health conditions along with poor outcomes. For example, chronic diseases such as heart disease, diabetes, stroke, and cancer are more common for specific pop - ulations such as non-Hispanic blacks, Hispan - ics, American Indians, Alaska Natives, Asians, Native Hawaiians, and Pacific Islanders (Centers for Disease Control [CDC], 2016). Non-Hispanic blacks are also 40% more likely than non-Hispanic whites to have high blood pressure and the rate of diagnosed diabetes is 77% higher among non- Hispanic blacks, 66% higher among Hispanics, and 18% higher among Asians than among non- Hispanic whites (CDC, 2016). Additional examples of health disparities in other populations include infant mortality rates that identify infants born to black women as being 1.5 to 3 times more likely Vulnerability and Disparities from a Population-Based Perspective 73 do collectively to assure the conditions in which people can be healthy” (p. 1). How we as a society assure the health of our public is through the application of a comprehensive public health framework that begins with the three core functions of public health: as - sessment, policy development, and assurance (IOM, 1988) along with the 10 essential pub - lic health services determined by the USDHHS and CDC. A visual image depicting these core functions and essential public health services is seen in FIGURE 4 -1. The question remains: How? How do we as a nation address these challenges in a systematic way that utilizes the best evidence of the time?

Derose, Gresenz, and Ringel (2011) propose that application of our public health framework as a means to address vulnerability and disparities enhances access of services.

Public Health Framework The Institute of Medicine (IOM) (1988) de - fined public health as “what we, as a society, FIGURE 4-1 Three core functions of public health Data from Institute of Medicine. (1988). The future of public health. Washington, DC: National Academies Press; U.S. Department of Health and Human Services. (1994). The public health workforce: An agenda for the 21st century. Washington, DC: U.S. Government Printing Office; Centers for Disease Control and Prevention. (2015). Core functions of public health and how they relate to the 10 essential services. Retrieved from http://www.cdc.gov/nceh/ehs/ephli/core_ess.htm Inform, educat e, and empo wer people about health issues .

Mobiliz e communit y par tner ships to identify and sol ve health pr oblems .

De velop policies and plans that suppor t individual and communit y efforts.

Monit or health status to identify communit y health pr ob lems.

Diagnose and in vestig ate health pr oblems and health hazar ds in the communit y. Enf orce la ws and r egulations that pr otect health and ensur e safety.

Link people to needed pers onal health ser vices and ensur e the provision of health car e when otherwise unav ailable.

Ensure a compet ent pub lic health and pers onal healthcare wo rkforc e.

Ev aluat e effectiv eness , accessibility , and quality of per sonal and population-based health ser vices .

Re sear ch ne w insights and inno vative solutions to health pr oblems .

Assessment P olicy de velopment and planning Thr ee cor e functions of pub lic health Assurance 74 Chapter 4 Population Health Care: Access, Cost, and Quality Social Factors Social factors are not all-inclusive but offer some evidence as to the strong influence of so - cial determinants on vulnerability. Shi, Stevens, Faed, and Tsai (2008) stated that the healthcare professions are now understanding the impact that “social position and social class, racism and discrimination, social networks, and other more relational community factors have on popula - tion health” (p. 43). And, Carthon (2017) stated that “racial and ethnic minorities in the United States have endured long-standing health dis - parities” (p. 3). Furthermore, factors that have the poten - tial to facilitate vulnerability—such as education, income, occupation, social networks, and social support—correlate with health outcomes. These social determinants of health have been posi - tively associated with employment and higher paying jobs with benefits that result in favor - able health outcomes (Moscou, 2017). This has been seen over time. One example can be found in the work of Carthon (2011) in which the au - thor presented a historical study of the physi - cal and social environments of blacks in early 20th-century Philadelphia. In what would fit under the description of today’s Healthy Peo - ple 2020 social determinants of health, the black community was faced with economic hardships, housing shortages, insufficient toileting, lack of clean water, lack of educational opportuni - ties, and limited social relief. This community banded together to address these issues through community activism. They organized the Little Mother Club, which offered health education to childbearing women as a means to reduce in - fant mortality in the city.

Health Services Health services, as a determinant of health, refers to both access to and quality of healthcare ser - vices (USDHHS, 2010c). Vulnerable populations include those who are “not well integrated into the health care system because of ethnic, cultural, economic, geographic, or health characteristics” (Urban Institute, 2010, para. 1). Because of this Carrying out an assessment is a systematic process that includes the gathering of infor - mation about individuals, families, communi - ties, systems, and the population. Information is gathered by interview and observations; in - formation can also be retrieved from large da - tabases about the population of interest. These large databases offer a wide variety of informa - tion such as vital statistics, as well as morbidity, mortality, incidence, and prevalence rates, just to name a few. Those working with populations may analyze this information over a period of years searching for trends in specific populations.

This analysis will offer information about which populations are exposed to risks, vulnerability, and disparities. In addition, assessment includes details about the history of the community, ge - ography, and environmental hazards and ben - efits (Truglio-Londrigan & Lewenson, 2017).

Factors and Precipitators Leading to Potential Vulnerability An important part of this population-based as - sessment is the gathering of information about the determinants of health that include those factors or precipitators that can place individu - als and the population at risk for being vulnera - ble and thus determine their health—as well as their part of the vulnerable risk profile. These categories, as identified in Healthy People 2020, include social factors, health services, individ - ual behavior, biology and genetics, and policy making (USDHHS, 2010a). Social factors, as determinants of health, are subdivided into social determinants and physical determinants. Some examples of so - cial determinants include the following: avail - ability of resources; social norms and attitudes, such as discrimination; crime and violence; so - cial support; social networks and social interac - tions; socioeconomic conditions; transportation; and safety. Examples of physical determinants include the following: the built environment, housing, and environmental exposure to toxic substances (USDHHS, 2010b). Vulnerability and Disparities from a Population-Based Perspective 75 she is experiencing, age plays a factor because she is a mother of two young children and is no longer able to care for them due to her disabil - ity. As a result, she faces a change in custody.

According to Aday (2003), “People are more or less vulnerable at different states of their lives” (p. 54). For example, older adults experience normal aging changes (Smith & Cotta, 2012) and an increase in the incidence of chronic ill - ness (Federal Interagency Forum on Aging-Re - lated Statistics, 2012). These alterations in health may precipitate vulnerability along with the po - tential for negative health outcomes.

Policy Making Finally, policy making, as a determinant of health, may have an impact on health outcomes. For example, increasing taxes on tobacco sales may correlate with decreased sales of cigarettes, or laws may facilitate greater safety and a decrease in injury rates (USDHHS, 2010g). Another ex - ample shows how changes in political leader - ship in government can affect advocacy and the health of the vulnerable. The 2017 budget proposed by the Trump administration threat - ens to cut funding for specific programs. Meals on Wheels, a program that provides food to the elderly in their homes; Supplemental Nutrition Assistance Program (SNAP), a program that provides food for children; and Planned Parent - hood, a program that provides women’s health care are just a few examples of how policy on the national and state level can potentially af - fect the most vulnerable in our society (Paletta & Costa, 2017). The importance of health deter - minants as risks or precipitators of vulnerability in individuals or populations cannot be under - estimated as nurses and other healthcare pro - viders seek to address disparities with the goal of improving health outcomes and in achieving equity. According to the American Nurses As - sociation (ANA) (2015), the integration of so - cial justice is a responsibility of the profession and individual nurses who “. . . must be vigilant and take action to influence leaders, legisla - tors, governmental agencies, non-governmental lack of integration, they are put at further risk.

This lack of access may mean that the population, and the individuals who are part of that popula - tion, may not be aware of needed resources or how to navigate the complex healthcare system.

As a result, they are not able to avail themselves of services, further facilitating their vulnera - bility (Gallagher & Truglio-Londrigan, 2004; Krout, 1986, 1994; USDHHS, 2010d; Williams, Ebrite, & Redford, 1991). As a result, they never were integrated into the system and thus were left behind. An individual who does not have access to needed healthcare services due to bar - riers such as cost, lack of availability, geographic location, or language may be at risk for being vulnerable and present with negative health out - comes (USDHHS, 2010d).

Individual Behavior Individual behavior, as a determinant of health, refers to personal choices regarding diet, physi - cal activity, or the use of substances. The choices a person makes may have a direct implication on health (USDHHS, 2010e). Note that even though public health is generally about care to populations, individuals make up the popula - tion; therefore, individual behavior along with collective behaviors of families and even com - munities are part of a public health framework.

Biology and Genetics Biology and genetics, as a determinant of health, refer to factors such as age, gender, and genetic predisposition (USDHHS, 2010f ), which are not under an individual’s control. There may be sit - uations when these specific factors place an in - dividual or population at risk, thus facilitating vulnerability with potential negative health out - comes. Age, for example, may have an impact on whether an individual is vulnerable, as evi - denced in the case study about Joe and his in - creasing vulnerability and potential for adverse health outcomes. Yet in the case study of Rose, who is only 42 years of age and not typically part of a vulnerable population for the kind of illness 76 Chapter 4 Population Health Care: Access, Cost, and Quality with regard to economics and the never-ending debate regarding the health of our people, it is a question that warrants a courageous and crucial conversation (Patterson, Grenny, McMillan, & Switzler, 2012). Fairman and D’Antonio (2013) speak about this national conversation through - out U.S. history, as seen in debates triggered by Social Security legislation in the 1930s, Medicaid and Medicare in the 1960s, and now the Affordable Care Act (ACA) of 2010 and its proposed repeal. Rogers (1997) discussed how certain fac - tors that lead to vulnerability are nonmodifiable, such as age and gender, and how others, such as poverty, education, and social support, are mod - ifiable. Nurses, for example, with their knowl - edge base, are in a prime position to develop strategies to address these modifiable and non - modifiable factors that may lead to vulnerabil - ity and disparity. According to Benatar (2013), the common response in terms of protecting the health and rights of vulnerable people is through the law. There is, however, conflicting discourse about this very notion of responsibility and ac - countability. Some say the responsibility rests solely with the individual, and others say it is a collective responsibility. This directly impacts politics and the policy agenda. Even if there were agreement that health is a collective responsibility, as argued by Benatar (2013), and if responsibility were carried out through law, the laws themselves do not guar - antee social justices. This is further explicated by Mechanic and Tanner (2007): Federal and state government are more likely to provide assistance to those who are not seen as responsible for their vulnerability, such as children, the blind, disabled veterans, and the elderly. When people are seen as responsible for their life circumstance, such as in the case of substance abusers . . . There is less public compassion and often stigma. (p. 1222) This idea is further supported by Truglio (2017) who put forth the idea that governments organizations, and international bodies in all re - lated health affairs to address the social deter - minants of health” (p. 36).

▸ Political Advocacy toward Health Equity Nurses engage in reflection individually and col - lectively as a professional group as they work with populations towards the elimination of dispari - ties and achieving equity via policy development and assurance . They ask questions such as: Where do we stand, and where does the nation stand?

It is important to ask these questions to clarify and answer them. Courtwright (2008) says, “If we take the social determinants of health seri - ously, we need to look beyond asking whether the conditions that create them are just or un - just and start with the more fundamental ques - tions of whether it is right that some people have worse health care than others” (p. 17). Over the decades, there has been a progressive movement in the work of Healthy People to address this is - sue, as noted in the evolution of its overall goals, where there has been a shift of emphasis con - cerning disparities. Initially, the focus was on the reduction of health disparities, then the focus shifted to the elimination of health disparities.

More recently, Healthy People 2020 introduced the concept of health equity, which is defined as “attainment of the highest level of health for all people. Achieving health equity requires valu - ing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and healthcare disparities” (National Partnership for Action, 2011, para. 1).

Social Justice and Responsibility Flaskerud and Winslow (2010) invite readers to reflect on and answer the following question:

“Who has the ultimate responsibility for the well-being of the most vulnerable among us?” (p. 298). Given the issues we face as a nation Political Advocacy toward Health Equity 77 together to address the determinants that fa - cilitate vulnerability and disparities. This new way emulates practice from a primary health - care perspective. Truglio-Londrigan, Single - ton, and Lewenson (2017) view primary health care as a philosophical belief about social jus - tice and health equity that nurses and the pro - fession must consider in their work. They base their beliefs on the 1978 saying “Health for All” that was coined by the World Health Or - ganization (WHO) and led to the idea of pri - mary health care as the means of achieving this goal. So strong was this belief that at the Inter - national Conference on Primary Health Care, the Declaration of Alma-Ata was developed and expressed a call to action by all governments and world communities to promote and pro - tect all people (WHO, 1978). This declaration contains 10 points. The fifth point speaks spe - cifically to the idea of primary health care. The declaration formally defined primary health care as follows: Essential health care based on prac - tical, scientifically sound and socially acceptable methods and technology made universally accessible to indi - viduals and families in the community through their full participation and at a cost that the community and country can afford to maintain at every stage of their development in the spirit of self-reliance and self-determination.

It forms an integral part both of the country’s health system, of which it is the central function and main focus, and of the overall social and economic development of the community. It is the first level of contact of individuals, the family and community with the national health system bringing health care as close as possible to where people live and work, and constitutes the first element of a continuing health care process. (WHO, 1978, para. 6) are not always “altruistic” or “value neutral” with regard to different populations who may be “cast out” and “treated prejudicially” (p. 434). This author further states, “. . . if it is the objective of public health providers to safeguard access to healthcare services for all members of society, it is crucial to be attentive to public policy and the powers behind policies creation” (p. 434).

As evidenced by the government in power to - day, questions about the notion of “health for all,” an attribute of primary health care that sup - ports the care of the most vulnerable in society, is now gravely challenged. Do we, as a nation, a profession, and a people, recognize and see a problem? Do we see and understand the issues experienced by vulnerable people as a priority, or do we ne - glect, ignore, or become bogged down in the dogma that reflects the diverse and wide vari - ety of ideas pertaining to social and moral val - ues (Mechanic & Tanner, 2007)? To talk about the policy necessary to address the needs of vulnerable people in this way implies an ap - proach that is paternalistic without regard to the strengths of the vulnerable population in question. Purdy (2004) conducted a concept analysis of the term vulnerable and identified several positive consequences. One had to do with the term open and exposed . Purdy indi - cated that being open and exposed, with regard to vulnerability, may lead to positive opportu - nities. Dorsen (2010) took this a step further in a concept analysis of vulnerability in homeless adolescents and noted positive consequences of vulnerability as the homeless adolescents demonstrated increased resilience, self- reliance, resourcefulness, and innovation. In addition, the providers demonstrated a decrease in neg - ative judgmental behavior and also illustrated a greater understanding of the struggles of this specific population. The possibility exists, therefore, to view vulnerability in a different way, where health - care providers and policymakers see those who are vulnerable as valuable partners working 78 Chapter 4 Population Health Care: Access, Cost, and Quality CASE STUDY A Public Health Nurse’s Story:

Responding to a Local Need This case study is based on the work of a public health nurse, Amanda, who served in the role of director of public health nursing in a county department of health services during the 1990s and early 2000s. While public health nursing focuses on populations, it also works with individuals, families, and communities. By virtue of their practice, public health nurses are connected with governments at local, county, state, and federal levels. This case illustrates how public health nursing practice is often based on legislation that must be enacted at the local level. “It is because federal, state, and local laws require enforcement, that public health nursing can be described as a combination of nursing practice and public health science, including the enforcement of all applicable, local health laws” (anonymous personal communication, August, 7, 2013). Amanda further explained that the U.S. Department of Health and Human Services (USDHHS) and the Centers for Disease Control and Prevention (CDC) guide public health practice, whereas the state commissioner of health and each state’s legislated Standards of Performance for Local Boards of Health guide practice at a local level. The delivery of care at a local level to a vulnerable population of adults who are diagnosed with tuberculosis ( TB) highlights the core functions of public health: assessment, policy development, and assurance.

Population at Risk The population at risk is any resident within the county who had been diagnosed with TB or was at risk for TB. Physicians at the County TB Chest Clinic and the public health nurses related to this specific County Department of Health Services (CDHS) were the main providers of TB care in the community.

The Problem For a long time, Amanda reported, Chest Clinic physicians and the involved public health nurses The notion of full participation in this defini - tion is further defined in the following statement: Requires and promotes maximum community and individual self-reliance and participation in the planning, organization, operation and control of primary health care, making fullest use of local, national and other available resources; and to this end develops through appropriate education the ability of communities to participate.

(WHO, 1978, point 6, section 5) Could this engagement for full participa - tion by vulnerable people be another way of working with our elected officials in the pol - icy arena? As individuals and populations who are living in vulnerable states partner with or - ganizations in the development of strategies to address factors, precipitators, or determi - nants of health that facilitate these vulner - abilities, which may lead to negative health outcomes, is it possible to apply the insights of those considered vulnerable in the identi - fication of priority policy agenda items and how these policies are implemented at local levels? The ability to fully operationalize part - nering with all other parties in a community, while perhaps the goal, is difficult to achieve but not impossible. Using an example from the recent past allows us to view the way a public health nurse operationalized the idea of engaging vulnerable people in political ad - vocacy for better healthcare outcomes by es - tablishing beginning connections necessary for partnership development with the popu - lation being served. The following case study is from an inter - view with a public health nurse and illustrates the intersection of nursing social responsibil - ity, laws to protect vulnerable people, and con - cern for the population in general, and how standards of care were executed with policies and procedures. Case Study 79 staff to meet the DOT standard, particularly in this county, where there was a significant shift in demographics. This issue spurred an internal assessment to find out what was happening. Conducting the assessment was difficult because the CDHS system was not fully supported by technology, and data mining was impossible. What ensued was a massive chart audit that helped everyone see the changing demographics and created the context for collective reflection. Based on this audit, policies and staffing needed to change, as did the competencies of the staff and the involvement of key individuals living in the communities that were reflected in the vulnerable population being served.

Solution Amanda, in concert with the CDHS health officer, applied for a grant that the CDC made available to state departments with demonstrated need.

The previous audit outcomes allowed her to be successful in demonstrating need; the grant was awarded, and monies to enhance the department’s abilities were received. This financial resource permitted the CDHS to hire additional staff, purchase necessary equipment, and provide the public health nurses with culturally accurate educational materials for the target population of TB cases and their contacts. Amanda reported that these grant monies allowed the CDHS Office of Public Health Nursing to add bilingual nursing or outreach staff to meet the language needs of the population, have a designated car for DOT home visits, provide annual updated and culturally sensitive TB Standards of Care education to all involved public health personnel, and enhance involvement of the communities and populations being served.

Outcome As a result of these population-based interventions, the treatment policies changed. DOT was provided daily by culturally sensitive staff, community understanding and involvement increased, TB treatment compliance increased, and the incidence of MDR-TB conversions decreased. These positive outcomes resulted in continued grant funding from the state, thus ensuring continuance of care.

The cycle of public health assessment, policy development, and assurance had come full circle. were able to deliver the required care and meet standards of practice. Over time, however, there was a change in the population served; this was not recognized by the public health nurses and other professionals, resulting in diminished treatment compliance, reduced numbers of optimal outcomes, and increased risk of multidrug-resistant tuberculosis (MDR-TB). Demographic trends showed the county was changing due to increased migration from Korea, China, South America, and Central America. This created a shift from a mostly white, English-speaking population to a more culturally diverse population, with English as a second language or no English at all. This was compounded by the fact that these diverse populations often had a different cultural understanding of TB and its treatment. In addition, if a particular person was undocumented, he or she saw the public health nurse as a government person and wanted to avoid contact. Although the population had changed, Amanda reported, the available public health nurses were still primarily white and English speaking. They sensed these shifts in demographics, but it had happened gradually, so its significance was not apparent. They were not culturally aware of what these shifts meant in terms of how TB care delivery needed to be changed. Strategies for the delivery of culturally competent and congruent care would be needed if positive health outcomes were going to be sustained. Instead, the nurses recognized only how increasingly difficult it was to meet client needs, obtain compliance, achieve standards of care, and reach positive outcomes. Simultaneously, additional standards of care had been developed by the State Department of Health—Standards of Care for Tuberculosis Disease and Latent TB Infection—that stressed the use of directly observed therapy (DOT ) for all pulmonary and laryngeal TB cases. DOT means that a public health nurse, or a delegate, would meet with each TB patient to observe the self-administration of prescribed medications. As this standard was incorporated, each TB program throughout the state did its best to meet the DOT standard; however, it became apparent that provider agencies with a significant number of TB cases needed additional CDC funding or additional 80 Chapter 4 Population Health Care: Access, Cost, and Quality as they engaged in the role of political advocacy for this vulnerable population.

a. Identify the time in history and describe what the presiding issue was and what the population was experiencing with regard to the issue. b. How did the nurses of that time exemplify the role of a political advocate for the population? c. How did the nurses of the time engage in political advocacy? 2. As a group, discuss the various vulnerable populations that you have encountered in your practice.

a. Identify the population. b. Gather information about the population and the risks that make them vulnerable and the specific disparities they experience. c. What are the specific issues that this population presently face? d. How would you describe their access to care, quality of care, and the economic burden of that care? e. How can you advocate politically for this particular population with regard to the issue? f. How can you engage and partner with the population in political ad - vocacy, working together to address their vulnerability and disparities?

Provide specific examples. g. How does partisan politics affect the care society provides to vulnerable populations? References Aday, L. A. (2003). At risk in America: The health and health care needs of vulnerable populations in the United States (2nd ed.). San Francisco, CA: Jossey-Bass. Agency for Healthcare Research and Quality. (2011). 2011 national healthcare quality and disparities report . Retrieved from https://archive.ahrq.gov/research/findings/nhqrdr /nhdr11/key.html Agency for Healthcare Research and Quality. (2014). 2014 national healthcare quality and disparities report. Retrieved from https://www.ahrq.gov/research/findings/nhqrdr /nhqdr14/index.html ▸ Conclusion There is a danger when making a list of vulnera - ble populations. Such a list gives the impression that the list is complete. The list presented earlier in this chapter is not complete and is provided as a demonstration of the breadth of this issue.

There is also a danger in accepting the status quo, and believing the government accepts the responsibility to support the vulnerable popula - tions among us. Yet, this is not always true, and even knowing the scientific evidence that sup - ports a more socially just practice, nurses and healthcare providers must become clearer on who these populations are and what needs to be done—socially, economically, and politically— to ensure and assure that the care is provided. Vulnerability can be assigned to populations, and it can occur in individuals. There is a rela - tionship among factors that lead to vulnerabil - ities. Using various examples from history and contemporary times, we see an evolving over - arching public health framework in which we can explore the ideas surrounding vulnerabil - ity, disparity, quality, cost, advocacy, and pol - icy. Nurses have responsibly acted upon the needs of vulnerable people over the past 100 years. From Wald’s leadership in both urban and rural settings to nurses’ responses today as they meet the needs of vulnerable people, this commitment continues. This chapter illustrates how nurses have served and must continue to serve the public in addressing vulnerabilities and disparities through political advocacy while ad - dressing cost and quality. In this way, it is hoped that the Declaration of Alma-Ata phrase “Health for All” can be realized.

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VanMeter (Eds.), History 82 Chapter 4 Population Health Care: Access, Cost, and Quality Urban Institute. (2010). Health policy center: Vulnerable populations. Retrieved from http://www.urban.org /health_policy/vulnerable_populations/ U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality. (2011). National healthcare disparities report 2011 . Rockville, MD: Author. U.S. Department of Health and Human Services, Office of Minority Health. National Partnership for Action to End Health Disparities. The National Plan for Action. (2011). Health equity and disparities. Retrieved from http://www.minorityhealth.hhs.gov/npa/templates /browse.aspx?lvl =1&lvlid =34 U.S. Department of Health and Human Services/Healthy People 2020. (2010a). Determinants of health. Retrieved from http://www.healthypeople.gov/2020/about /DOHAbout.aspx U.S. Department of Health and Human Services/Healthy People 2020. (2010b). Social factors. 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New York, NY: Springer Publishing Company. Stevens, G., Shi, L., & Faed, P. (2008). Vulnerable in more than one way. Health Affairs , 27(3), 894–902. Truglio, P. (2017). Case study—public policy and populations: Are we safeguarding the vulnerable? In M. Truglio-Londrigan & S. B. Lewenson (Eds.), Public health nursing: Practicing population-based care (3rd ed., p. 435). Burlington, MA: Jones & Bartlett Learning. Truglio-Londrigan, M., & Lewenson, S. B (2017). What is public health and public health nursing? In M. Truglio-Londrigan & S. B. Lewenson (Eds.), Public health nursing: Practicing population-based care (3rd ed., pp. 3–21). Burlington, MA: Jones & Bartlett Learning. Truglio-Londrigan, M., Singleton, J., & Lewenson, S. B. (2017). Conversation about primary health care. In M. Truglio-Londrigan & S. B. Lewenson (Eds.), Public health nursing: Practicing population-based care (3rd ed., pp. 423–441). Burlington, MA: Jones & Bartlett Learning. Ubri, P., & Artiga, S. (2016). Disparities in health and health care: Five key questions and answers. San Francisco, CA: The Henry J. Kaiser Family Foundation. Retrieved from http://kff.org/disparities-policy/issue-brief/disparities-in -health-and-health-care-five-key-questions-and-answers/ 83 References demands of an increasing caseload (O’Brien, 2015; S. Plichta, personal communication, November 17, 2015; Zou & Savchuk, 2015), further requiring that their skills in identifying elder abuse be strengthened. A focus group of experienced APS workers was conducted prior to the pilot study to better understand APS workers’ baseline knowledge.

Participants discussed that the NYC APS employed a professional registered nurse (RN) in the past who would, at times, attend client visits with workers.

The nurse’s official role was to “conduct thorough healthcare assessments of clients and support APS caseworkers and supervisors on complex cases” (NYC Human Resource Administration, n. d.). In addition to assessing clients for signs of abuse, duties included making referrals for medical and mental health care, participating in multidisciplinary team conferences, assisting clients with setting and meeting healthcare goals, and providing training to APS workers and supervisors on “healthcare issues” (HRA, n. d.). Focus group participants stated that they felt the nurse helped them with medically complicated cases, especially when clients were in denial of their health status.

One worker stated, “You just never know if the story that they are telling is true. It [sexual abuse] may have happened to them when they were younger and they are remembering it now because of their dementia.” The nurse also helped workers to better differentiate signs of abuse from medication side effects. For example, one worker stated that she learned that a client’s bruises were due to her taking blood thinners, not because she was being abused ( Tran, 2016). The often confusing nature of aging and the impact of abuse on the client’s mind and body required the help of a healthcare expert to assist in investigative efforts. There was a consensus that the RN was an important member of the APS team. However, at the time of this project, the RN position remains vacant. A multidisciplinary group project was conducted to help improve the training for NYC APS workers on the identification of the physical signs of elder abuse through collaboration between Hunter-Bellevue School of Nursing (HBSON)/City University of New York (CUNY ), Brookdale Center for Healthy Aging at Hunter College, and the Human Resources Administration (HRA) of NYC. The multidisciplinary team, comprising nurses, physicians, social workers, CASE STUDY A Multidisciplinary Effort to Improve the Detection of Elder Abuse Among Adult Protective Service Workers in New York City Anh Phuong Tran Purpose To develop a training for Adult Protective Service (APS) workers of New York City (NYC) that focuses on the physical signs or markers of elder abuse, so that APS workers will be better equipped to identify these signs in alleged victims and make referrals for these victims to needed services.

Body Elder abuse victims have a lower quality of life and higher healthcare resource utilization, such as emergency department visits and nursing home admissions, when compared to elders who are not experiencing abuse (Dong & Simon, 2013; Dong, 2015; LoFaso & Rosen, 2014). For the protection of older adults, all 50 states and Washington, DC are mandated to have an APS program under Title XX of the Social Security Act (Connell-Carrick & Scannapieco, 2008; Jackson, 2017; Nerenberg, 2006). The national prevalence of elder abuse is estimated to be 11.4%, but is likely to be higher due to low reporting rates (Acierno et al., 2010) and will likely continue to increase as the aging population rises. APS workers investigate allegations of the abuse of vulnerable adults (i.e., physically or mentally disabled and/or elderly) and make referrals for services when needed (Jackson, 2017; Nerenberg, 2006). The investigative skills of APS workers and their knowledge of elder abuse are pivotal to identifying a vulnerable adult in need of assistance; however, their skills and knowledge differ from state to state due to varying requirements for minimal education and differences among APS training programs (Connell-Carrick & Scannapieco, 2008; Dyer et al., 2006; Jackson, 2017). Additionally, as the older adult population grows, APS workers also face the 84 Chapter 4 Population Health Care: Access, Cost, and Quality CASE STUDIES nursing in the aging process, physical assessment, and education of lay persons contributed to the development of a focused training for APS workers. The project demonstrated that a focused educational program developed by a multidisciplinary team of elder abuse experts, including lay APS workers, can help to improve the knowledge, confidence, and skills of those who investigate elder abuse. Ultimately, the goal of this educational program is to positively impact the lives of elder abuse victims in the community.

Summary The HBSON, Brookdale Center for Healthy Aging at Hunter College, HRA of NYC, and APS of NYC collaborated on a multidisciplinary project to develop a training to help APS workers improve their ability to identify physical signs of elder abuse, escalate potentially life-threatening situations, and communicate their findings. After conducting a focus group with APS workers, the curriculum, associated training, and evaluation materials were reviewed by experienced APS workers, physicians, nurses, social workers, and training experts. The half-day pilot training included 16 APS workers with field investigation experience. The pilot showed that focused training increased workers’ knowledge of the signs of elder abuse and escalation of potentially dangerous situations, improved self-efficacy in identifying elder abuse and the communication of findings, and provided recommendations to improve the training.

Case Study Questions 1. Should the federal government have a more active role in providing oversight for APS and/or provide financial support in an effort to improve the identification of elder abuse through:

a. Standardize training? b. Increasing the number of APS workers in the workforce? c. Expanding the role of the professional RN in APS? 2. The caseload of APS workers varies from state to state. Should there be a maximum number of cases per worker like the RN to patient ratio in hospitals? 3. Should the minimum education and field of study for APS workers be standardized training and education experts, and APS workers, was led by a Doctor of Nursing Practice (DNP) student from the HBSON. The training was developed using medical and nursing literature on the physical signs of abuse, and adapted from existing elder abuse training modules. The Diffusion of Innovations Model was used to guide the project in order to include the population of focus (APS workers) in the training development, piloting, and revision of the curriculum in hopes that APS workers would ultimately adopt the “innovation” (the knowledge and skills gained through the training). Once the curriculum was finalized by the interdisciplinary team, it was piloted with a group of 16 experienced APS workers. The pilot training was facilitated by the project lead, a DNP student with a concentration as an adult/geronotological nurse practitioner, and the Director of Training and Learning at Brookdale. APS workers participated in a half-day training, which consisted of group discussions; case studies activities; and a lecture on the physical signs of abuse, potentially life-threatening situations that required escalation (i.e., notifying a supervisor or calling 911), and communication. Participants filled out a survey to give feedback on the training to improve future trainings for their colleagues. Participants in the pilot training demonstrated an increase in both their knowledge and confidence in being able to identify the physical signs of elder abuse and communication of these findings.

Additionally, most of the participants believed that the training will help to increase their abilities to detect the signs of elder abuse when investigating allegations, and boost their communication skills. The participants also provided feedback on methods to improve the training. APS workers are dedicated to the protection of vulnerable adults. However, due to a national variation in training, specific information regarding the physical indicators of elder abuse, in some APS programs, may not be provided. Further, the demands from having an increased caseload may lead to APS workers overlooking some signs of abuse, leaving some older adult victims unidentified. Although NYC APS did not have a professional RN on staff, the collaboration between the HRA of NYC, HBSON, and Brookdale has allowed nursing to impact APS through training development. The knowledge and skills of Case Study 85 CASE STUDIES Service workers. Journal of Elder Abuse & Neglect, (17) 4, 1–10. doi: 10.1300/j08v17n01_01 Jackson, S. L. (2017, January). Adult protective services and victim services: A review of the literature to increase understanding between these two fields. Aggression and Violent Behavior, 1–14. doi.org/10.1016/j.avb.2017.01.010 Lofaso, V. M., & Rosen, T. (2014). Medical and laboratory indicators of elder abuse and neglect. Clinics in Geriatric Medicine, 30 (4), 713–728. doi: 10.1016/j.cger.2014.08.003 Nerenberg, L. (2006). Communities respond to elder abuse. Journal of Gerontological Social Work, 46 (3–4), 5–34. doi:10.1300/J083v46n03 02 NYC Human Resource Administration (n.d.). Staff nurse job description [ Word document] . Retrieved from https:// outlook.office.com/owa/?realm =myhunter.cuny .edu &exsvurl =1&ll-cc =1033&modurl =0&path = /attachmentlightbox O’Brien, C. (2015). Working with domestic violence: A clinician’s guide to ethical and competent practice. InPsych, 37 (5). Retrieved from https://www.psychology .org.au/inpsych/2015/october/obrien. Personal communication: Stacey Beth Plichta. (November 17, 2015). Tran, A. P. (2016). Enhancing adult protective service workers’ abilities to detect the physical signs of elder abuse: focus group (Unpublished report). New York, NY: Hunter-Bellevue School of Nursing. Zou, J. J., & Savchuk, K. (2015, July 22). City struggles to protect New Yorkers in need. The New York World. Retrieved from http://www.thenewyorkworld.com/2015/07/22 /city-struggles-protect-new-yorkers-need-2/ like the effort for nursing to have RNs with a bachelor’s degree minimum? 4. This case study demonstrates the ability of the RN to assist in the care and advocacy of a vulnerable population. What other opportunities are there for RNs in improving elder abuse detection in the community? References Acierno, R., Hernandez, M. A., Amstadter, A. B., Resick, H. S., Steve, K., Muzzy, W., & Kilpatrick, D. G. (2010). Prevalence and correlates of emotional, physical, sexual, and financial abuse and potential neglect in the United States: The national elder mistreatment study. American Journal of Public Health, 10 (2), 292–297. doi: 10.2105 /AJPH.2009.163089 Connell-Carrick, K., & Scannapieco, M. (2008). Adult Protective Services: State of the workforce and worker development. Gerontology & Geriatrics Education, (29) 2, 189–206. doi:10.1080/02701960802223290 Dong, X. (2015). Screening for elder abuse in healthcare settings: Why should we care, and is it a missed quality indicator. Journal of the American Geriatrics Society, 63 (8), 1686–1692. doi: 10.1111/jgs.13538 Dong, X., & Simon, M. A. (2013). Elder abuse as a risk factor for hospitalization in older persons. JAMA Internal Medicine, 173 (10), 91–97. doi: 10.1001/jamainternmed.2013.238 Dyer, C. B., Toranjo, C., Cunningham, M., Festa, N. A., Pavlik, V. N., Hyman, D. J. Paythress, E. L., & Searle, S. (2006). The key elements of elder neglect: A survey of Adult Protective 86 Chapter 4 Population Health Care: Access, Cost, and Quality CASE STUDIES © Anthony Krikorian/Shutterstock Global Health: A Vision for Action Stephanie L. Ferguson OVERVIEW Global health and its challenges remain a top priority for world leaders and health professionals. The Millennium Development Goals (MDGs) developed by the United Nations (UN) showed us that the world can set a vision for global health and action, yielding “unprecedented efforts and profound achievements” (UN, 2015, p.4). Ban Ki-moon, former Secretary General of the United Nations, wrote it best in the Millennium Development Goals Report 2015 when he proclaimed that, “ The MDGs helped to lift more than one billion people out of extreme poverty, to make inroads against hunger, to enable more girls to attend school than ever before and to protect our planet. They generated new and innovative partnerships, galvanized public opinion and showed the immense value of setting ambitious goals. By putting people and their immediate needs at the forefront, the MDGs reshaped decision- making in developed and developing countries alike” (UN, 2015, p. 3.). However, despite progress achieved with the MDGs, as an example, the goals of reducing child mortality and improving maternal health were not realized. Today, we anticipate with new hope the global health goals, indicators, strategies, and actions set forth in the vision of the Sustainable Development Goals (SDGs) (UN, 2016). The effects of globalization have been both positive and negative. From a positive perspective, globalization has increased travel, trade, productivity, and economic growth in many nations.

Globalization has allowed populations to rapidly exchange information and share solutions to common problems worldwide. However, the negative effects of globalization have led to an increase in global health security threats such as outbreaks of pandemic influenza, Ebola, Zika, and Middle East Respiratory Syndrome coronavirus (MERS-CoV ). Nations have struggled to meet the challenges of these outbreaks due to of a lack of public health infrastructure and preparedness capabilities. The global health challenges faced today are daunting and range from communicable diseases, such as human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), tuberculosis ( TB), and malaria, to noncommunicable diseases (NCDs), such as cardiovascular disease (continues) 87 CHAPTER 5 (CVD) and cancer. There are numerous factors that influence health, such as the environment, mental health, substance abuse, and antimicrobial resistance, to name a few. In the 2015 Global Burden of Disease Study, Forouzanfar and team (2016) found that there are 315 conditions that contributed to the most global disability-adjusted life years (DALYs). DALYs represent the total number of years lost to illness, disability, or premature death within a given population (National Institutes of Mental Health [NIMH], 2017). Other challenges for the world include increases in population growth, which has a direct impact on climate, food supply, health systems and health workforce, and more. For instance, by 2035, the World Health Organization ( WHO) estimates that there will be a shortage of 12.9 million health workers ( WHO, 2013). Without enough health workers fit to serve in the right place at the right time to care for the world’s population, the global quest for Health for All, Universal Health Coverage and Access, and the realization of the SDGs will not be achieved by 2030. To learn more about global health challenges and issues facing the world, refer to the latest health topics, data, publications, country statistics, programs, and global governance structures provided by the World Health Organization. The WHO is the premier United Nations organization responsible for all policies and governance activities related to public health worldwide. The WHO website (www.

who.int) provides a wealth of information on health. To learn more about the mission and vision of the WHO, visit their website at www.who.int/about/en/. The United States has been a champion and global leader in health at the WHO headquarters in Geneva, Switzerland and at all the WHO’s regional offices. To follow the work of the U.S. in global health, visit the Office of Global Health Affairs (OGA) at the U.S. Department of Health and Human Services (USDHHS) website (www.hhs.gov/about/agencies/ oga/index.html). The Office of Global Affairs is the diplomatic voice of the USDHHS. OGA fosters critical global relationships, coordinates international engagement across USDHHS and the U.S. government, and provides leadership and expertise in global health diplomacy and policy to contribute to a safer, healthier world. This chapter overview is a snapshot of some of the global health challenges and issues facing\ the world today and tomorrow. This chapter is a call to action for all nations to commit to investing in global health, and for nurses and health professionals to advocate for the investment in global health.

Investing in global health over the next 20 years can save the lives of millions of children and adults, and result in positive returns on investments for people living and working in lower-middle income countries (LMICs) (National Academies of Sciences, Engineering, and Medicine [NAS], 2017). The author of this chapter was selected to participate in the consensus study to determine global health and the future role of the United States (see the press release: www8.nationalacademies.org/onpinews /newsitem.aspx?RecordID =24737). To learn more about Global Health and the Future Role of the United States , read the latest report from the National Academies of Sciences, Engineering, and Medicine (2017).

OVERVIEW (continued) OBJECTIVES ■ Define the politics of global health in the context of the latest National Academies of Science’s report, Global Health and the Future Role of the United States (2017). ■ Provide examples of current global health initiatives important for nurses and other health professionals. ■ Identify roles nurses and other health professionals can play in global health policy and advocacy, including ways to get involved and get a seat at the table. 88 Chapter 5 Global Health: A Vision for Action ▸ The Politics of Global Health in the United States of America Global health, as a field of study, research, and policy, has grown tremendously over the last few decades. The United States has achieved a proven track record and legacy of leadership in providing foreign assistance, excellence in determining global health policies, and fund - ing global health initiatives to care for popula - tions worldwide. As a nation, the U.S. has been a champion in the fight against HIV/AIDS, ma - laria, and TB. For instance, global U.S. invest - ments include the creation of the President’s Emergency Plan for AIDS Relief (PEPFAR) in 2003 and the President’s Malaria Initiative (PMI) in 2005. The U.S. has also been a key partner in leading and funding the Global Fund to Fight AIDS, Tuberculosis and Malaria and the Global Vaccine Alliance (GAVI). Likewise, the National Academies of Sciences, Engineering, and Medicine have been front and center studying the United States’s work in global health and, in general, the science in the field of global health, as well as global health risk assess - ment and security worldwide. The National Acad - emies of Sciences, Engineering, and Medicine, also known as The National Academies (NAS), are the private, nonprofit institutions that provide independent, objective analysis and advice to the U.S. to solve complex problems and inform pub - lic policy decisions related to science, technology, and medicine. The Health and Medicine Divi - sion of the NAS helps those in government and the private sector make informed health-related decisions by providing reliable and objective evi - dence. To learn more about the National Acad - emies of Sciences, Engineering, and Medicine, visit their website at www.nationalacademies.org/. In 1997, the Institute of Medicine’s (IOM) Board on International Health was commis - sioned to produce the first report to address the United States’ interest in and commitment to im - proving human health worldwide. The report, entitled America’s Vital Interest in Global Health: Protecting Our People, Enhancing Our Economy, and Advancing Our International Interests, de - fined global health issues as “health problems, issues, and concerns that transcend national boundaries, and are best addressed by coopera - tive actions” (IOM, 1997). Similarly, in 2009, an independent committee was constituted by the IOM Board on Global Health to prepare a report for then-President Barack Obama and his new administration, entitled The U.S. Commitment to Global Health: Recommendations for the New Administration (IOM, 2009). Like the IOM 1997 Global Health report, it was concluded in the 2009 IOM Global Health report that the dir - ect interest of the citizens of the United States are best served when the U.S. acts decisively to promote health around the world. That 2009 report on global health also included a call for better structuring of market incentives to de - velop medical products. Much has been achieved since the two IOM reports (1997, 2009). For instance, the U.S. Office of the Assistant Secretary for Preparedness and Response established the Biomedical Advanced Research and Development Authority (BARDA) through the 2006 Pandemic and All-Hazards Act (Public Law. No. 109-417, 42 US 201). An - other example is the U.S. Food and Drug Ad - ministration (FDA)’s priority review voucher program, established in 2007, which provides our government with the ability to expedite the FDA’s review of new drugs, particularly those needed in an emergency crisis like the 2014 outbreaks of Ebola in parts of West Africa. A great case in point was the expedited review of products to treat Ebola, which became eligible in 2014. Despite these initiatives and achieve - ments, there remains a need for drug and vac - cine development worldwide to tackle some of the persistent and emerging infectious disease and other global threats today and tomorrow. Since the 2009 IOM global health report, much progress has been made in research de - velopment in low and middle-income countries (LMICs) through country-led workforce de - velopment and the creation of national health The Politics of Global Health in the United States of America 89 of authority and budget given to the GHI and its leadership; as a result, the only thing left to show progress was an internet presence show - ing some coordinating priority area of global health programs. Despite the failure of GHI, there was much progress made through PEP - FAR, the President’s Malaria Initiative (PMI), and the U.S. Global Health Security Agenda. With the hope of continued change post– President Obama and “making America Great Again,” global health continued to be in the fore - front of the presidential debates of 2016 behind the scenes. Questions were being asked about what the U.S. should do with PEPFAR. Should PEPFAR’s mission and global health mandate re - main the same or should it be reformed? Better yet, should the U.S. declare success and move forward with another government global health initiative? Other key stakeholders and citizens questioned what the U.S. should be doing to pro - tect our nation and the world from persistent and/or emerging global epidemics and pandem - ics, outbreaks, and global health challenges like noncommunicable diseases (NCDs). Moreover, what should the U.S do to address the unfinished business in the Millennium Development Goals (MDGs) and the new business of the Sustain - able Development Goals (SDGs), particularly in the context of women and children? Essen - tially, citizens, government officials, academics, private and public partners, foundations, busi - nesses, other nations, and global health policy organizations such as the United Nations (UN), the World Bank, the World Health Organiza - tion (WHO), the Global Fund, and the Global Vaccine Alliance (GAVI) wanted to know what the next presidential administration and the U.S. government should be investing in related to global health. Thus, because of the upcoming presidential elections in the United States in 2016, the timing was right to ask the National Academies of Sci - ences, Engineering, and Medicine to conduct a new consensus study on Global Health and the Future Role of the United States . The 2017 NAS report on global health, the third of its kind (IOM, 1997, 2009; NAS, 2017a ), was launched in May 2017. The NAS global health consensus plans. In addition, the formation of the Nurs - ing Education Partnership Initiative (NEPI) and the Medical Education Partnership Initiative (MEPI) was developed through the President’s Emergency Plan for AIDS Relief (PEPFAR) at the Department of State to address the shortage of health workers in high-burden HIV/AIDS countries. NEPI and MEPI program efforts improved workforce capacity in these LMICs. The other most notable recommendation that came out of the 2009 IOM Global Health re - port was the recommendation to create a White House Interagency Committee on Global Health.

The proposed new agency would be chaired by a U.S. government senior official designated by the U.S. President. The job of the chair of the new global health agency was to lead, plan, prioritize, and coordinate the budget for major U.S. government global health initiatives. Presi - dent Obama agreed with this IOM 2009 Global Health report recommendation and he created the U.S. Global Health Initiative (GHI). During this time frame, under the leader - ship of President Obama and through the GHI, the author of this chapter had the great oppor - tunity to work with the GHI and the State De - partment, the U.S. Human Resources for Health Administration (HRSA), the National Institute of Nursing Research (NINR) at the National Institutes of Health (NIH), and the Centers for Disease Control and Prevention (CDC) to pro - vide health diplomacy services to strengthen the research capacity of nurses and other health pro - fessionals in countries like Bangladesh. In addition to the author of this chapter, Dr. Afaf Meleis, former Dean of the University of Pennsylvania, elected member of National Academy of Medicine (NAM, formerly IOM), member of the IOM Global Health Report Com - mittee in 2009; and Dr. Mary Kerr, former Deputy Director of the National Institute of Nursing Re - search at the National Institutes of Health and Dean of the Frances Payne Bolton School of Nurs - ing at Case Western Reserve, were a part of the delegation that worked to strengthen the nurs - ing capacity in research on behalf of the GHI. Unfortunately, as time moved forward, the GHI was not successful. There was a lack 90 Chapter 5 Global Health: A Vision for Action vulnerable populations, most such aid, especially when directed toward health, is an investment in the health of the recipient country, as well as the United States and the world at large” (NAS, 2017a , p. S-2). The CGH agreed that asking the United States for more money alone to invest in global health challenges was not the answer. Moreover, realizing that there were many global health challenges on which to focus, such as mental health and substance abuse, environ - mental health (including climate change, food safety, air pollution, and water and sanitation issues), refugee health, and health workforce, to name a few, the CGH focused on priorities with the potential for catastrophic loss of life and impact on society, such as pandemics, per - sistent communicable diseases (HIV/AIDS, TB, and malaria), and noncommunicable diseases (NCDs), specifically cardiovascular health and select cancers. As well, the CGH focused on areas where significant U.S. funds had been invested and determined what needed to be achieved with the gains and how these investments should be consolidated and sustained in the current presi - dential administration. The CGH further agreed to focus the report on promoting women and children’s health, building capacity, and global health innovation and implementation. The Committee identified two over arching themes:

1. Securing against global threats; and, 2. Enhancing productivity and eco - nomic growth. The Committee proposed 14 recommen - dations in the context of these two themes. As well, four priority areas for action were identified to ensure the greatest positive effect on health.

The CGH felt that these two themes with the 14 recommendations and four priority areas set the strategy forward to position and maintain the United States as a global health leader worldwide. The four priority areas recommended include:

1. Achieve global health security. The Committee urged the adminis - tration to create a coordinating body within the U.S. government with the report was commissioned to advise the new U.S.

president and administration, whether it be Hil - lary Clinton or Donald Trump. In August 2016, the author of this chap - ter was selected and appointed by the National Academies of Sciences, Engineering, and Med - icine (NAS) to serve as a member of the Com - mittee on Global Health and the Future of the United States (CGH) ( NAS, 2017b ). This author is an elected member of the National Academy of Medicine (NAM), formerly known as the In - stitute of Medicine (IOM). The author was fit for purpose because of her expertise, which ranges from global health security, interprofessional workforce, and leadership development to health systems strengthening, universal health coverage and access implementation and evaluation strat - egies, HIV/AIDS, and women and children’s health.

This author has worked in more than 100 nations over 20 years on behalf of the U.S. government, WHO, and the International Council of Nurses. The National Academies’ CGH was charged to conduct a consensus study to iden - tify global health priorities in light of emerg - ing global health threats and challenges and provide recommendations to the U.S. govern - ment and other stakeholders for increasing re - sponsiveness, coordination, and efficiency in addressing these threats and challenges by es - tablishing priorities and mobilizing resources.

The NAS received financial and expert sup - port from a variety of federal agencies, foun - dations, and private partners such as the U.S.

Agency for International Development (US - AID), U.S. Department of Health and Human Services (USDHHS), Centers for Disease Con - trol and Prevention (CDC), U.S. Food and Drug Administration (FDA), National Institutes of Health (NIH), President’s Emergency Plan for AIDS Relief (PEPFAR), Rockefeller Founda - tion, Merck Foundation, Becton, Dickinson, and Company (BD), and Medtronic. Like domestic U.S. healthcare policy and re - form, funding and reforming global health care and initiatives are highly political. In general, “foreign assistance is often considered a type of charity, or support for the less fortunate. Al - though this can be true for the poorest and most The Politics of Global Health in the United States of America 91 4. Promote cardiovascular health and prevent cancer.

NCDs, cardiovascular diseases (CVD), and cancer are rising in countries around the world. The committee urged improved mobilization and coordination of private partners at the country level and across the U.S.

interagency community to implement strategies to ensure that CVD risk factors are targeted for early detection and treatment, and that strategies are implemented to target hypertension, cervical cancer, and immunization against vaccine-preventable cancers . See Recommendation 9 (Promote car - diovascular health and prevent cancer), and read NAS, 2017a, Chapters 6 and 8, for more information. Finally, the report followed three cross-cutting areas for action to maximize the returns on U.S.

investments to achieve better health outcomes and use funding more effectively. These three cross-cutting areas for action included: 1. Catalyze innovation through both the accelerated development of medical products and development of inte - grated digital health infrastructure. 2. Employ flexible financing mechan - isms to leverage new partners and funders in global health. 3. Maintain U.S. status and influence as a world leader in evidence-based science, economics, measurement, and accountability. To learn more about the cross-cutting themes, review Recommendations 10 through 14 and NAS, 2017a, Chapters 7, 8, and 9. An overview of the Committee’s recom - mendations is provided in TABLE 5-1 with ac - tions for nurses and other health professionals to consider they advocate for and participate in the development of global health policies.

To read the full text of the NAS 2017 Global Health report recommendations, please see the Recommendations document available at www.nationalacademies.org/hmd/reports/2017/ authority and budget to develop a proactive, cost-effective, and com - prehensive approach to preparedness for and response to international public health emergencies. To learn more about the global health security priority, read Chapter 3 in the NAS Global Health report (2017a) . 2. Maintain a sustained response to the continuous treats of communicable diseases.

The Committee urged the adminis - tration to maintain a sustained focus on HIV/AIDS and malaria, as well as a re-evaluate the commitment to fight TB. The progress achieved to combat these communicable diseases needs to be sustained to prevent reversal of the gains achieved in the past decades and avoid the further spread of resistant strains in all three diseases. To learn more about this pri - ority area regarding maintaining and sustaining response to the continuous treats of communicable diseases, see Recommendation 4 (Envision the next generation of the President’s Emergency Plan for AIDS Relief ) and read more about this in NAS, 2017a, Chapter 4. 3. Save and improve the lives of women and children.

The U.S. commitment to the current survival agenda should be continued but also expanded to incorporate early childhood development as a key component. The Committee noted that adding a multisectoral focus on childhood development to the cur - rent survival-focused programs can contribute to resilient societies and growing economies. To learn more about Recommendations 7 and 8, which address the improvement of survival in women and children and ensuring health and productive lives for women and children, you can read more about this priority and these recommendations in NAS, 2017a, Chapter 5. 92 Chapter 5 Global Health: A Vision for Action TABLE 5-1 NAS Global Health Report 2017 Recommendations and Actions for Nurses and Other Health Professionals Recommendations Actions Improve interna - tional emergency response coordination. Write letters and meet with your local U.S. Congress members and write letters to the current presidential administration to support the creation of an International Response Framework to guide U.S. response in an international health emergency. In your letter, advocate for three separate funding streams dedicated to investments in preparedness, emergency response, and critical medical product development.

Examples of opportunities to serve in international emergencies:

International Federation of the Red Cross:

media.ifrc.org/ifrc/what-we-do/volunteers/ American Red Cross:

www.redcross.org/volunteer/volunteer-opportunities /volunteer-internationally Doctors Without Borders:

www.doctorswithoutborders.org/ Peace Corps:

www.peacecorps.gov/resources/media/press/2146/ Combat antimicro - bial resistance. Consider a job in the U.S. Department of Health and Human Services (USDHHS), the U.S. Department of Defense (DoD), the U.S. Department of Agriculture (USDA), and the U.S. Agency for International Development (USAID). These agencies are responsible for investing in national capabilities to accelerate the development of international capabilities to detect, monitor, report, and combat antibiotic resistance.

For career opportunities in the agencies above to help fight antimicrobial resistance, check out the official website for jobs in the U.S. government:

www.usajobs.gov/ To learn more about antimicrobial resistance, review WHO resources at:

www.who.int/antimicrobial-resistance/en/ Build public health capacity in low and middle-income countries. Advocate for the CDC, NIH, DoD, and USAID to expand training and information exchange efforts to increase the capacity of low and middle- income countries to respond to both public health emergencies and acute mass casualty disasters.

Examples of opportunities to serve are like those mentioned in Recommendation 1.

To learn more about strategies to help build the public health capacity of low and middle-income countries, see the following WHO consultation paper on health workforce and service for the Global Framework for Public Health:

www.who.int/workforcealliance/media/news/2014/RefA_PublicHealthpaper.pdf Review the WHO Framework for a Public Health Emergency Operations Centre at:

www.who.int/ihr/publications/9789241565134_eng/en/ (continues) The Politics of Global Health in the United States of America 93 Recommendations Actions Envision the next generation of PEPFAR. Review the next generation of PEPFAR Indicators at:

www.nationalacademies.org/hmd/~/media /CCCCE5C1068F44A19DFAB5CF2CD914F6.ashx What role can you play to advocate for the continued funding of the Global Fund to Fight AIDS, Tuberculosis and Malaria? Check out the Global Fund and notice the job and volunteer opportunities worldwide at:

www.theglobalfund.org/en/ Confront the threat of tuberculosis. Consider the recommendations above. In the U.S. we need to advocate for a plan of action to improve the current governance structure and priority activities and investments in new diagnostics, drugs, vaccines, and delivery systems. The CDC, NIH/National Institute for Allergy and Infectious Disease (NIAID), and USAID should conduct a thorough global threat assessment of the rising TB levels and multidrug-resistant TB levels.

Learn more about TB from the WHO at:

www.who.int/tb/en/ Sustain progress toward malaria elimination. Consider advocating to keep the funding for the President’s Malaria Initiative (PMI). To learn more about this important effort and how to participate in eliminating malaria, read:

www.pmi.gov/ Improve survival in women and children. The U.S. Congress should increase funding for USAID to augment the agen - cy’s investments in ending preventable maternal and child mortality, defined as global maternal mortality rates of fewer than 70 deaths per 100,000 live births by 2020 and fewer children deaths per 1,000 live births by 2030. En - courage your Congress members to invest in the most effective interventions and support monitoring and evaluation in:

■ Immunizations ■ Integrated management of child illness ■ Nutrition (pregnant women, newborns, infants, and children) ■ Prenatal care and safe deliveries ■ Access to contraceptives and family planning Think about joining and financially supporting Women Deliver at: www.womendeliver.org/. Women Deliver is the lead global organization advocating for the health, rights, and well-being of girls and women. Women Deliver catalyzes action by bringing together diverse voices and interests to drive progress for gender equality, with a focus on maternal, sexual, and reproductive health and rights. TABLE 5-1 NAS Global Health Report 2017 Recommendations and Actions for Nurses and Other Health Professionals (continued) 94 Chapter 5 Global Health: A Vision for Action Recommendations Actions Ensure healthy and productive lives for women and children. USAID, PEPFAR and their implementing partners, and other funders should support the integration of principles of country ownership, domestic financ - ing, and community engagement to:

■ Provide adequate nutrition for optimal infant and child cognitive development. ■ Reduce childhood exposure to domestic and other violence. ■ Detect and manage postpartum depression and other maternal mental health issues. ■ Support and promote early education and cognitive stimulation in young children. Promote cardiovas - cular health and prevent cancer. To learn more about these recommendations read The Lancet Series on Maternal and Child Health:

Black, M. M., Walker, S. P., Fernald, L. C., Andersen, C. T., DiGirolamo, A. M., & Lu, C . . . Grantham-McGregor, S. (2017). Early childhood development coming of age: Science through the life course. Lancet 389 (10064):77–90. Also, check out the Every Woman Every Child Strategy (2015) at: globalstrategy.everywomaneverychild.org/.

Advocate for USAID, the State Department, and CDC to provide seed funding through their country offices to mobilize and involve the private sector in addressing cardiovascular disease and cancer at the country level. Strategies should include:

■ Target and manage risk factors (e.g., smoking, alcohol use, and obesity) for major NCDs and adopt fiscal policies to regulate tobacco control and healthy diets. ■ Detect and treat hypertension early. ■ Detect and treat early cervical cancer. ■ Immunize for vaccine-preventable cancers (e.g., human papilloma virus [HPV ] and hepatitis B vaccines). To learn more about how to advocate and fund NCD prevention strat - egies, join the NCD Alliance: www.ncdalliance.org/ Accelerate the de - velopment of medi - cal products. Advocate for U.S. government agencies to invest in reducing the costs and risks of developing, licensing, and introducing vaccines, therapeutics, diagnostics, and devices needed to address global health priorities. The ap - proaches need to enable innovations in trial design, streamline regulations, ensure production capacity, create market incentives, and build the capacity for international capacity for research and development. The CDC, NIH, and DoD should increase the number of people and institutions in partner coun - tries capable of conducting clinical trials for global health priorities and build the skills of principal investigators.

To learn more about the development of medical products, read:

www.ncbi.nlm.nih.gov/books/NBK234438/ (continues) The Politics of Global Health in the United States of America 95 Recommendations Actions Improve digital health infrastructure. USAID and the State Department should incentivize and support countries in building interoperable digital health platforms. USAID should provide technical assistance to countries in the development and implementation of interoperable digital health platforms. U.S. agencies should expand upon the “build-once” principle of the Digital Global Access Policy Act and align U.S.

funding in digital health by multiple agencies to reduce fragmentation and duplication.

For more information, read: www.who.int/bulletin/volumes/90 /5/11-099820/en/ Review NAM’s recent workshop documents on the use of technology to advance global health:

www.nationalacademies.org/hmd/Activities/Global/PublicPrivatePartner - shipsForum/2017-MAY-11.aspx Transition invest - ments toward global public goods. USAID, the State Department, and USDHHS should, together, systematically assess their approach to global health funding to ensure long-term invest - ments in high-impact, country level programs.

As advocates, keep your eye on what the U.S. is investing in globally and why and what is the impact of the goods provided for the global public? Optimize resources through smart financing. USAID and PEPFAR should structure their financing to promote greater coun - try ownership and domestic financing. Ministries in countries should be en - gaged to design and finance the plan, model refinement, and expansion of the return on investment analysis for financial execution. Simply put, USAID and the State Department should motivate the World Bank, GAVI, the Inter - national Monetary Fund, and the Global Fund to Fight AIDS, Tuberculosis and Malaria to promote transitioning to domestic financing, assist countries in creating fiscal space for health, leverage fiscal policies to improve health, and attract alternative financing sources.

Actions to take: When writing your advocacy letters, never forget to discuss your arguments in a policy framework to include cost, access, and quality. As global health threats, challenges, and issues continue, money will matter and how nations, including the U.S., pay for the money matters. No national gov - ernment will be able to pay for this alone. Private and public partnerships will need to be forged and new financing mechanisms that are smart will need to be created. TABLE 5-1 NAS Global Health Report 2017 Recommendations and Actions for Nurses and Other Health Professionals (continued) 96 Chapter 5 Global Health: A Vision for Action Recommendations Actions Commit to contin - ued global health leadership. The United States should commit to maintaining its leadership in global health and actively participate in global health governance, coordina - tion, and collaboration. The U.S. needs to be at the table to influence and improve the performance of key United Nations agencies such as the World Health Organization ( WHO). WHO needs greater resources to address the health challenges of the 21st century, and many of its prior - ities align with those of the U.S. government. However, U.S government financial contributions to WHO should come with a requirement that the organization adopt and implement the much-needed management and operational reforms. The U.S. also needs to remain partners in financing GAVI, the Vaccine Alliance, and the Global Fund to Fight AIDS, Tuberculo - sis and Malaria, as well as new entities such as the Global Health Security Agenda and the Global Financing Facility. The U.S. needs a more strategic approach implemented to achieve global health goals. The State Depart - ment should create a global health career track and seek congressional action to enable the establishment of a cadre of global health experts within the U.S. Department of Health and Human Services through an amendment of the Foreign Service Act. This would create the environ - ment necessary to expand the health attaché program, particularly in lower and middle-income countries (LMICs).

As nurses and health professionals, you should advocate for nurses and health workers to be at the tables in all WHO and other UN agency global health policy and evaluation works. By 2030, the health workforce shortages will be enormous and there will not be enough health workforce to meet the global health needs of the world’s population. Without adequate health workers, there will be no progress achieving global health outcomes. Know what is happening in your nation and at the WHO from a health workforce perspective.

Keep up with the latest global policy strategies and initiatives on human resources for health at:

World Health Organization Strategy on Human Resources for Health:

www.who.int/hrh/resources/globstrathrh-2030/en/ World Health Organization Strategic Direction for Nursing and Midwifery 2016 –2020: www.who.int/hrh/nursing_midwifery/global-strategic-midwifery2016-2020.pdf Join the Global Health Workforce Alliance:

www.who.int/hrh/network/en/ The Politics of Global Health in the United States of America 97 risk assessment of 79 behavioural, environmental and occupational, and metabolic risks or clusters of risks, 1990–2015: A systematic analysis for the Global Burden of Disease Study 2015. The Lancet, 388 (10053), 1659–1724. Institute of Medicine (IOM). (1997). America’s vital interest in global health: Protecting our people, enhancing our economy, and advancing our international interests. Washington, DC: National Academies Press. Institute of Medicine (IOM). (2009). The U.S. commitment to global health: Recommendations for the new administration. Washington, DC: National Academies Press. National Academies of Sciences, Engineering, and Medicine (NAS). (2017a). Global health and the future role of the United States . Washington, DC: National Academies Press. Retrieved from https://www.nap.edu/catalog/24737 /global-health-and-the-future-role-of-the-united -states National Academies of Sciences, Engineering, and Medicine (NAS). (2017b). New report recommends priority actions to achieve global health security, protect U.S. position as global health leader, and safeguard billions of dollars in health investments . Retrieved from http:// www8.nationalacademies.org/onpinews/newsitem .aspx?RecordID=24737 National Institutes of Mental Health (2017). Health statistics: Global index—DALYs . Retrieved from https://www.nimh .nih.gov/health/statistics/global/index.shtml Pandemic and All Hazards Preparedness Act (2006). Public Law 109–417. Retrieved from https://www.phe.gov /preparedness/legal/pahpa/pages/default.aspx United Nations. (2015). The Millennium Development Goals report: 2015. Retrieved from http://www.un.org /millenniumgoals/2015_MDG_Report/pdf/MDG%202015%20rev%20(July%201).pdf United Nations (2016). Sustainable Development Goals: 2016 . Retrieved from http://www.un.org/sustainable development/sustainable-development-goals/ World Health Organization. (2013). Global health workforce shortage to reach 12.9  million in coming decades. Retrieved from http://www.who.int/mediacentre/news /releases/2013/health-workforce-shortage/en/ World Health Organization (2015a). WHO progress report on nursing and midwifery: 2013–2015. Retrieved from http://www.who.int/hrh/nursing_midwifery /nursing-midwifery_report_13-15.pdf?ua =1 World Health Organization (2015b). Options analysis report on strategic directions for nursing and midwifery: 2016–2020 . Retrieved from http://www.who.int/hrh /nursing_midwifery/options_analysis_report/en/ World Health Organization (2016). Global strategic directions for strengthening nursing and midwifery: 2016 –2020 . Retrieved from http://www.who.int/hrh/nursing _midwifery/global-strategic-midwifery2016-2020.pdf global-health-and-the-future-role-of-the-united- states.aspx. There is also a Blueprint for Action in Table 10-1 of the NAS Global Health report (2017a), which outlines the recommendations pertinent to each national entity with actions to achieve global health security and enhance productivity and economic growth worldwide.

▸ Conclusion Global health, and its challenges and threats, re - main a top priority for world leaders and health professionals. This chapter focuses on the poli - tics, the policies, and the advocacy strategies that nurses and health professionals need to engage in to improve health services and ensure positive health outcomes for our world’s populations. It is a call to action for the United States and other nations to commit to investing in global health, and for nurses and health professionals to ad - vocate for investment in global health. To learn more, read the latest report from the National Academies of Sciences, Engineering, and Med - icine, Global Health and the Future Role of the United States (NAS, 2017). Discussion Questions 1. What are politics of global health in the context of the latest National Academies of Science’s report, Global Health and the Future Role of the United States (NAS, 2017)? 2. Identify global health initiatives important for nurses and other health professionals. 3. Describe specific actions nurses and other health professionals can take to become advocates for global health policy and advocacy. References Forouzanfar, M. H., Afshin. A., Alexander, L. T., Anderson, H. R., Bhutta, Z. A., & Biryukov, S . . . Murray, C. J. (2016). Global, regional, and national comparative 98 Chapter 5 Global Health: A Vision for Action they ran through the streets of some unknown war torn city. Then, on my first day, I saw a father holding his lifeless boy with a despairing look on his face just like I had seen countless times on media channels.

Only this time, he was running towards me. On my first day working in the field hospital, I bore witness to the horrors I had seen on their faces and to the true meaning of inhumanity.

Ambulances packed with dismembered people came crashing in in waves. Once the ambulance doors opened, with every person I triaged, I was struck by the absurdity of the words I was dictating:

“toddler with a mortar injury,” “man with a left leg amputation,” “woman with an abdominal wound from a sniper attack,” “child with a blast injury from a landmine.” I ran back to a small area within the emergency room designated for stabilizing the most critical patients, the red zone, to direct the local nurses towards different tasks.

I then proceeded to finding the woman who’s disembodied leg I had picked up along the way.

We never found the person this leg belonged to.

Reflecting back upon this, I realize that in the midst of all the chaos of stabilizing patients, I did not notice how unhinged some of the things we did and witnessed were at the time they happened. Not far off, loud explosions followed by black smoke and white mushroom clouds painted the sky. I could hear the sound of whistling bullets flying overhead, and just down the street from the field hospital, a military point shelling into the old city. The conditions were horrendous and at times I found myself questioning my presence there. MSF local staff had been living under the Islamic State of Iraq and the Levant (ISIS), and were victims of war themselves. They chose to take the risk to work with us, and were motivated to help these victims within their own community. Most of the staff worked and slept at the hospital for one week, then travelled hours to return to where their families had relocated for their week off.

However, some members of their own family were still trapped inside the Old City. Their anxiety was palpable; the next patient could potentially be one of them. It was all very surreal. The war that was at first happening to strangers in a distant country in the Middle East was now happening to people I call my friends and my family. Working in global health CASE STUDY Restoring Humanity in a War Zone: One Nurse’s Experience Mosul Case Study Valerie Gruhn Background Overnight, the people of northwestern Iraq were suddenly stripped of all forms of human rights.

In October 2016, Iraqi military forces, along with an international coalition, launched an operation to defeat the Islamic State in the governorate of Nineveh. International humanitarian groups boosted all efforts to install trauma stabilization posts, as well as field hospitals in and around Mosul, to provide lifesaving care. In March 2017, I had been deployed to West Mosul by the humanitarian organization Médecins Sans Frontières (MSF), also known as Doctors Without Borders (Doctors Without Borders, n.d.), to open a hospital and assist with the escalating humanitarian crisis. At that time, 400,000 civilians were still trapped in the Old City alone (United Nations, 2017). In their attempts to escape, civilians were often targeted by snipers or used as human shields. Women and children were exploited and turned into sex slaves. Civilian men, if captured, were tortured and/or executed.

The battle for Mosul became a complicated urban war that created immense suffering and countless casualties. The use of massive firepower and aggressive military tactics by the Iraqi Forces, the International Coalition Forces, as well as the Islamic State were responsible for the innumerable loss of life that occurred since the beginning of the battle. The BBC stated, “ The mission is now regarded as the single largest urban battle since World War II” (Rodgers, Stylianou, & Dunford, 2017).

It Is Personal I was no longer a third party. For years, I had watched sensational 3-second videos of parents carrying bodies of their children dangling in their arms as Case Study 99 CASE STUDIES doctor who told me how he managed to flee:

“My wife and I, we ran from building to building and hid with my son. We took a boat to get to the other side of the Tigris River. It only took thirteen minutes, but it felt like days. I thought we were going to die! When I heard about an organization that was helping my people, I immediately applied to work for MSF. We were afraid that you would think that we were all ISIS, but you didn’t. You gave us work, you gave us life, and you made us human again.” Towards the final phases of the battle, when the city of Zanjili was liberated, in an effort to escape, many people had been wounded. The exodus meant that hospitals were activating their mass casualty plan, and were planning to receive an influx of wounded patients within the hour.

Among them was a 4-year-old girl, with an open head injury, who arrived to our hospital separated from her family while escaping. I was hopeful that they had been brought to other facilities, yet the alternative had not bypassed my thoughts. When she woke up, she cried for her mother until I took her in my arms in order to comfort her, and slept by her side to keep a much-needed close eye on her. The local nurses circulated her picture on Facebook, which would get shared by others. Many families were reunited in this manner, including our little fighter. Within 2 days, the mother appeared with her two siblings, injured, but relieved that her baby was still alive. Their father had been killed in their attempt to escape. I take comfort in these abstruse survival stories.

The Politics of Caring These are the stories of the people of Mosul.

Those who survived now have an uncertain future; limbless and malnourished, people are starting over by finding the remains of their families to give them a decent burial. The children only know the sounds of war, and many are orphans who suffer from posttraumatic stress disorder. The general infrastructure of Mosul is crippled; homes, health facilities, and schools are in ruins, and there is no electricity or access to clean water or food. It will take years to rebuild and cost millions of dollars the country does not have.

Moreover, vaccination schedules were interrupted, and noncommunicable diseases were neglected, which is sure to cause meaningless disease and suffering for years to come. makes every crisis, every war, every bit of injustice, bigotry, or inequality, personal. What many often fail to understand is how fragile basic human rights are and how easily they can be taken away.

Ultimately, the one and only factor that makes us different from any of these victims or stories is simply the luck of where and when we were born.

Restoring Dignity Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world, Whereas disregard and contempt for human rights have resulted in barbarous acts which have outraged the conscience of mankind . . . (United Nations, 1948, p. 10) One month after my arrival, I was asked to open a hospital in West Mosul close to the frontline. The road towards West Mosul reflects the skeletons of what once used to be a bustling city. Empty streets, abandoned homes, collapsed buildings, and old car bombs are overturned on the roads. Additionally, truckloads of people who fled months prior were forced to come back and reinstall themselves to the rubble that once was their home, in order to make room for newly liberated people in the camps. “By the beginning of August, more than 800,000 were still regarded as displaced by the International Organization for Migration (IOM), more than half of those housed in camps or emergency sites” (Rodgers, Stylianou, & Dunford, 2017), only to face conditions in the camps that are an amalgam for the spread of infectious diseases. When opening a project, you have the chance to watch it evolve and bring in ideas and protocols that will immediately affect your patient population. However, it does not come without frustration, especially in such a complex context. Finding a stable structure to open an emergency project so close to the frontline, without putting everyone at risk is near impossible.

Yet, we were able to find one of the last standing buildings to provide emergency lifesaving care with surgical capacity near the frontline. We hired newly liberated staff and provided them with opportunities they did not have in years.

I remember a conversation I had with a local staff 100 Chapter 5 Global Health: A Vision for Action CASE STUDIES http://www.bbc.co.uk/news/resources/idt-9d41ef6c -97c9-4953-ba43-284cc62ffdd0 United Nations. (1948). Universal declaration of human rights . New York, NY: UN. Retrieved from http://www .un.org/en/universal-declaration-human-rights/ United Nations. (2017, March 24). Hundreds of thousands trapped in Mosul with ‘worst yet to come’- UN agency. UN News. Retrieved from http://www.un.org/apps/news /story.asp?NewsID=56423#.WZOcrtPyveR CASE STUDY NCDs: Nursing’s Opportunity?

Christine Hancock Founder and Director C3 Collaborating for Health Background Six years before noncommunicable diseases (NCDs) and prevention were included in the United Nations Sustainable Development Goals, C3 Collaborating for Health, a small London-based not-for-profit agency, was working internationally to address this escalating public-health crisis. Christine Hancock, then President of the International Council of Nurses, attended a conference that changed her life. After a career in nursing, specializing in cardiac care, working as a ward sister in London’s National Heart Hospital, Christine followed a career in nursing management, culminating in 12 years as CEO of the Royal College of Nursing where she was able to influence UK health policy, working closely with health ministers and probably visiting more hospitals and community facilities across the UK than anyone else. Christine next had a full term as President of the International Council of Nurses, when over 4 years she visited 50 countries and was able to see health care in action, and meet nurses and health ministers. Towards the end of that time, she learned of the growing epidemic of NCDs not, as once thought, diseases that only affected rich, elderly, fat Americans closely followed by the British, and she learned two startling facts: First that this epidemic was disproportionately affecting low and middle-income countries (LMICs), and second, it was happening at an earlier age than in western countries. No matter how much I feared the rockets and airstrikes, I was driven by the resilience of the survivors and the local nurses, who revealed to me what my obligation as a nurse truly is. By simply stepping out of my living room, I was no longer a passive bystander. Once you become the person a pleading father runs towards to hand his wounded child to, you are never the same again. Iraq will continue to bleed for many years to come. The truth is the politics of caring on a global scale is difficult, yet it has the power to restore humanity. In the words of Martin Luther King Jr.

“Our lives begin to end the day we become silent about things that matter.” Nursing gives us the ability to go beyond our own borders and use our voice to speak out about what we witness. “ The choice of where or how we care is ours ” (D. Nickitas, personal communication, August 15, 2017).

Case Study Questions 1. What do you think motivated the author to help this particular patient population? What motivated the local nurses? 2. Do you think the benefits of working in such a context outweighs the risks? Could she have been more effective helping a local population at home? 3. What were the most significant challenges you think the author faced in her initial days? 4. Using the American Nurses’ Association Code of Ethics as a guide, describe what you see as the most significant challenges you might face in respecting the professional boundaries of nursing vs. caring on a more emotional level? Does this change with a pediatric patient population? 5. Do you think the exposure to a life-threatening environment affected the author’s ability to perform her duties? 6. Referencing Maslow’s Hierarchy of Needs, describe how the author fulfilled each tier for her patients. What about for herself? How do you think your experience would differ, if at all? References Doctors without Borders. (n.d.). Charter. Médecins Sans Frontières (MSF) USA. Retrieved from http://www .doctorswithoutborders.org/about-us/history-principles /charter (accessed August 16, 2017). Rodgers, L., Stylianou, N., & Dunford, D. (2017, August 9). What’s left of Mosul? BBC News . Retrieved from Case Study 101 CASE STUDIES the environment in which we all live very much dictates our behavior. It can be difficult, if not near impossible, to adopt healthy behavior if your surroundings make being unhealthy the cheaper, easier option. That is why C3 uses a partnership approach to bring together different groups—individuals, communities, organizations, businesses, and policymakers—to collaborate on societal solutions that make it easier for people to live healthy lives. C3’s main work areas include businesses, including the workplace, professionals who can influence others, and local communities. Why would businesses care about NCDs? It is estimated that NCDs will cost the world’s economy about £30trillion over the next 20 years. The World Economic Forum has stressed that the NCD epidemic is one of the most important global risks in terms both of likelihood and severity. Health starts where you live, learn, work, and play, says Sir Michael Marmot, President of the World Medical Association. The place where you are born, grow up, and live is critical to your health throughout your life. Too often, governments and well-meaning people focus on convincing (they often say “educating”) individuals to change their unhealthy lifestyle, but fail to recognize the importance the environment has on our ability to choose healthy options: fresh or fast food? Green space or concrete? Walking and cycling or driving?

Social networks or isolation? All of these can influence the risks to our health. This is particularly true for disadvantaged communities, where healthy food options and opportunities for physical activity can be nonexistent, expensive, and/or unrealistic. The best way to break down the barriers to living a healthy life and creating sustainable change is to work with community members who are the experts in their environment and their health; the empowerment of people is essential to address the NCD epidemic. Health professionals are among those best placed to give the trusted, accurate advice needed to prevent and treat NCDs. C3 wants to stimulate a global movement to raise awareness, motivate, stimulate, educate, and support the global health workforce in promoting healthy behavior to combat the NCD epidemic. C3’s Healthy Nursing Collaborative is a network of nurses, nursing organizations, and other stakeholders, which aims There are 40 million deaths from NCDs occurring each year: 70% of the total. Most of these are caused by four diseases: cardiovascular disease (CVD), cancer, chronic obstructive pulmonary disorder (COPD), and diabetes. Eighty percent of these preventable deaths occur in LMICs and 48% NCD deaths in LMICs occur in people under 70 years old. The Word Health Organization ( WHO) estimates that 80% of heart disease, type 2 diabetes, and stroke, and 35% of cancers are preventable by focusing on just four risk factors:

smoking tobacco, increasing physical activity, reducing harmful alcohol use, and eating a healthy diet with less salt, sugar, and fats and more fruit, vegetables, whole grains, and nuts. There has been increasing global recognition that prevention and the risk factors of NCDs are critical issues. However, our work has become more urgent as the NCD epidemic escalates and health systems buckle under enormous financial demands. Using their extensive connections to bring together organizations, C3 Collaborating for Health began to imagine a world where there are no premature or preventable deaths from NCDs, by working towards a world where: ■ It is easier to live healthy lives. ■ Fewer fathers and mothers, brothers and sisters, and daughters and sons are dying at young ages from largely preventable diseases. ■ Prevention, health, and well-being are core to proper health care. ■ The focus is on not just on individual behavior change, but also on changing our environment.

C3 is unusual as it is global (not national or local), it is not disease focused like most charities, and it uses multisector collaboration to focus on the unhealthy behaviors that lead to NCDs:

tobacco use, unhealthy eating and drinking, and physical inactivity. While C3 does not work with the tobacco industry, a fundamental principle is to engage the business world, and that includes the food industry; many of these companies have played a part in our unhealthy lives, and C3 believes they need to be part of the solution. Although NCD prevention frequently focuses on individual behavior change, C3 knows that 102 Chapter 5 Global Health: A Vision for Action CASE STUDIES Case Study Questions 1. To what extent do health professionals have a responsibility to role model healthy behaviors? 2. What changes are needed in the work environment to ensure that health professionals are enabled to lead healthy lives at work? 3. How can initiatives such as C3’s Healthy Nursing Collaborative and ANA’s Healthy Nurse: Healthy Nation help build a culture of health in nursing? 4. What changes are needed to ensure that healthcare professionals receive appropriate education input and appreciation of public health issues to ensure a skilled workforce knowledgable in preventive health care, well-being, and public health? References C3 Collaborating for Health. (n.d.) Welcome to the Healthy Nursing Collaborative . Retrieved from https://www .c3health.org/our-projects/health-professionals /healthy-nursing-collaborative/ Marmot, M., Sir. (2015, November 3). The health gap: The challenge of an unequal world . London, UK: Bloomsbury Press. World Health Organization. (2009). 2008–2013 action plan for the global strategy for the prevention and control of noncommunicable diseases . Retrieved from http://www .who.int/nmh/publications/9789241597418/en/ to encourage sharing of evidence, resources, materials, and experiences to support nurses in leading healthier lives so they can better lead and help their colleagues, family, friends, and communities to live more healthily. C3 is interested in sharing evidence and good practice from around the world.

Conclusion There are more than 20 million nurses across the world; in some parts of the world they are the only health professionals people meet. Imagine the progress that could be made if all those nurses were supported with the knowledge, skills, and opportunities to promote healthy lifestyles and prevent NCDs. C3’s NCD nursing model does just that:

■ Help and support nurses to understand and improve their health. ■ Educate and promote health among their patients, families, and communities. ■ Disseminate knowledge and promote skills development with their colleagues. ■ Advocate for NCD prevention locally, nationally, and internationally.

Are you interested in making it easier for people to be more active, eat and drink better, and stop smoking tobacco? Case Study 103 CASE STUDIES © Anthony Krikorian/Shutterstock Mental and Behavioral Health Barbara Cohen OVERVIEW Mental health rights, resources, and policies that provide or limit mental health services are in the public spotlight on a daily basis. Mental health needs of Americans affect tens of millions of individuals.

The Substance Abuse and Mental Health Services Administration (SAMHSA) has reported that treatment of the sequelae of mental illness, including illnesses such as cardiac disease and diabetes, was in the $600 billion range (SAMHSA, 2014a). A brief overview of the 2016 SAMHSA report on the nation’s mental health (SAMHSA, 2017, pp. 1, 27) set out stark figures for Americans affected in 2015 by substance abuse and/or mental illness for individuals age 12 and older ( TABLE 6-1). The face of mental health has changed over the decades. Consumers of mental health services expect to be active partners in their treatment rather than passive recipients of others’ planning as in days gone by. Services to address bullying (in person and cyberbullying), suicide attempts, and the mental health needs of the lesbian, gay, bisexual, transgendered, and queer (LGBT-Q) population are growing. Cities are taking a more assertive approach to providing mental health care to citizens, advertising such services on public transportation and through television and other social media. The struggle for parity of mental health services with other medical services is ongoing, particularly in light of repeated efforts in the U.S. Congress to repeal and replace the Affordable Care Act provisions. This chapter provides an overview of the policies that have shaped and continue to shape the provision of mental health and behavioral health care services in the United States. The chapter explores resources available on national, state, and local levels throughout the United States. A discussion of policies that support expansion of mental health and behavioral health services to include active participation of consumers as partners in care is had. Policies aimed at promotion or limitation of mental health and behavioral health options for specific vulnerable groups are described.

The chapter concludes with an overview of the future possibilities of care in the mental health and behavioral health arenas. 105 CHAPTER 6 OBJECTIVES ■ Describe the recent past and current status of the provision of mental health and behavioral health services on federal, state, and local levels. ■ Discuss trends in mental health and behavioral health policies that have fostered greater consumer participation. ■ Analyze policies allowing the provision or denial of mental health and/or behavioral health care to specific groups of patients. health are defined, regulated, and legislated by our government. The U.S. Department of Health and Human Services (USDHHS) defines mental health as: “our emotional, psychological, and social well- being. It affects how we think, feel, and act. It also helps determine how we handle stress, relate to others, and make choices” (USDHHS, 2017). ▸ Introduction to Mental and Behavioral Health In order to understand policies related to men - tal health and behavioral health, nurses must first appreciate how mental health and behavioral TABLE 6-1 Number of Americans Affected by Substance Abuse and/or Mental Illness in 2015—Age 12 or Older Category of Substance Abuse Numbers of Americans Affected Illicit drug use in past 30 days 27.1 million (10.1% of all Americans) Cigarette smoking 52.0 million Current use of alcohol 138.3 million Category of Mental Illness Numbers of Americans Affected Adults receiving mental health care 34.2 million Adults with AMI 43.4 million (17.9% of all adults) Adults with AMI and SUD 8.1 million (3.3% of all adults) Adolescents with MDE 3.0 million (12.5% of all adolescents) Adolescents with SUD and MDE 350,000 (1.5% of all adolescents) AMI 5 any mental illness; SUD 5 substance use disorder; MDE 5 major depressive disorder. Source: Center for Behavioral Health Statistics and Quality. (2016). Key substance use and mental health indicators in the United States: Results from the 2015 National Survey on Drug Use and Health (HHS Publication No. SMA 16-4984, NSDUH Series H-51). Retrieved from https://www.samhsa.gov/data/sites /default/files/NSDUH-FFR1-2015/NSDUH-FFR1-2015/NSDUH-FFR1-2015.pdf 106 Chapter 6 Mental and Behavioral Health The World Health Organization (WHO) defines mental health as: “a state of well- being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his com - munity” (WHO, 2014). The Substance Abuse and Mental Health Services Administration (SAMSHA) (2014b) defines behavioral health as “mental/emotional well-being and/or actions that affect wellness.

Behavioral health problems include substance use disorders; alcohol and drug addiction; and serious psychological distress, suicide, and mental disorders. Problems that range from unhealthy stress or subclinical conditions to diagnosable and treatable diseases such as se - rious mental illnesses and substance use disor - ders are included.” “Behavioral health” has also been used as a “phrase to describe service sys - tems that encompass prevention and promotion of emotional health; prevention of mental and substance use disorders, substance use, and re - lated problems; treatments and services for men - tal and substance use disorders; and recovery support” (SAMHSA, 2014b). With the defini - tional frameworks in mind, a view of past and current federal, state, and local policies regard - ing mental health will be explored, beginning with the federal government level.

▸ Federal Government and Presidential Efforts to Improve the Nation’s Mental Health President Harry Truman signed the National Mental Health Act in 1946 (Public Law 79-487) calling for the establishment of the National In - stitute of Mental Health (NIMH). The NIMH, established in 1949, provides legislative policy guidance for important federal initiatives. Ex - ploration of the mental health needs of Ameri - cans expanded in the 1950s and 1960s. The Mental Health Study Act of 1955 (Pub - lic Law 84-182) focused upon analyzing and re- evaluating the impact of mental health issues in the United States. Congress passed the Mental Retardation Facilities and Community Mental Health Centers Construction Act (Public Law 88-164) and the NIMH ’s duties were to mon - itor the nation’s community mental health cen - ter (CMHC) programs. National action was recommended for child mental health in the mid-1960s. President Jimmy Carter established the President’s Commission on Mental Health in 1977. The repeal of the Mental Health Sys - tems Act in 1981 created opportunities to enable each state to administer its own funds through block grants. In the 1990s, focus was placed on basic and clinical neuroscience research, services and inter - vention research, mental disorders, behavioral research, and acquired immunodeficiency syn - drome (AIDS). The Substance Abuse and Men - tal Health Services Administration (SAMHSA) was created in 1992. In looking at the panoply of mental health challenges, the U.S. Surgeon General has focused on suicide prevention; SAMHSA and the NIMH have expanded ser - vices focusing not only on suicide, but also on eating disorders, panic disorders, and anxiety disorders. NIMH Depression Awareness, Rec - ognition and Treatment (DART) programs were expanded to address the needs of men suffering from depression and survivors of mass violence in the 2000s. Outreach to Native American and Hispanic populations increased in light of ris - ing incidences of substance abuse and mental health issues. Additional emphasis was placed upon treatment for severe persistent mental ill - nesses such as schizophrenia and bipolar disor - der. Research into support for veterans as well as for those suffering from autism was expanded in the late 2000s through the Children’s Health Act of 2000 (Public Law 106-310), and again in 2006 through the Combating Autism Act of 2006 (Public Law 109-416). In 2011, the NIMH funded the Grand Challenges in Global Mental Health with 400 participants conducting research in 60 countries concerning mental, neurological, and Federal Government and Presidential Efforts to Improve the Nation’s Mental Health 107 and also focuses on support of coordination of care and services across systems” (SAMHSA, 2014a, p. 14). The third strategic initiative aims to reduce harmful effects of trauma and violence on chil - dren and youth, adults, families, and commun - ities. The criminal and juvenile justice system has received special attention as individuals with mental illness are frequently routed through these systems without the provision of appro - priate healthcare alternatives. These efforts in - clude treatment for survivors of mass trauma (SAMHSA, 2014a, p. 19). This is particularly important given the uptick in mass shootings such as the Aurora Theater in Colorado in 2012; the 2012 Sandy Hook Elementary School shoot - ing in Newtown, Connecticut; the 2018 Mar - jory Stoneman Douglas High School shooting in Parkland, Florida; and the increase in natural disasters such as Hurricanes Katrina (2005), Sandy (2012), Harvey (2017), Jose (2017), and Irma (2017). The fourth initiative focuses on re - covery support to assist individuals in recovery from mental illness and substance use disorders and their family members to maximize use of appropriate programs and systems to maintain recovery, and to improve housing and employ - ment options (SAMHSA, 2014a, p. 23). Health information technology (HIT) is at the center of the fifth strategic initiative for SAMHSA. The use of HIT to measure and track health disparities and their reduction, and the use of smartphones to make HIT accessible across diverse populations are two aspects of this ini - tiative (SAMHSA, 2014a, p. 27). Lastly, the sixth strategic initiative addresses workforce develop - ment to expand the behavioral health workforce and improve behavioral health knowledge and skills of those not working in the field of behav - ioral health (SAMHSA, 2014a, p. 31). SAMHSA provides various engagement strategies aimed at collecting data on national and state levels of alcohol, tobacco, and illegal drug use and abuse, and their effects on behav - ioral health, including the National Survey on Drug Use and Health (NSDUH) and the Be - havioral Health Barometer (SAMHSA, 2017). substance use disorders. Prevention of suicide and preventing mass shootings and managing survivors gained support through executive or - ders signed by President Barack Obama in 2012 (Obama, 2012) and 2013, recognizing issues sur - rounding posttraumatic stress disorder (PTSD) and traumatic brain injury (TBI), and further - ing our understanding of the functions of the brain (NIMH, 2017). The NIMH works in conjunction with the Centers for Medicare & Medicaid Services (CMS), Children’s Health Insurance Program (CHIP), and SAMSHA. NIMH provided a 2015 infor - mational bulletin to state Medicaid directors concerning coverage of treatment for first epi - sode psychosis, providing support for coordi - nated specialty care (CSC), an evidence-based treatment approach that had been explored in the NIMH’s RAISE (Recovery After an Initial Schizophrenia Episode) project (NIMH, 2017).

In addition to the NIMH, SAMHSA provides additional support and guidance on a federal level in the area of behavioral health. SAMHSA (2016) provides national poli - cies improving services to meet the behavioral healthcare needs of individuals, communities, and service providers. SAMSHA’s 2014 to 2018 initiatives include: (1) the prevention of sub - stance abuse and mental illness, (2) healthcare and health systems integration, (3) trauma and justice, (4) recovery support, (5) health infor - mation technology, and (6) workforce develop - ment (SAMHSA, 2014a). The first initiative, the prevention of sub - stance abuse and mental illness, focuses on high-risk populations including “college stu - dents and transition-age youth; American Indian/ Alaska Natives; ethnic minorities experiencing health and behavioral health disparities; ser - vice members, veterans and their families; and lesbian, gay, bisexual, and transgender (LGBT) individuals” (SAMHSA, 2014a, p. 10). The sec - ond initiative, healthcare and systems integra - tion, focuses in part on “reducing the disparities between availability of services for mental ill - ness and substance abuse compared to the avail - ability of services for other medical conditions 108 Chapter 6 Mental and Behavioral Health (NAMI), a grassroots organization advocating for those with mental illness and their families, reviewed the status of the provision of mental health services by states’ efforts (NAMI, 2015).

The economic recession resulted in state bud - get cuts of $4.3 billion from the overall mental healthcare system. Only 12 states have steadily increased investments in mental health ser - vices (Arizona, Colorado, Connecticut, Dela - ware, Idaho, Minnesota, New Hampshire, New Jersey, South Carolina, South Dakota, Virginia, and Washington) while other states have declined in budgeted funds provided for mental health services, including Kentucky, Arkansas, Alaska, North Carolina, Wyoming, Iowa, Kansas, Ohio, and the District of Columbia (NAMI, 2015).

Strong leaders in the field of mental health are Minnesota, New York, and Virginia. While there is mixed reporting of progress at the state level, progress for state initiatives in the form of sig - nificant block grants is available or potentially available through the 21st Century Cures Act (Public Law No. 114-255), signed into law on December 13, 2016 by President Obama. Block grants issued by the federal government allow states to determine the proportion of funding to be ascribed to particular public needs (Con - gressional Budget Office, 2013). This law focuses on many areas of policy weakness in the fields of mental health and behavioral health from the criminal justice system, homelessness, under - age substance abuse, extension of child psychi - atry services, and workforce issues. With states having the decision-making power for alloca - tion of grant block funds, in many states, there has been a decline in funding for mental health services, as noted above. 21st Century Cures Act, Titles VI, VII, VIII, and IX address strengthening community mental health services through increasing community mental health services block grants, and addi - tional programs to provide enhanced relief for homeless individuals, individuals in need of sub - stance abuse recovery programs, grants for jail diversion programs, dealing with suicide, assisted outpatient treatment, and underage drinking prevention programs, among other state-based In addition, SAMHSA conducts public aware - ness campaigns aimed at underage drinking and mental health; the Synar Program established in compliance with the Synar Amendment (Alco - hol, Drug Abuse, and Mental Health Administra - tion Reorganization Act, Public Law 102-321, sec.

1926) to prevent tobacco sales to minors; as well as work-related programs to provide drug-free workplaces, methadone–opioid treatment pro - grams, and workplace drug-testing programs. By providing grants, SAMHSA helps in the creation of a variety of programs such as: (1) homeless - ness reduction; (2) criminal justice services for those suffering from mental illness; (3) zero sui - cide programs; (4) systems of care planning and expansion; (5) tribal behavioral health screen - ing, brief intervention, and referral to treatment and prescription drug monitoring programs; (6) minority fellowship programs; (7) workforce development; and (8) the Strategic Prevention Framework–Partnership for Success (SPF-PFS) grant program aimed at preventing underage drinking for individuals age 12 to 20 and avoid - ing prescription drug misuse by persons age 12 to 15 (SAMHSA, 2014a, p. 5). NIMH and SAM - SHA lead the way on a national level; with these supports and resources, states have improved pro - vision of mental health services to some extent.

▸ State-Related Mental Health Policies The increases in federal government opportun - ities led to increased interest and participation on the state level through block grants allow - ing states to address Medicaid, insurance parity, workforce capacity, school-based mental health, criminal justice, and suicide prevention. Less well addressed are early identification and inter - vention programs, school-linked mental health services, housing, and employment (National Alliance on Mental Illness [NAMI], 2015). At the same time, states have been and continue to be affected by the recent economic reces - sion. The National Alliance on Mental Illness State-Related Mental Health Policies 109 assist relatives suffering from severe persistent mental illness. Services are also provided on a home-based intervention or emergency hospi - talization intervention for children and adoles - cents under the age of 18 ( Crisis Mental Health Services, 2018). Inpatient facilities are not the only option for New Yorkers. There are many supportive living communities for formerly homeless, mentally ill individuals in New York City. An example is the housing facilities set up by Community Counseling & Mediation Ser - vices in Brooklyn, funded by a variety of city, state, and federal grants (www.ccmnyc.org).

New York City has also set up a strong infra - structure in the justice system to improve the lives of those affected by mental illness through Court-based Intervention and Resource Teams (CIRTs), which were created through the Mayor’s Office for Criminal Justice in collaboration with the New York City Departments of Correction and Mental Hygiene. CIRTs operate in each borough of the city, focusing on people detained at Rikers Island who have symptoms of mental illness and can be safely supervised in the community. These teams are structured to provide an alternative to detention for people awaiting trial and alterna - tives to incarceration for those facing short jail sentences (CASES, 2017). Although New York City and other cities provide a variety of sup - port services for mental health and substance abuse crisis, these types of services may not be available to all our nation’s citizens. There are significant differences in avail - able workforce members and mental health services provided between urban/suburban and rural communities. The first national sur - vey of programs serving American Indian and Alaska Native (AIAN) communities was con - ducted by Rieckmann, Moore, Croy, Novins, & Aarons (2016). They found that “programs in rural areas were less likely to have nurses, trad - itional healing consultants, or ceremonial pro - viders on staff, to consult outside evaluators, to use strategic planning to improve program qual - ity, to offer pharmacotherapies, pipe ceremo - nies, and cultural activities among their services efforts. The 21st Century Cures Act also ad - dresses strengthening the healthcare workforce, particularly in the area of grants for mental and behavioral health education and training, min - ority fellowships, eligibility for loan repayment programs, and college mental health services.

Children and adolescents are to benefit from this bill through increased programs for chil - dren with serious emotional disturbances, in - creased access to pediatric mental health care, substance abuse treatment and early interven - tion services for children and adolescents, trauma recovery, and screening and treatment for ma - ternal depression. Mental health and substance use disorder parity for insurance coverage, as well as Medicaid and Medicare coverage, is ad - dressed within this bill. Mental health and safe communities (Title XIV) address innovations in assisted outpatient treatment programs, federal drug and mental health courts, co-occurring substance abuse and mental health challenges in drug courts, and active shooter training for law enforcement among other initiatives.

▸ City and Community-Directed Mental Health Care Efforts City services and community-directed men - tal healthcare efforts provide many new ini - tiatives in line with federal and state initiatives and grant funding. New York City’s provision of 24/7 mental health counseling services high - lights the city’s commitment to improving and ensuring its citizens’ mental health. These ser - vices are publicized throughout the mass tran - sit system, as well as through local television.

New York City text and/or phone services for emergency mental health situations provide ad - vice for confidential mental health or substance abuse situations. Mobile crisis teams are avail - able to assist in emergencies including provid - ing services to family members attempting to 110 Chapter 6 Mental and Behavioral Health perspectives have placed significantly more input in the hands of consumers and their significant others. The United States moved over a period from 1840 through 1854 from unsanitary, dan - gerous environments for the mentally ill to state hospital systems in at least 18 states (Parks & Radke, 2014). The state psychiatric hospital sys - tems continued to expand until the 1960s and 1970s when deinstitutionalization became the norm, dismantling many of these state hospi - tal systems following the passage of the Com - munity Mental Health Centers (CMHC) Act of 1963, (Public Law 88-164, 77 Stat. 282). At that point, many of the state hospital systems were dismantled and patients deinstitutionalized. In - vestigative reporting, such as that completed by Geraldo Rivera, led to the discovery of numer - ous patient abuses at Willowbrook State Psychi - atric Center, leading to its closure and alerting the public as to the conditions under which those with mental health issues had been suf - fering (Rivera, 2017). The recovery movement has flourished; recovery was defined by the New Freedom Commission on Mental Health (2003) as: “the process in which people are able to live, work, learn, and participate fully in their com - munities. For some individuals, recovery is the ability to live a fulfilling and productive life de - spite a disability. For others, recovery implies the reduction or complete remission of symp - toms” (p. 5). Community-based services in which con - sumers (formerly referred to as patients) par - ticipate fully, serve on committees, and act as decision makers, have become the norm. A full exploration of the development, challenges, and successes of the recovery movement is beyond the scope of this chapter; however, Braslow (2013) provides an excellent overview of the historical development and current status of this movement. Clubhouse International (2016) provides environments in which individuals recovering from mental illness can rejoin or engage in ad - ditional education, employment, family, and friendship opportunities while being supported and restored to health. There are hundreds of and to participate in research or program evalu - ation studies” (Rieckmann et  al., 2016, p. 46).

Rural providers were “more likely to employ el - ders among their traditional healers, offer AA- open group recovery services and collect data on treatment outcomes” (Rieckmann et al., 2016, p. 46). Substance abuse, including binge drinking, is prevalent in this population. There is a “dis - parity in the rates of substance abuse disorders among AIAN populations, and a mismatch be - tween the geographic distribution of the AIAN population and access to Indian Health Service coverage” (Rieckmann et al., 2016, p. 47). Pro - grams are tribally owned or owned by the In - dian Health Service or federal entities. “Funding comes from several sources such as direct fund - ing (Indian Health Service), enhanced funding (state block grant, tribal) and reimbursed ser - vices (fee for service, including Medicaid). Grants (federal and non-federal grants or contracts) were utilized by slightly more than one-third of the programs” (Rieckmann et  al., 2016 p. 52).

These sorts of disparities are seen across the na - tion, mapped through the areas of health short - ages by the federal government. In addition to federal, state, city, and community services, we also see the active involvement on all levels by consumers of mental health services themselves.

▸ Policies Encouraging Consumer-Directed Mental Health and Behavioral Health Services (The Recovery Movement) Mental health care has been traditionally designed without the input of the consumers (formerly known as patients). Care was given to consum - ers with or without their consent but not ne - cessarily with their input into the environment in which care was to be given. Current policy Policies Encouraging Consumer-Directed Mental Health and Behavioral Health Services (The Recovery Movement) 111 55% of office-based psychiatrists accept health insurance. Patients who actually see a psychia - trist may also incur large out-of-pocket expenses (Bishop et al., 2016). The Health Resources and Services Administration (HRSA) estimated that the current supply of psychiatrists only meets the need in half of the Health Professional Shortage Areas (HPSAs) (Bishop et al., 2016). This is de - spite the Paul Wellstone and Pete Domenici Men - tal Health Parity and Addiction Equity Act of 2008 (Public Law 110-343, 122 Stat.5765), which calls for treatment of mental illness and substance use disorders on the same scale as treatment for other health conditions. Policymakers and the health - care community must address shortages and im - prove access to mental health care. Bishop and colleagues (2016) suggest that this can be accom - plished by “increasing the number of students pursuing careers in psychiatry, reducing attrition among practicing psychiatrists and developing alternative workforce strategies” (p. 1275). In - creased compensation and loan repayment pro - grams could serve as incentives (Bishop et  al., 2016). The number of psychiatric nurse practi - tioners in the U.S. who are able to diagnose and treat mental illness, including prescription of med - ication, has increased, possibly easing the short - age of mental healthcare providers able to both diagnose and prescribe. The recently passed 21st Century Act (2016) contains provisions aimed at increasing education and training in the fields of mental health and behavioral health. An ex - panded and well-educated workforce will be es - sential to keep pace with the increasing mental health and behavioral health needs of our society.

In addition to increasing the workforce, services to vulnerable populations must also be created, supported, and defended.

▸ Groups Requiring Additional Political Protection In the past decades, the LGBT-Q (lesbian, gay, bisexual, transgendered, and queer) community clubhouses around the world, some accredited by Clubhouse International and others that are freestanding. The Rainbow Heights Club provides ser - vices to a specific set of consumers, describing its mission as: “to bring innovative, affirming, and effective treatment advocacy and support services to LGBT people living with mental ill - ness provided in an atmosphere of hope, re - covery and partnership” (2017). Consumers themselves have formed charitable organiza - tions to provide services and information to other consumers and to assist in the creation and maintenance of mental health consumer rights (MindFreedom, n.d.).

▸ Challenges in the Provision of Mental Health and Behavioral Health Services There are many challenges from a historic view - point, as well as from the current healthcare landscape, which make the provision of health - care services that much more difficult. Some of those challenges involve workforce availability and structure, some challenges affect the pro - vision of health care to vulnerable groups, and some challenges are financially based. There is a workforce shortage in the areas of mental and behavioral health.

Workforce Availability The population of practicing psychiatrists in the United States declined 10.2% per 100,000 resi - dents in hospital referral regions between 2003 and 2013 (Bishop, Seirup, Pincus, & Ross, 2016).

9.8 million adults, or 4.0% of the U.S. adult pop - ulation, have a serious mental illness that inter - feres with their major life activities (Center for Behavioral Health Statistics and Quality, 2016).

Primary care physicians reported difficulty in re - ferring patients for mental health care and only 112 Chapter 6 Mental and Behavioral Health in ensuring the civil rights of transgender stu - dents, including policies concerning use of school bathrooms consistent with the gender identity of the student (2016). The U.S. Departments of Justice and Edu - cation rescinded the original “Dear Colleague” letter on February 22, 2017 (U.S. Department of Justice and U.S. Department of Education, 2017).

The U.S. Supreme Court subsequently refused to hear the case of Gavin Grimm, a transgen - der high school student, and reversed the lower court ruling in favor of the student, which ad - dresses the question as to the rights of a trans - gender high school student to use the bathroom of his choice ( Gloucester County School Board v. G.G. , 2017). Support for the transgender com - munity’s mental health and behavioral health needs continues to be weakened and require further activism and support. Additional support through the enactment of anti-discrimination and hate crime legal pro - tections is warranted. A recent study of trans - gendered veterans, for example, in states with and without such protections found that em - ployment nondiscrimination protection was associated with 26% decreased odds of mood dis - orders and 43% decreased odds of self- directed violence (Blosnich et al., 2016). Other vulner - able populations require policy support to ob - tain appropriate mental health and behavioral health services.

▸ Lower Socioeconomic Status–Related Mental Health Policies Socioeconomic disparities affect mental health.

States have not only approached improving mental health via traditional health services approach, but have attempted to improve so- cioeconomic aspects of individuals’ and fam - ilies’ lives with the goal of improving mental health. Offering of housing vouchers is one such approach that has been utilized in an at - tempt to improve mental health outcomes for has moved its legal rights and political agenda forward, particularly in the arena of health care. Additional rights include insurance cov - erage tangentially made possible via the Mar - riage Equality Act as upheld in Obergefell v. Hodges by the Supreme Court of the United States (2015) and through extension of federal rights to same sex partners. Obergefell held that marriage is a fundamental constitutional right given that, regardless of sexual orientation, mar - riage is one of life’s most intimate decisions— whatever one’s sexual orientation. The Court in Obergefell (2015) set forth the right to marry as a safeguard for children and families and de - scribed marriage as a keystone of the nation’s social order ( Obergefell , 2015, p. 16). Despite this resounding support of marriage equality, the rights of the LGBT-Q community continue to be challenged, creating and exacerbating at - tendant mental health stressors. Movement forward in one sphere of en - gagement has also involved movement in re - verse in others, particularly for transgendered individuals. Today, 150,000 students between the ages of 13 and 17 (0.7% of this age group) identify as transgendered (Williams Institute, 2017) and 0.6%, or 14 million individuals, iden - tify as transgender in the United States (Flores, Herman, Gates, & Brown, 2016). A large online survey of the experiences of transgendered in - dividuals across the United States found in - creased minority stress for these individuals.

Experiences that increased stress and decreased health were, in part, related to the lack of pub - lic policy initiatives to “confront social struc - tures, e.g., gender-segregated restrooms and social groups), norms (e.g., gender role expecta - tions) and attitudes (e.g., prejudice in the work - place) that produce minority stress to reduce the high rates of psychological distress found among transgender and other minority popula - tions” (Bockting, Miner, Romine, Hamilton, & Coleman, 2013, p. 950). The U.S. Department of Justice and the U.S. Department of Education, with the sup - port of then President Barack Obama, released joint guidance, pursuant to Title IX of the Ed - ucation Amendments of 1972, to assist schools Lower Socioeconomic Status–Related Mental Health Policies 113 transgendered service people, attention has been focused upon servicewomen and female veterans in recent years. United States Army women suffering administratively recorded sex - ual assault had significantly elevated odds ratio of subsequent mental health treatment, post - traumatic stress disorder treatment, inpatient treatment, and demotion or attrition. Suicide attempts and poor career outcomes are also re - lated to sexual assault during military service.

It was concluded that “sexual assault victimiza - tion is associated with considerable suffering and likely decreased force readiness” (Rosellini et  al., 2017, p. 732). LGBT-Q service officers have been encouraged by health policy changes offered through the passage of the Don’t Ask, Don’t Tell Repeal Act of 2010 (Public Law No:

111-321) paving the way to allow soldiers al - lowing these soldiers to “come out” to their commanders and colleagues and receive men - tal health accommodations and treatment. An abrupt reversal of this policy has been set in mo - tion through a Presidential Memorandum for the Secretary of Defense and the Secretary of Homeland Security (2017) prohibiting service by transgender service members and barring funding to pay for sex reassignment surgeries except to protect the health of a serviceperson whose surgical course was already in progress.

This executive order affects the mental health of those service people who now face uncer - tainty in both their service in the military and uncertainty in the availability of health care connected to gender preference. In response, on October 12, 2017, the U.S. House of Rep - resentatives introduced H.R. 4041, the aim of which is to provide for the retention and ser - vice of transgender members of the Armed Forces. We have seen the effects that policies may have on the mental health of vulnerable populations. Given the number of Americans across the board who require assistance and support in the areas of both mental health and behavioral health, it is important to ex - amine some of the financing issues involved in access to care. vulnerable populations. Families with adoles - cents aged 12-19 were offered housing vouchers under a “Moving to Opportunity” experiment (Nguyen, Rehkoph, Schmidt, & Osypuk, 2016).

Comparison was made between 2,829 ado - lescents whose families were offered housing vouchers versus those families living in pub - lic housing. It was determined that housing vouchers alone were not the sole determin - ant of benefit to participants. Simply chang - ing participants’ zip code did not guarantee an improvement in mental health; rather, supple - mental services may also be needed to improve the health of these vulnerable subgroups, such as health clinics, youth programs, child care providers, transit authorities, and career ser - vices (Nguyen et al., 2016). In addition to the LGBT-Q population and populations faced with lower socioeconomic status challenges, veter - ans have also become a population requiring targeted mental health and behavioral health policies. These policies have benefits and draw - backs as seen next.

▸ Veterans’ Use of Mental Health Services and Policy Issues We have seen an upswing in the use of mental health services by U.S. veterans between 2001 and 2010 (Tsai & Rosenheck, 2016). Veterans of the Persian Gulf, Iraq, and Afghanistan wars are more likely to have used mental health ser - vices than in previous eras. In addition, these groups of service personnel are more likely to have received U.S. Department of Veterans Affairs (VA) disability compensation (Tsai & Rosenheck, 2016). It will be one of the future challenges of our mental health and behavioral health policymakers to ensure continued ac - cess to services that meet future demands and keep pace with the growth in need for these services. In addition to attention focused upon 114 Chapter 6 Mental and Behavioral Health increased services to improve mental health has been proposed. Funding for services re - lated to common sequelae of mental illness has also come under consideration. Adults with serious mental illness have a de - creased life expectancy than the average Amer - ican by about 10 years, yet, exercise, which is a first-line treatment to combat cardiovascular disease, diabetes, and obesity, is not a funded treatment under Medicare, Medicaid, nor pri - vate insurers. It is suggested that new legisla - tion is needed to allow for reimbursement of “evidence-based exercise programs for people with serious mental illness treated in commu - nity mental health settings to foster improved mental and physical health outcomes and re - duce healthcare costs for this vulnerable pop - ulation” (Pratt et al., 2016, p. 478). Currently, healthcare policies deny community mental health programs the financial ability to offer exercise programming. Funds for training staff to deliver preventive health services in com - munity mental health programs are scarce and “billing rules set by the Centers for Medicare & Medicaid Services (CMS) and private insurers prohibit most allied health professionals from receiving reimbursement for providing exercise programming in mental health settings” (Pratt et al., 2016). The Society of Behavioral Medi - cine and the American College of Sports Medi - cine recommend promotion of evidence-based exercise programming for people with serious mental illness by allowing reimbursement by regional and national healthcare providers in SAMHSA’s National Registry of Evidence-based Programs and Practices (NREPP) and requir - ing the provision of programs of adequate du - ration, frequency of contact, and support from fitness professionals (Pratt et  al., 2016). Sec - ondly, they recommend expanded healthcare services for people with serious mental ill - ness by specifying exercise programming as a reimbursable service through the Affordable Care Act, including Medicaid 1915(i) State Plan and Community-Based Services Pro - gram and adaptations of the Specialty Health ▸ Policy Innovations to Improve Mental Healthcare Outcomes It is insufficient to spend funds on various approaches to mental health and behavioral health services. It is important to give thought to whether those funds are being used wisely so as to maximize benefits to both the partic - ipants and the healthcare system. Improve - ments in mental health, employment, and quality of life outcomes for people on Social Security Disability Insurance (SSDI) were had through the Social Security Administration’s Mental Health Treatment Study (MHTS). At the same time, provision of services did not reduce the number of SSDI recipients (Drake, Frey, Karakus, Salkever, Bond, & Goldman, 2016) leading to the recommendations of focusing future research on prevention rather than re - habilitation, streamlining funding and infra - structure for training and service integration, and improving financing strategies for insur - ance coverage for individuals with disabilities.

Again, as with the Indian Health Service and funds utilized for treatment for AIANs, there are significant concerns about political intent to reduce the overall SSDI expenditures with a concomitant reduction in care for affected individuals. Few people who obtain SSDI re - turn to work; once individuals start receiving payments and Medicare insurance, there is lit - tle incentive to leave the system ( Drake et al., 2016, p. 2). The Affordable Care Act remedied some of these issues by allowing individuals with preexisting conditions to obtain insur - ance and also through expansion of Medicaid in some states. As the Trump Administration seeks to repeal or significantly alter the Af - fordable Care Act, those individuals receiving SSID may, once again, remain on the public dole, fearing to participate in gainful employ - ment for fear of losing valuable and irreplace - able benefits. Adding additional coverage for Policy Innovations to Improve Mental Healthcare Outcomes 115 ▸ Ongoing Challenges:

A Look to the Future of Policy Making in Mental Health and Behavioral Health The Patient Protection and Affordable Care Act (ACA) was signed into law on March 23, 2010 with most major provisions in force by 2014. The bill ended the exclusion of prior medical con - ditions provisions should individuals choose to move jobs and purchase new insurance policies.

The Mental Health Parity Act of 2008 provided for parity between payment of medical services and payment for mental and behavioral health services. The Comprehensive Addiction and Recovery Act of 2016 (CARA) provided for ef - forts to be made to curb the nation’s opioid crisis encompassing prevention, treatment, recovery, law enforcement, criminal justice reform, and overdose reversal. $181 million in funding was provided for each year. As of 2017, proposed (not yet approved) funding is increased. There are several bills recently introduced into Con - gress aimed at improving mental health and/or behavioral health care ( TABLE 6-2), including a bill introduced by Senator Kennedy of Massa - chusetts to provide mental healthcare parity to children covered under CHIP. The Better Care Reconciliation Act (BCRA) was voted down in Congress in July 2017. This Act would have left 22 million Americans uninsured and decreased Medicaid funding by $772 billion (Congressional Budget Office, 2017). The Obama Care Repeal Reconciliation Act (ORRA), which accord - ing to the Congressional Budget Office (2017) would result in 32 million uninsured individu - als and eliminate Medicaid expansion entirely, was also voted down in Congress. As of the writ - ing of this chapter, no further action on health care appears to be contemplated by Congress in light of the recent defeats of proposed changes Home Program (Pratt et al., 2016). In addition to finding financing for mental health and be - havioral health services, more financially ef - ficient ways of delivering these services have been explored. Expanding services tangentially related to mental health is one approach to en - hancing outcomes. Utilizing new technology to deliver services is another. Mental health and behavioral health ser - vices are not always available to individuals liv - ing in remote areas or individuals living in areas designated as suffering from healthcare profes - sional shortages. Various alternative delivery ser - vices to rural populations have been explored in an effort to increase services using modern technology, rather than in-person, face-to-face appointments. One study examined the cost of deliver - ing behavioral health services to rural Native American populations via telecommunica - tions and compared that cost with the travel costs associated with providing equivalent care. “The average per-patient cost of provid - ing behavioral healthcare via telehealth was $138.24 and the average per patient travel cost was $169.76 for physicians and $333.52 for pa - tients” (Horn, Barragan, Fore, & Bonham, 2016, p. 47). Choices concerning the possibilities of reimbursement for types of care or methods of delivery of care are policy choices. Choos - ing telehealth and allowing reimbursement for equipment and underlying technical support so as to expand availability to rural individu - als who might otherwise go without is a pol - icy choice. Choosing to reimburse exercise as treatment helpful to those with chronic men - tal illness who suffer from multiple comor - bidities is a policy choice. Each choice comes with financial ramifications and with the hope that money spent will result ultimately in bet - ter health at lower costs. The ongoing and ever-changing market powers and political waves have brought an ongoing debate to the provision of health care in the United States, particularly aimed at the strengths and mi - nuses of the Affordable Care Act.

116 Chapter 6 Mental and Behavioral Health (continues) TABLE 6-2 2017 Congressional Bills Related to Mental Health and/or Behavioral Health Sciences Citation for Bill Purpose of Bill Status of Bill Civic Impulse. (2017). H.R. 3192— 115th Congress: CHIP Mental Health Parity Act. Retrieved from www .govtrack.us/congress/bills/115 /hr3192 This bill requires Children’s Health Insurance Program (CHIP) plans to cover mental health and substance use disorder services. Financial requirements and treatment limitations applicable to such services shall not differ from those applicable to other medical services under CHIP. Introduced into Congress July 12, 2017. Civic Impulse. (2017). H.R. 2509—115th Congress: Medicare Mental Health Inpatient Equity Act of 2017. Retrieved from www .govtrack.us/congress/bills/115 /hr2509 This bill removes the 190-day lifetime limit on inpatient psychiatric hospital services under Medicare. Introduced into Congress March 16, 2017. Civic Impulse. (2017). H.R. 1575—115th Congress: Addiction Recovery through Family Health Accounts Act. Retrieved from www .govtrack.us/congress/bills/115 /hr1575 To amend the Internal Revenue Code of 1986 to expand to family members with respect to whom treatment for alcohol and drug addiction is treated as a qualified medical expense for purposes of health reimbursement arrangements, health flexible spending arrangements, and health savings accounts. Introduced into Congress March 16, 2017. Civic Impulse. (2017). S. 448—115th Congress: Medicare Mental Health Access Act. Retrieved from www .govtrack.us/congress/bills/115/s448 A bill to amend Title XVIII of the Social Security Act to provide for treatment of clinical psychologists as physicians for purposes of furnishing clinical psychologist services under the Medicare program. Introduced into Congress February 27, 2017. Civic Impulse. (2017). S. 1370—115th Congress: Mental Health in Schools Act of 2017.

Retrieved from www.govtrack.us /congress/bills/115/s1370 A bill to amend the Public Health Service Act to revise and extend projects relating to children and violence to provide access to school- based comprehensive mental health programs Introduced into Congress June 15, 2017. 117 Ongoing Challenges: A Look to the Future of Policy Making in Mental Health and Behavioral Health to the Affordable Care Act. Despite the salvage of the ACA, a recent survey of 11 countries (Australia, Canada, France, Germany, the Neth - erlands, New Zealand, Norway, Sweden, Swit - zerland, the United Kingdom, and the United States) reveals that adults in the U.S. still face significant barriers to affordable access to health care (Osborn, Squires, Doty, Sarnak, & Schnei - der, 2016). U.S. adults reported poorer health with at least two chronic conditions (28%), as well as reporting significant emotional distress (26%) (Osborn et  al., 2016). U.S. adults were more likely to report “that they were ‘always’ or ‘usually’ worrying about having enough money to buy nutritious meals and to pay their rent or mortgage” (Osborn et al., 2016, p. 2). Primary care providers are reported as failing to discuss mental health problems such as depression and anxiety by 34% of adults surveyed. Low-income adults in the U.S. (43%) continue to report bar - riers to health care (Osborn et  al., 2016, p. 6).

The current state of our nation’s health insur - ance scheme is in flux. The Affordable Care Act has been, and is pres - ently being, critiqued for a myriad of perceived weaknesses including cost of premiums and bur - dens allegedly placed on employers. President Trump’s Presidential Executive Order Promot - ing Healthcare Choice and Competition Across the United States (2017) seeks to restructure the healthcare insurance markets and options avail - able both to individuals and employers. At the time of the submission of this chapter, the im - pact of this executive order is unknown. Along with the future of health care, rises and falls ex - ist as well for the future of mental health care and behavioral health challenges.

▸ Summary This chapter provided an overview of the pol - icies that have shaped and continue to shape the provision of mental health and behavioral health care services in the United States. The chapter explored mental health and behav - ioral health resources available on national, state, and local levels throughout the United States. A discussion of policies that support expansion of mental health and behavioral Citation for Bill Purpose of Bill Status of Bill Civic Impulse. (2017). H.R. 2677—115th Congress: Stop Mental Health Stigma in Our Communities Act. Retrieved from www.govtrack .us/congress/bills/115/hr2677 To amend the Public Health Service Act to provide for behavioral and mental health outreach and education strategies to reduce stigma associated with mental health among the Asian American, Native Hawaiian, and Pacific Islander population. Introduced into the House of Representatives May 25, 2017. Civic Impulse. (2017). S. 867—115th Congress: Law Enforcement Mental Health and Wellness Act of 2017. Retrieved from www.govtrack.us /congress/bills/115/s867 To provide support for law enforce - ment agency efforts to protect the mental health and well-being of law enforcement officers, and for other purposes. Passed by the Sen - ate; next passed by the House 5/26/17. TABLE 6-2 2017 Congressional Bills Related to Mental Health and/or Behavioral Health Sciences (continued) 118 Chapter 6 Mental and Behavioral Health discrimination and hate crime legal protection.  American Journal of Public Health , 106 (3), 534–540. Bockting, W. O., Miner, M. H., Romine, R. E., Hamilton, A., & Coleman, E. (2013). Stigma, mental health, and resilience in an online sample of the US transgender population.  American Journal of Public Health , 103 (5), 943–951. Braslow, J. T. (2013). The manufacture of recovery.  Annual Review of Clinical Psychology , 9, 781–809. Center for Alternative Sentencing and Employment Services (CASES). (2017). Manhattan CIRT. Retrieved from https://www.cases.org/manhattan-cirt/ (accessed August 6, 2017). Center for Behavioral Health Statistics and Quality. (2016 ). Key substance use and mental health indicators in the United States: Results from the 2015 National Survey on Drug Use and Health (HHS Publication No. SMA 16-4984, NSDUH Series H-51). Retrieved from http://www.samhsa.gov/data/ Children’s Health Act of 2000. Pub.L. No. 106–310, 114 Stat. 1101.City of New York (2014).  Mayor’s task force on behavioral health and the criminal justice system: Action plan . New York, NY: City of New York. Retrieved from  https://www1.nyc.gov/assets/criminaljustice/downloads/pdfs /annual-report-complete.pdf  Clubhouse International, Inc. (2017). What do clubhouses do? Retrieved from http://clubhouse-intl.org/what-we-do /what-clubhouses-do/ Combating Autism Act of 2006. Pub. L. No. 109-416, 120 Stat. 2821 (2006). Community Counseling & Mediation. (n.d.). Who we are. Retrieved from https://www1.nyc.gov/site/doh/health /health-topics/child-and-adolescent-mental-health -emergency-crisis.page Community Mental Health Act of 1963 (CMHA), Pub. L. No. 88-164 (1963), 77 Stat. 282. Comprehensive Addiction and Recovery Act of 2016. Pub. L. No. 114-498, 130 Stat. 695 (2016). Retrieved from http:// www.cadca.org/comprehensive-addiction-and-recovery -act-cara Crisis Mental Health Services . (2018). Crisis services and mental health . Re trieved from https://www1.nyc.gov /site/doh/health/health-topics/crisis-emergency -services.page Congressional Budget Office (2013, March). Federal grants to state and local governments. Retrieved from https://www .cbo.gov/sites/default/files/113th-congress-2013-2014 /reports/43967federalgrants.pdf Congressional Budget Office (2017, June 26). H.R. 1628, Better Reconciliation Act of 2017. Retrieved from https://www .cbo.gov/publication/52849 Congressional Budget Office (2017, July 19) H.R. 1628, Obamacare Repeal Reconciliation Act of 2017. Retrieved from https://www.cbo.gov/publication/52939 health services to include active participa - tion of consumers was had. Policies aimed at promotion or limitation of mental health and behavioral health options for specific vul - nerable groups were described. The chapter concluded with an overview of the future pos - sibilities of care in the mental health and be - havioral health arenas.

Discussion Questions 1. Discuss the strengths and weaknesses of the mental health systems and services in place across the United States today.  2. Discuss the current state of the opioid crisis in America and evaluate the steps currently underway to deal with the crisis.  3. What steps could be taken to further empower those with mental illness and substance use disorders and their families to improve opportunities for successful integration into society at large?  4. Discuss current legislation, rules and regulations affecting the mental health and health care rights of the LGBT-Q community. What suggestions can be made for improvements to access and range of services?  5. What mental health and behavioral health services are currently offered for our veterans of the Armed Forces? Evaluate the strengths and weaknesses of these offerings. What suggestions could improve care rendered to veterans? References 21st Century Cures Act. Pub. L. No. 114-255 (2016).Alcohol, Drug Abuse, and Mental Health Administration Reorganization Act. Pub. L. No. 102-321 (sec. 1926). Bishop, T. F., Seirup, J. K., Pincus, H. A., & Ross, J. S. (2016). Population of US practicing psychiatrists declined, 2003–13, which may help explain poor access to mental health care.  Health Affairs , 35(7), 1271–1277. Blosnich, J. R., Marsiglio, M. C., Gao, S., Gordon, A. J., Shipherd, J. C., & Kauth, M ... Fine, M. J. (2016). Mental health of transgender veterans in US states with and without 119 References Nguyen, Q. C., Rehkopf, D. H., Schmidt, N. M., & Osypuk, T. L. (2016). Heterogeneous effects of housing vouchers on the mental health of US adolescents.  American Journal of Public Health , 106 (4), 755–762. Obama, Barack (2012, August 31). Executive Order – Improving Access to Mental Health Services for Veterans, Service Members, and Military Families. 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President’s Commission on Mental Health (1977, February 17). Executive Order 11973. Retrieved from http://www .presidency.ucsb.edu/ws/?pid =6643 Rainbow Heights Club (2017). Our mission, our vision . Retrieved from http://www.rainbowheights.org/mission _vision.php Rieckmann, T., Moore, L. A., Croy, C. D., Novins, D. K., & Aarons, G. (2016). A national study of American Indian Davis, J. H., & Cooper, H. (2017, July 26). Trump says transgender people will not be allowed in the military. The New York Times. Retrieved from https://www.nytimes .com/2017/07/26/us/politics/trump-transgender -military.html Don’t Ask, Don’t Tell Repeal Act of 2010. Pub. L. No. 111-321, 124 Stat. 1535 (2010). Drake, R. E., Frey, W., Karakus, M., Salkever, D., Bond, G. R., & Goldman, H. H. (2016). Policy implications of the Mental Health Treatment Study . Psychiatry Services. Retrieved from https://ps.psychiatryonline.org/doi/abs /10.1176/appi.ps.201500336 Flores, A. R., Herman, J. L., Gates, G. J., & Brown, T. 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Behavioral health barometer: United States; Volume 4: Indicators as measured through the 2015 National Survey on Drug Use and Health And National Survey of Substance Abuse Treatment Services. HHS Publication 121 References of school settings with students who do not feel prioritized or valued at school. It also reflects on the ways in which mental illness, self-esteem, and feeling respected interact with a student’s ability to engage. Throughout the school year, I combined skills-based learning objectives (survey development, focus group analysis, facilitation skills, etc.) with confidence and team building activities inspired from my understanding of positive youth development constructs to influence individual and group morale in regards to self-worth and interest in extracurricular activities (Shek, Sun, & Merrick, 2012). The group had several iterations before arriving at the final six students for the project. One goal of the project was to work with students with lived experiences of being failed by the current system—for example, those at risk of dropping out or failing—to inform our collaborative work.

However, the recommendations received from a consulted guidance counselor and teacher did not meet that description. In fact, most candidates were athletes and therefore had a sense of belonging at school. Their sports practice commitments led them to drop the program except for one student, Marissa.* Marissa had to leave eventually but brought in two more friends who brought in others and we formed our current group with students who rarely engage in team sports and do not belong to any other student groups. It was clear that in this group, many of the students struggle with academics and all of them struggle with symptoms of depression, anxiety, and/or bipolar disorder. These are students who are not expected to succeed. Rebecca* reported that a teacher expressed surprise at learning that she was involved in facilitating a focus group and in having electively joined a research team.

Despite the disbelief of teachers and other adults, this group of students consistently attends weekly meetings to engage in collaborative work and does so throughout the summer months as well as other vacations. Their dedication can be attributed to (1) the respectful and positive space we have created together, (2) a desire to be actively engaged in an activity, and (3) the sense of community and social support that mediates negative mental health outcomes. With the positive youth development constructs of promoting bonding, social, and emotional competence in mind, each week CASE STUDY Reality Check: How an Education Justice Project Became More Yael Rosenstock Associate Director Center for Ethnic, Racial, and Religious Understanding – Queens College, City University of New York Background With discussions of the opportunity gap versus the achievement gap and a rallying cry for education justice, the staff at the Center for Ethnic, Racial, and Religious Understanding (CERRU) at Queens College wanted to act. Opportunity gap research goes beyond achievement gap research by not only observing differences, but trying to understand the underlying factors that lead to a student’s success in school, or lack thereof. Factors include socioeconomic status, structural racism, inequitable funding, etc.—issues important to the Center’s mission (Flores, 2007). The CERRU team decided I would reach out to a local urban high school student population in the Northeast to develop a participatory action research (PAR) project to work with teens towards change beginning January 2016. PAR is an epistemology that challenges the general understanding of what it means to be a researcher and how to define the term “expert” (Datta et al., 2015; Langlois, Goudreau, & Lablonde, 2014). PAR acknowledges the importance of knowing a community’s needs in order to develop interventions and programs to address those needs (Kombluh, Ozer, Allen, & Kirshner, 2015). PAR is research for and by the community. The research project was as much a pilot for the facilitator as it was for the student researchers, and all involved discovered that the experience went beyond expectations. The students chose to focus on addressing communication issues between students and their teachers and the perceived social support students receive at their school. However, I, as the facilitator, quickly recognized that self-perception, confidence, and self-esteem were essential precursors for working towards any other goals. This case study reflects on the use of non-standard education techniques used outside 122 Chapter 6 Mental and Behavioral Health CASE STUDIES effects, observations of the group’s development and explicit discussions with the students lends evidence to these claims. Though I have heard the words, “I am worthless” and other phrases of that sort multiple times within our space, and I have seen the students feel dejected, lost, and unmotivated, I have witnessed incredible changes. Before we began the meeting groups, most of the students were not considering college as an option; now they’re considering future pathways towards a successful career, which may or may not include traditional college. While self-doubt is still rampant and depression remains a reality, the students report positive mental health outcomes when we discuss the role PAR has played for them.

Students with presentation fears and social anxiety have presented at public events, volunteered at public events, and invited community members into our space. The students feel respected, important, and valued by me and by one another. Despite the moans and groans heard during the “I am a badass” exercise, the students almost unanimously voted to keep the activity because it reminds them that they are worth celebrating. When an individual is struggling with an activity, the others are happy to remind each other what makes each of them special and what positive actions they have each completed. They now recognize their teachers as independent beings who have their own stories, histories, experiences, and therefore unique points of views, even if they appear flawed from a student perspective. Despite the reputation of some as students uninterested in education and in their own future, they were excited and eager to choose a new topic and begin a second year of research. Their new focus is mental health and understanding the needs of their community, building awareness, addressing stigma, and developing pride and love of oneself as a person who is diagnosed with a mental illness. Our work together demonstrates the importance of addressing mental health needs within educational and noneducational programs in order for students to access their own potential.

The work points to the motivating drive students feel when they are respected and asked to engage in high-level work relevant to their lives as a way to develop both cognitive skills and resiliency.

The importance of building a shared space where students feel supported and safe to address problems that arise at home is necessary, as it is began with the exercise, “I am a badass because. ...” (Shek, Sun, & Merrick, 2012). The activity requires that each student celebrate him- or herself for something positive he or she has done, which was regularly met with audible groans as the students had trouble seeing themselves positively. The team is mostly Latinx and female, both of which are risk factors for low self-esteem, low school performance, weight, involvement in team sports, as well as parenting styles that varied among the group (McClure, Tanski, Kingsbury, Gerrard, & Sargent, 2010). When unable to come up with their own, students would volunteer badass statements for each other; this provided an opportunity to bond while still develop social and emotional competence. Other exercises have equally horrified them in the moments they were presented; however, they speak very positively of these experiences despite the initial stress they caused because of the perceived benefits. These perceived benefits include relationships with one another as well as moments of pride and self-appreciation. The year weaved traditional research methods with exercises practiced for personal and group development. The traditional learning goals addressed the positive youth development constructs of promotion of cognitive competence, development of self-efficacy, and cultivation of self-determination (Shek, Sun, & Merrick, 2012).

Students engaged with work in our space and sometimes on their own to work towards our shared research goals. They were challenged to be creative within the context of research and programming. Towards the end of the project I offered the opportunity to each individual to create their own presentation and lead a conversation on any topic of their choosing. Though this was completely voluntary, each student chose a week and took the opportunity to collect information on his or her own and present to his or her peers.

This is significant for the participants because of their reputation as unmotivated, as well as the general fear the group shared of presenting.

Topics included gender identity, bipolar disorder, gentrification, and many more. The combination of methods and goals worked towards promotion of moral competence, cultivation of resilience, beliefs in the future, development of clear and positive identity, opportunity for prosocial involvement, and recognition for positive behavior (Shek, Sun, & Merrick, 2012). Though not quantifiable in its Case Study 123 CASE STUDIES access to adequate resources. How would you approach, invite, and sustain a group? 4. What about the epistemology of PAR (research by the community for the community) lends itself to addressing the positive youth development constructs? 5. How can PAR be used to counter the negative messages young people receive?

How can it be used to encourage interest and motivation towards future goals that may or may not be consistent with higher education? 6. What would be the most challenging aspects of facilitating a group of youth researchers? Keep in mind that PAR groups should be nonhierarchical and that everyone is valued for the unique expertise they provide to the group. 7. What kind of background and training would be useful for facilitating a group of youth researchers, particularly one that matches the demographics depicted in this case study? References Datta, R., Khyang, U., Prue Khyang, H. K., Prue Kheyang, H. A., Ching Khyang, M., & Chapola, J. (2014). Participatory action research and researcher ’s responsibilities: An experience with an indigenous community. International Journal of Social Research Methodology, 18 (6), 581 –599. doi: 10.1080/13645579.2014.927492 Flores, A. (2007). Examining disparities in mathematics education: Achievement gap or opportunity gap? High School Journal, 91 (1), 29–42. Kombluh, M., Ozer, E., Allen, C., & Kirshner, B. (2015). Youth participatory action research as an approach to sociopolitical development and the new academic standards: Considerations for educators. Urban Review, 47(5), 868–892. doi:10.1007/s11256-015-0337-6 Langlois, S., Goudreau, J., & Lalonde, L. (2014). Scientific rigour and innovations in participatory action research investigating workplace learning in continuing interprofessional education. Journal of Interprofessional Care, 28 (3), 2 26–231. doi:10.3109/13561820.2014.885003 McClure, A., Tanski, S., Kingsbury, J., Gerrard, M., & Sargent, J. (2010). Characteristics associated with Low self-esteem among US adolescents. Academic Pediatrics, 10 (4), 238–244. Shek, D. T., Sun, R. C., & Merrick, J. (2012). Positive youth development constructs: Conceptual review and application. Scientific World Journal, 2012 (2012), 152923. doi:10.1100/2012/152923 difficult for adults to access information about the personal lives of students that can highly affect their school performance and mental health. Over the year, three of the six students appeared in my office during a time of need or crises because they wanted adult support and felt it was the only place to go at the time. It was an important development for them to seek assistance from an adult figure. A recommendation for educators and health practitioners is to create more programs that develop spaces where students are challenged, respected, heard, and supported as a way to encourage academic success, as well as positive mental health development. PAR projects are particularly apt for this endeavor because it prioritizes those with lived experiences as experts in the development of research projects and interventions, thereby creating opportunities for leadership and confidence development.

The challenges for practitioners and program developers are time, funding, and space. Our group continues to meet weekly with the support of the CERRU team to have some of my hours dedicated to this project. As part of a college, we have access to free space and have otherwise maintained very low costs. However, without existing staff dedicating hours and readily available space, this could be significantly more costly. Training is required to develop PAR projects and facilitate teen groups with an inclusive atmosphere. Lastly, this project is difficult to facilitate with large groups.

Attention should be focused on (1) students struggling with mental health needs where there are lacking resources and (2) students with difficulty navigating the current school system to maximize effects.

* Student names have been changed for purposes of this case study.

Case Study Questions 1. Why were athletes recommended for the group when persons at the high school were asked to recommend students at risk of failing or struggling with the school system? 2. How could the teacher’s statement of surprise towards Rebecca influence her self-perception? 3. Consider ways to engage routinely marginalized youth populations that are neglected by formal structures and lack 124 Chapter 6 Mental and Behavioral Health CASE STUDIES ask about transgender youth. The prevalence is thought to be 0.25% to 1% of the U.S. population (Blad, 2017). Many in society have difficulty differentiating the terms related to sex and sexuality. Biological sex is the sex assigned at birth; it is on a continuum from male to intersex to female ( The Trevor Project, n.d.). Gender identity is part of one’s self-concept. It is how one feels inside and only the person can describe it; it is not a choice. It describes whether the person feels like a male or female, regardless of their biological sex. Sexual orientation is defined as the object of one’s sexual attraction: whether one is attracted to someone of their same biological sex, the opposite sex, or both. These are two very different groups; the laws are written only for those with a gender identity different from their assigned birth gender, yet the rationales for these laws often focus on sexual orientation. Title IX of the Education Amendments of 1972 prohibits discrimination based on sex in any educational program or activity receiving federal financial assistance. The issue in the courts is whether this can be interpreted as applying to gender identity. Does the law protect against discrimination and harassment on the bases of failure to conform to gender stereotypes?

Case Analysis Consider a 16-year-old transgender female named Jesse. She was born a male but became aware that her gender identity was that of a female when she was 6. Since the age of 8 she has assumed a female identity and lives as a female; she started on hormone therapy at age 13 but has not yet had surgical intervention. What are the issues she faces on a daily basis in the school setting? 1. What are the fears the public has regarding transgender children? The voiced fears are (a) that my child will see a penis in the bathroom and (b) that a predator will molest my child.

a. There are NO reports of either of these events happening involving the hundreds of transgender children in schools and public buildings (i.e., female bathrooms have stalls and therefore no one sees another while he or she is on the toilet). CASE STUDY Examining the Policy Issues for Transgender Teens: Bathrooms, Bullying, and Mental Health Janice Selekman Professor, University of Delaware – Newark What Is the Impact of State and National Policies on Transgender Youth?

There are no national statistics on the prevalence of transgender youth, yet the issue has become so significant in the schools that the U.S.

Department of Education (DOE, 2016) issued a monograph on transgender students that provided civil rights protections to these youth.

These included allowing transgender students to participate in activities and to use the bathroom and locker rooms that matched their gender identity rather than their birth gender.

Eleven states filed lawsuits and President Trump withdrew and rescinded the guidelines in March 2017, saying that the states can decide but that it was not the job of the federal government.

Laws are meant to protect the public, yet who is protecting the welfare of young people who are part of the sexual minority? It appears that the lack of protection is based on a misunderstanding of terms used to describe youth who are transgender, the impact of religious voices, the politically conservative leaning of some legislators and district administrators, and unfounded fears.

Yet who is considering the best interests of the child?

Background The first national estimate of students in grades 9 to 12 who are gay, lesbian, and bisexual (LGB) revealed that 88.5% of youth identify as heterosexual, 2% as gay or lesbian, 6% as bisexual, and 3.2% are not sure of their sexual identity (Centers for Disease Control and Prevention, 2016). This means that there are approximately two students in every classroom in the country who are LGB. This study did not Case Study 125 CASE STUDIES their psychological well-being. Note the following: 71% of transgender youth hear peers make negative remarks about their gender expression; 57% hear teachers make negative remarks. 82% are verbally harassed because of their gender expression. 38% of transgender youth report physical attacks based on their gender expression (American Psychological Association, 2015). More than one anti-transgender murder is reported every month in the U.S. (Human Rights Campaign, 2017). b. Schools have the responsibility to protect all students from bullying and harassment and provide a safe environment in which to learn, including for transgender students. c. The federal government plays a role in ensuring that all children are able to attend school free of discrimination. 4. How do laws and beliefs that fail to protect and support transgender students affect their mental health?

a. Removing protections may result in children being afraid to go to school. b. Those who do not believe sexual identity is a healthy choice question the mental health of the transgender individual; the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) includes the diagnosis of gender dysphoria. This means that the outcome for the teen is a function of who is defining the issue. c. While most conservative/orthodox religious groups teach that homosexuality is wrong and are unaccepting of those who participate in that activity, almost all religions advocate love and compassion for others. Nonsupport and nonacceptance can result in poor self-esteem and feelings of lack of support and safety and exclusion from the home, community, and religious institution. d. Gender nonconforming youth are more at risk for self-harm, suicide attempts, b. There is the fear of sexual predators masquerading as transgender women, yet there is no similar concern voiced regarding fear of homosexual activity (i.e., there are multiple reports of homosexual activity and sexual abuse in male-only facilities, including religious settings, yet these facilities have never been the focus of laws; there are no reports of the transgender individual as the predator, although he or she is often the victim). c. Many institutions have gone to single occupant, either-gender bathrooms (i.e., the bathroom in the office of the school nurse or teacher’s lounge is often used by transgender students for toileting and locker room needs; this separates students from their peers, but it does provide safety and privacy; and the Rehabilitation Act speaks of reasonable accommodations for students with chronic conditions). 2. So what are reasonable accommodations for transgender students and do they qualify under this law as having a disability? The 2016 DOE document stated that denying transgender students the right to use the bathroom of their choice violated federal prohibitions against sex discrimination.

a. Opponents say the accommodations violate student privacy and traditional values. (Note: In addition to activities where students visit other schools, “bathroom and locker room laws” restricting bathrooms to one’s assigned birth gender would also affect convention-goers and stadium restroom policies.) b. How would those policing these laws know if someone was transgender or not, especially since some states allow the birth certificate to be changed (although usually not until gender reassignment surgery has occurred)? 3. What are the laws protecting transgender students from violence or bullying?

a. There is concern that forcing students to use a bathroom that does not coincide with their gender identity will put them in physical danger (from bullying and harassment) as well as negatively affect 126 Chapter 6 Mental and Behavioral Health CASE STUDIES who are nonconforming in general or facing problems with their own gender identity? 5. If Jesse is hospitalized and no private rooms exist, what goes into determining Jesse’s room assignment? 6. According to the definition of disability as per the Americans with Disabilities Act, is being transgender a disability? Is it a mental health disorder? References American Psychological Association. (2015). Supporting transgender and gender diverse students in schools: Key recommendations for school administrators. Washington, DC: APA. Blad, E. (2017, March 7). How many transgender children are there? Education Week, 36 (24), 6. Retrieved from http://www.edweek.org/ew/articles/2017/03/08how -many-transgender-children-are-there.html Centers for Disease Control and Prevention. (2016). Sexual identity, sex of sexual contacts, and health-related behaviors among students in grades 9–12 – United States and Selected Sites, 2015. Morbidity and Mortality Weekly Report, 65 (9), 1–202. Human Rights Campaign. (2017). Violence against the transgender community in 2017. Retrieved from http://www.hrc.org/resources/violence-against-the-transgender-community-in-2017 (accessed August 25, 2017). Morgan, S., & Stokes, L. (2017). Overcoming marginalization in the transgender community. American Nurse Today, 12(5), 34–35. Olson, K., Durwood, L., DeMeules, M., & McLaughlin, K. (2015). Mental health of transgender children who are supported in their identities. Pediatrics, 137 (3), e20153223. The Trevor Project website. (n.d.). Retrieved from http://www .thetrevorproject.org U.S. Department of Education, Office of Elementary and Secondary Education, Office of Safe and Health Students. (2016). Examples of policies and emerging practices for supporting transgender students. Washington, DC: U.S. Department of Education. mood disorders, suicidality, substance use, and low school performance. They face discrimination and exclusion. Laws do matter and play a role in affecting these teens’ lives. e. Children who have socially transitioned to their gender identity and who feel supported by their family and community showed no increase in depression compared to the general population (Olson, Durwood, DeMeules, & McLaughlin, 2015). Conclusion Policies that affect children who are transgender must consider their safety, their psychological well-being, and their educational success. These children need to have their civil rights upheld.

Adults must act as protective agents committed to the safety and well-being of all youth. The American Nurses Association (ANA) promotes the inherent dignity, worth, unique attributes, and human rights of all individuals. The ANA Code of Ethics promotes the role of nurses as advocates for social justice and human rights, especially for those whose rights are more easily violated (Morgan & Stokes, 2017).

Case Study Questions 1. How can nurses play a role in educating others about the differences in gender identity and sexual orientation as they relate to the health needs of the teen or youth? 2. What areas of primary prevention might be paramount in working with Jesse in her school situations? 3. What organizations might be appropriate to contact or learn more about the lesbian, gay, bisexual, transgender, or queer (LGBT-Q) community? 4. What role does nursing play in advocating on behalf of the public to protect teens and youth Case Study 127 CASE STUDIES & LeGris, 2015). The high frequency of violence in psychiatry shows this to be a serious public health concern. It is the healthcare provider’s responsibility to support the right of patients to be treated with respect and dignity and allow the patient autonomy as guaranteed by case law and required by professional ethics. Yet it is also the provider’s responsibility to provide safety to other patients, staff, and self. This is also a legal mandate.

Balancing these responsibilities can present unique challenges. Approaches to this problem must consider the needs of both patients and staff.

Policies should ensure that all human and civil rights of the patient are protected and, at the same time, that the safety of patients, staff, and others is maintained.

Stakeholders Over the last 50 years, great advances have been made in the field of psychiatry, which have resulted in far more humane treatment of patients.

Increased understanding of psychodynamics and development of increasingly sophisticated pharmacotherapy have resulted in treatment and therapeutic interventions that can be effective in improving the emotional, social, cognitive, CASE STUDY Workplace Violence: Safety of Patients and Staff in Acute Care Psychiatry Lois B. Moylan Problem Violence in the workplace has become a widespread problem in the general population.

The National Institute for Occupational Safety and Health (NIOSH) identifies four types of workplace violence: criminal intent, customer/client violence, worker on worker violence, and personal relationship violence (Centers for Disease Control, 2016) (see TABLE 6-3). The healthcare workplace, due to the high levels of stress, experiences frequent incidents of workplace violence. Of all the specialty areas in health care, acute care psychiatry has the highest number of aggressive incidents by patients on staff ( Type II classification), which result in assault and injury (Stevenson, Jack, O’Mara, TABLE 6-3 CDC Classifications of Workplace Violence Type I: Criminal intent In this kind of violent incident, the perpetrator has no legitimate relationship to the business or its employee(s). Rather, the violence is incidental to another crime, such as robbery, shoplifting, or trespassing.

Acts of terrorism also fall into this category. Type II: Customer/client When the violent person has a legitimate relationship with the business—for example, the person is a customer, client, patient, student, or inmate—and becomes violent while being served by the business, violence falls into this category. Type III: Worker on worker The perpetrator of Type III violence is an employee or past employee of the business who attacks or threatens other employee(s) or past employee(s) in the workplace. Type IV: Personal relationship The perpetrator usually does not have a relationship with the business but has a personal relationship with the intended victim. Data from Centers for Disease Control and Prevention. (2013). The National Institute for Occupational Safety and Health (NIOSH): Workplace violence prevention for nurses. Retrieved from https://wwwn.cdc.gov/wpvhc/Course.aspx/Slide/Unit1_5 128 Chapter 6 Mental and Behavioral Health CASE STUDIES determination distribution of resources and fair treatment for individuals and society). There is no question or disagreement within nursing or among nurses that those with mental illness are deserving of ethical treatment. However, how this is carried out has, at times, become controversial, especially in regard to the use of restraints in the psychiatric setting.

Terms and Position Statements The term “restraint,” when used in relation to management of a psychiatric patient, may refer to several types of restrictive measures taken to control aggressive behavior. The most common types of restraint are: (a) mechanical restraint, which is the use of a device to restrict movement; (b) manual restraint, which is the therapeutic holding of a patient by staff; and (c) chemical restraint, which is the use of pharmacological agents to immobilize the patient. There are serious reasons for the controversy surrounding restraint use. In addition to depriving patients of the rights discussed above, accounts of patient death and injury during the retraining process are well documented (Berzlanovich, Schöpfer, & Keil, 2012; Rakhmatullina, Taub, & Jacob 2013). Nurses have also been reported to suffer injury during a restraining intervention. A study by Moyo and Robinson (2012) showed that while 14 female nurses out of a sample of 32 nurses who restrained patients were injured during restraint, a slight majority of these injuries resulted from assault by the patient rather than by the mechanics of the restraint. Serious injuries are often experienced by nurses from patients who are aggressive and not restrained (Moylan & Cullinan, 2011). In 2000, the ANA published a formal position paper titled, “Reduction of Restraint and Seclusion in Health Care Settings,” which was revised in 2012.

That paper discusses the need to use physically restrictive measures only as a last resort when no other intervention would provide safety.

Specifically addressing the psychiatric setting, the American Psychiatric Nurses Association (APNA) published “APNA Position on the Use of Seclusion and Restraint” in 2000; a revised version was produced in 2014, which calls for the ultimate elimination of restraints. These papers addressed many areas of concern surrounding the use of seclusion and restraint in relation to the issue of patients’ rights. Both documents mandate that use and behavioral function of patients. Along with the scientific advances of this period, society has become more concerned with the rights of psychiatric patients. In the United States, multiple court cases during the last 50 years have established the right of psychiatric patients to refuse treatment and medication and to require informed consent for treatment (Simon & Shuman, 2007). Among the rights of psychiatric patients found in the aforementioned legal cases were the right to autonomy, safety, and humane treatment.

However, court cases also found the right to autonomy and freedom may be suspended if the patients become an imminent danger to themselves or other (Simon & Shuman, 2007). Nurses have the duty to provide safety when working in the psychiatric setting. Balancing the rights of the patient with the duty of maintaining safety can, at times, seem to conflict when seriously aggressive behavior erupts suddenly. Nurses can be charged with negligence if they fail to control the patient and injury occurs, and they can be charged with battery if a patient believes that restraint was unjustly used (Simon & Shuman, 2007). The discussion below attempts to address the issues involved in providing quality therapeutic care for the patient while also protecting the safety of the care givers and others in acute care psychiatry.

Public Policy Organizations such as the National Alliance on Mental Illness (NAMI) have worked to shape a national public policy for people with mental illness that recognizes and ensures that patients’ rights are maintained and that patients be treated with dignity and respect. Throughout its existence, the profession of nursing has also actively engaged in policy creation that promulgated the need to protect the rights of psychiatric patients. The American Nurses Association (ANA) has a long history of recognizing the rights of patients. In the ANA Code of Ethics , the 1968 revision included recognition of specific human rights such as the right of all patients to be treated with dignity and their right to privacy. The current revision of the ANA Code of Ethics (2015a) specifically enumerates responsibilities of nurses in providing autonomy (respect for self-determination), beneficence (moral requirement to promote good), non-malfeasance (do no harm), stewardship (preserve your own being), and justice (fair and equitable Case Study 129 CASE STUDIES institutionalization and restraints) under any and all circumstances” (Levin, 2014). This presents a situation where confusion and ambiguity are fostered. The written official document of the UN states information that is incongruent with statements Mendez made in a subsequent letter.

This is an example of the conflicting information about restraint use being communicated to nurses in the literature, by professional organizations, and by the institution in which they are employed. Unfortunately, as restraint use has decreased since the movement toward restraint reduction/ elimination began, some authors report that assault and injury of mental healthcare workers has increased (Liberman, 2006; Paterson & Duxbury, 2007). In a study done by Moylan and Cullinan (2011) in a sample of 110 nurses from 5 institutions, 80% of the nurses were assaulted, 65% had been injured, and 26% had been seriously injured. Injuries included fractures, eye injuries, orthopedic injuries, and permanent disabilities.

Psychosocial and emotional responses to the assaults included flashbacks; nightmares; feelings of guilt and shame; feeling blamed by managers and/or colleagues; generalized feelings of fear, anxiety, anger, and hyper-vigilance; and fear when subsequently exposed to aggressive situations.

The findings of this study were congruent with those of multiple other studies related to patient assault of nurses in acute care psychiatry. The topic of dealing with patient aggression in the psychiatric area is surrounded by controversy.

Some nurses report feeling pressured by administration or the organizational culture to avoid the use of restraints in all circumstances, and some of these nurses also feel pressured to not report assault if it does occur ( Moylan, McManus, Cullinan, & Persico, 2016 ). This is a serious consideration in developing policies in relation to management of the aggressive patient. The literature reports that every restraint episode is a treatment failure (Jacob et al., 2016).

This is a view commonly expressed at conferences sponsored by psychiatric groups of interest and professional organizations. However, it seems that situations exist where this might not always be the case. For example, when a patient who is exhibiting acute steroid-induced psychosis is newly admitted to a unit, behavior is often totally out of control.

The patient may be extremely violent as well as have above normal strength related to the drug. of restrictive measures can only be justified when no other less restrictive means can prevent harm to self or others. Therefore, all other supportive therapeutic approaches should be tried prior to secluding or restraining a patient. The papers discuss the need for proper training of staff in the manner of secluding or restraining a patient, and the monitoring and care of the patient to maintain safety. Additionally, when a patient requires restrictive measures, care should also be taken to support the patient’s dignity, privacy, and, if possible, some degree of autonomy. Therefore, attention should be paid to the psychosocial and emotional needs of the patient during such a stressful time (Moylan, 2009a). Additionally, New York State has very recently updated the guidelines for use of restraint and seclusion (New York Office of Mental Health, 2017).

Conflicting Viewpoints The advance toward more humane treatment and recognition of human rights of psychiatric patients has resulted in a movement toward “zero restraint” over the past two decades. The nonprofit advocacy group Mental Health America states, “as a matter of fundamental policy, Mental Health America (MHA) urges abolition of the use of seclusion and restraints.” The movement toward “zero restraint” is not only occurring in the United States, but has been recognized by law and policy in many industrialized countries. A report produced by the United Nations (UN) in 2013, “ Torture in Healthcare Settings,” called for “an absolute ban on all forced and nonconsensual medical interventions against persons with disabilities.

Included are the nonconsensual administration of psychosurgery, electroshock and mind-altering drugs such as neuroleptics, the use of restraint and solitary confinement, for both long- and short-term application” (cited in Levin, 2014, p.1). It also spoke against any involuntary hospitalization of the mentally ill. This document caused an outpouring of responses from international professional groups that believed the policy was unwise and dangerous. The report’s author, United Nations Human Rights Council Special Rapporteur Juan Mendez, J.D., responding in a letter to the leaders of the American Psychiatric Association and the World Psychiatric Association ( WPA) reversed himself, stating “I did not mean to propose an absolute ban on nonconsensual interventions (including 130 Chapter 6 Mental and Behavioral Health CASE STUDIES violence. APNA also identifies the need for advocacy by professional nursing organizations. In developing policies related to decreasing violence in the acute psychiatric setting, the needs of patients and staff must be considered. General responsibilities of the individual nurse include advocating for a culture of safety; participation in creating, supporting, and attending violence prevention programs intervention if violence occurs; and reporting of violent incidents.

Responsibilities specific to the psychiatric area also include knowledge of therapeutic interaction, expertise in de-escalation techniques, use of the least intrusive approaches necessary to provide safety, and knowledge of applicable law. Responsibilities of the employer or healthcare organization are many and complex. Creation of a safe environment is a requirement that, specifically in psychiatry, entails attention to furnishings, eating utensils, cords on drapes, etc., which all may be used as weaponry. Currently, some hospitals are providing sophisticated personal alarm systems that monitor the location of all staff and provide the staff the ability to call for help in a high-risk or violent situation. In acute care psychiatry, the requirement for comprehensive workplace violence prevention programs includes specific content related to behavior control of the aggressive patient including safe procedures for secluding and restraining in situations of imminent danger (see TABLE 6-4 for description of a comprehensive program developed for the State of Connecticut Department of Mental Health and Addiction Services [DMHAS]). All staff interacting with patients should be trained in therapeutic communication skills, identification of signs of escalating aggression, supportive de-escalation techniques, environmental assessment, and self-protective behaviors congruent with legal and ethical standards (Moylan, 2012).

Education and training should be based on evidence. Attendance at these programs must be ongoing and staff needs to be evaluated in their mastery of the content. There must also be a formal process for mandatory reporting of violent incidents and the policy needs to include a process of follow-up support for both the secluded/restrained patient and the victim of the assault. Reporting needs to ensure freedom from retaliation for reporting. A patient in this condition is unable to respond to any supportive therapeutic approach. Treatment of this patient cannot even commence until safety precautions are taken and, in this case, mechanical restraint is the only option. Another negative result of considering every restraint episode a treatment failure is that blame for making this clinical decision is often ascribed to the nurse. Although the cause may be medication insufficiency, or change in the patient’s cognitive function such as increasing paranoia or command hallucinations, the nurse’s clinical judgment in calling for restraint is often questioned. Yet, if an assault event occurs, the nurse is often blamed (Lanza, Zeiss, & Rierdan, 2006; Moylan, 2009b; Moylan & Cullinan 2011) and can be held legally responsible (Simon & Shuman, 2007). Assault and injury in the psychiatric setting is a critical situation affecting staff and other patients.

This occurrence of Type 2 workplace violence is prevalent in the United States and worldwide and is a major public health concern. The issue of violence directed at healthcare workers is a universal problem. Studies have been done in Japan (Inoue, Tsukano, Muraoka, Kaneko, & Okamura, 2006), South Africa (Bimenyimana, Poggenpoel, Myburgh, & van Niekerk, 2009), Australia ( Ward, 2013), New Zealand (Baby, Glue, & Carlyle, 2014), Israel (Yarovitsky & Tabak, 2009), the United Kingdom, and throughout Europe (Duxbury, Hahn, Needham, & Pulsford, 2008; Bak, Zoffmann, Sestoft, Almvik, & Brandt-Christensen, 2014) that identify the alarming rate of violence against healthcare workers. Chief among these workers are nurses, who are the most frequently assaulted (Lanza, Zeiss, & Rierdan, 2006; Moylan & Cullinan, 2011).

Prevention Policies in Psychiatric Settings The American Nurses Association (ANA, 2015b), New York State Nurses Association (NYSNA, 2011), and the American Psychiatric Nurses Association (APNA, 2014) have official policy statements related to workplace violence. The Centers for Disease Control and Prevention (CDC, 2016 ) offers an online course in preventing workplace violence specifically for nurses. The position statements of the professional organizations and the CDC all recognize the responsibilities of individual nurses and of the organization or employer in preventing Case Study 131 CASE STUDIES TABLE 6-4 The Collaborative Safety Strategies Annual Inpatient Review Training Program Objectives 1. Create and maintain safe and therapeutic environments of care that are grounded in understanding the underlying causes of anger and related dangerous and violent behavior. 2. Use risk management strategies to prevent dangerous behavior from escalating to violence.

3. Use verbal and nonverbal communication with co-workers and patients in nonemergency and emergency situations to reduce the risks to staff, patients, and others that are associated with dangerous and violent behavior. 4. Use a variety of safety strategies in escalating and crisis situations to reduce the risk of physically, medically, and emotionally traumatizing effects resulting from dangerous and violent behavior and the use of restraint and seclusion. 5. Correctly use all of the physical techniques in emergency situations and, should they fail to be executed correctly, take immediate corrective action to reduce the rate and severity of injuries to staff, patients, and others. 6. Use mechanical restraints and seclusion per Department of Mental Health and Addiction Services (DMHAS) Restraint and Seclusion Policy and manufacturer’s instructions to prevent use-related physical injury or death. Modules Module One:

Introduction and Overview The objectives and completion requirements are reviewed. A contextual framework is provided that addresses workplace violence and national injury rates for staff as well as DMHAS data regarding the use of restraints and seclusion. Module Two:

Creating Safe and Therapeutic Environments Staff learns how to create and maintain safe and therapeutic environments of care that are grounded in understanding the underlying causes of anger and related dangerous and violent behavior. Two integrated models for understanding violence—the Cycle of Dangerous Behavior and Phases of a Crisis—are reviewed. Module Three:

Physical Techniques (Protective Skills) Physical skills to protect against being grabbed (e.g., hair, wrists), strikes, and chokes are taught using physical demonstration. Staff practices the skills and must provide an accurate return demonstration. Module Four: Risk Management Staff learns how to identify the major clinical, situational, and environmental risk factors that increase the risk for violence, with a focus on triggering situations and situational awareness. Risk and protective factors are addressed and serve to inform critical thinking and decision making to determine interventions that have the greatest potential to succeed. The DMHAS policy and philosophy for preventing and managing dangerous behavior are reviewed.

The MAPAT (Moylan Assessment of Progressive Aggression Tool [Moylan, 2009b]) is used at the end of the CSS-IR Risk Assessment module. This module teaches staff how to assess the risks of danger with a focus on situational risk assessment. It is played in its entirety and is followed by a facilitated discussion with key questions. 132 Chapter 6 Mental and Behavioral Health CASE STUDIES It is imperative that organizations encourage a culture where, when the decision to restrain is made, the clinical judgment of the nurse is supported and respected.

Conclusion Acute care psychiatry is an area of extremely high risk for workplace violence. In an effort to meet the needs of both patients and healthcare providers, rigorous intensive education and training related to compassionate therapeutic approaches to the patient who is demonstrating behaviors of escalating aggression are needed.

The goal of a restraint-free environment is an ideal worth pursuing but it may not be realistic in all situations, considering the nature of acute care psychiatry. In situations where patients become an imminent danger to themselves or others, restraint may be the only safe option. When a decision to restrain is made by the nurse, who has the legal responsibility to maintain safety, this decision should be supported by the administration and the organization. In this way, safe, compassionate care can be provided to a vulnerable patient population without compromising the safety of patients, nurses, and other healthcare providers.

Case Study Q uestions 1. In a nurse –patient relationship where the nurse has a fiduciary responsibility to the patient, does the patient’ s right to protection from harm supersede that of the nurse ’s right to remain free from harm? 2. How can the ANA Code of Ethics for Nurses with Interpretive Statements be applied to the issue of violence in psychiatry where both the rights of the patient and nurse are addressed? 3. Is a patient’ s right to autonomy absolute? 4. In psychiatry, can ethical conflict occur in balancing a patient ’s right to autonomy and their right to beneficence? Modules Module Five:

Strategies for Enhancing Safety and Interrupting the Cycle The focus of this module is on early intervention. Staff learns the key elements of nonemergency and emergency planning for patients at risk for violent behavior and that preplanning is essential. They learn an efficient and effective way to communicate in emerging behavioral emergencies. Module Six:

Managing Code Involving Restraints (Physical and Mechanical) and Seclusion The focus of this module is on managing an emergency code using a variety of physically restrictive interventions (escorts, assists, and takedowns) and seclusion along the continuum of least to most restrictive.

Since most injuries occur during the process of containing violent behavior, there is a major focus on using the team approach during physical interventions and the roles of the both the team leader and members in preventing the rate and severity of injuries. Restraint and seclusion application and discontinuation of mechanical restraints is practiced with a focus on their risks and how to manage them using the A-E assessment. Module Seven:

Safety Strategies for Escalating and Crisis Situations The focus of this module is on critical thinking and decision-making skills in escalating and crisis situations to reduce the risk of physically, medically, and emotionally traumatizing effects resulting from dangerous and violent behavior and the use of restraints and seclusion. Data from Ciarlo, S. and Moylan, L. (2013). Integration of the Audio-Visual Moylan Assessment of Progressive Aggression Tool(MAPAT) in a U. S. A. State-wide Training Program of Mental Health Workers. Paper presented at The 8th European Congress on Violence in Clinical Psychiatry October 23-26th, 2013. Ghent, Belgium. Case Study 133 CASE STUDIES References American Nurses Association. (ANA) (2012 ). Reduction of restraint and seclusion in health care Settings. Silver Spring, MD: Author. American Nurses Association. (2015a). Code of ethics for nurses with interpretive statements. Silver Spring, MD: Author. American Nurses Association. (2015, September 2). ’Zero tolerance’ for workplace violence, bullying . Position statement. Retrieved from http://www.nursingworld .org (accessed July 10, 2017). American Psychiatric Nurses Association (APNA) (2014). APNA position on the use of seclusion and restraint. Falls Church, VA: Author. Baby, M., Glue, P., & Carlyle, D. (2014). “Violence is not part of our job”: A thematic analysis of psychiatric mental health nurses’ experiences of patient assaults from a New Zealand perspective. Issues in Mental Health Nursing , 28(11), 647–655. doi:10.3109/01612840.2014.892552 Bak, J., Zoffmann, V., Sestoft, D., Almvik, R., & Brandt-Christensen, M. (2014). Mechanical restraint in psychiatry: Preventive factors in theory and practice. A Danish-Norwegian Association study. Perspectives in Psychiatric Care , 50(3), 155–166. doi:10.1111/ppc.12036 Berzlanovich, A. M., Schöpfer, J., & Keil, W. (2012). Deaths due to physical restraint. Deutsches Ärzteblatt International, 109 (3), 27. Bimenyimana, E., Poggenpoel, M., Myburgh, C., & van Niekerk, V. (2009). The lived experience by psychiatric nurses of aggression and violence from patients in a Gauteng psychiatric institution. Curationis , 32, 4–13. Centers for Disease Control, National Institute for Occupational Safety and Health (NIOSH). (2016). Workplace violence prevention for nurses course. Retrieved from https://www.cdc.gov/niosh/topics/violence/training_nurses.html Duxbury, J., Hahn, S., Needham, I., & Pulsford, D. (2008). The management of aggression and violence attitude scale (MAVAS): A cross-national study. Journal of Advanced Nursing , 62, 596–606. Inoue, M., Tsukano, K., Muraoka, M., Kaneko, F., & Okamura, H. (2006). Psychological impact of verbal abuse and violence by patients on nurses working in psychiatric departments. Psychiatry & Clinical Neurosciences , 60(1), 29–36. doi:10.1111/j.1440-1819.2006.01457.x Jacob, T., Sahu, G., Frankel, V., Homel, P., Berman, B., & McAfee, S. (2016). Patterns of restraint utilization in a community hospital’s psychiatric inpatient units. The Psychiatric Quarterly, 87 (1), 31–48. doi:10.1007/s11126-015-9353-7 Lanza, M., Zeiss, R., & Rierdan, J. (2006). Violence against psychiatric nurses: Sensitive research as science and intervention. Contemporary Nurse , 21, 71–82. Levin, A. (2014, April 25). UN report says common psychiatric practices amount to ‘torture.’ Psychiatric News . Retrieved from http://wwsw.PsychiatricNew spsychiatryonline psychnews.psychiatryonline.org/doi/10.1176/appi .pn.2014.5a11 (accessed July 10, 2017). Liberman, P. L. (2006). Elimination of seclusion and restraint: A reasonable goal? Psychiatric Services 57 (4), 576. Mental Health America. (2015 ). Position statement 24: Seclusion and restraints. Retrieved from www.mentalhealthamerica .net/positions/seclusion-restraints Moylan, L. (2009a). Physical restraint in acute care psychiatry: A humanistic and realistic nursing approach. Journal of Psychosocial Nursing & Mental Health Services , 47(3), 41–47. Moylan, L. (2009b). Construction of an instrument to evaluate nurses’ decision making in relation to the use of restraint in acute care psychiatry. Issues in Mental Health Nursing , 30(11), 712–717. Moylan, L. B. (2012). Valuing the patient, valuing the caregiver: Effective approaches to the anxious, agitated or aggressive patient. In L. Berhard (Ed.), Advances in medicine and biology : Volume 57. Hauppauge, NY: Nova Science Publishers. Moylan, L. B., & Cullinan, M. B. (2011). Frequency of assault and severity of injury of psychiatric nurses in relation to the nurses’ decision to restrain. Journal of Psychiatric & Mental Health Nursing , 18(6), 526–534. Moylan, L. B., McManus, M., Cullinan, M., & Persico, L. (2016). Need for specialized support services for nurse victims of physical assault by psychiatric patients. Issues in Mental Health Nursing , 37(7), 446–450. Moyo, N., & Robinson, P. (2012). The safety of nurses during the restraining of aggressive patients in an acute psychiatric unit. Australian Journal of Advanced Nursing , 29(3), 5–13. New York Office of Mental Health. (2017, February 8) Implementation guidelines 14 NYCRR S5246.4: Restraint and seclusion. Retrieved from https://www.omh.ny.gov /omhweb/guidance/implementation-guidelines.pdf New York State Nurses Association. (2011). Position statement on workplace violence. Retrieved from www.nysna.org /position-statement-workplace-violence (accessed July 10, 2017). Paterson, B., & Duxbury, J. (2007). Restraint and the question of validity. Nursing Ethics , 14, 535–545. Rakhmatullina, M., Taub, A., & Jacob, T. (2013). Morbidity and mortality associated with the utilization of restraints. Psychiatric Quarterly, 1 , 14. Simon, R. I., & Shuman, D. W. (2007). Clinical manual of psychiatry and law . Washington, DC: American Psychiatric Publishing. Stevenson, K. N., Jack, S. M., O’Mara, L., & LeGris, J. (2015). Registered nurses’ experiences of patient violence on acute care psychiatric inpatient units: An interpretive descriptive study. BMC Nursing, 14 (1), 1–13. doi:1 0.1186 /s12912-015-0079-5 Ward, L. (2013). Ready, aim fire! Mental health nurses under siege in acute inpatient facilities. Issues in Mental Health Nursing, 34 (4), 281–287. Yarovitsky, Y., & Tabak, N. (2009). Patient violence toward nursing staff in closed psychiatric wards: Its long term effect on staff ’s mental state and behavior. Medicine and Law, 28 , 705–724. 134 Chapter 6 Mental and Behavioral Health 135 © Anthony Krikorian/Shutterstock SECTION 3 Affordable Care Act:

From Enactment to Sustainability CHAPTER 7 Affordable Care Act (ACA) Reframed and Uncertain CHAPTER 8 Healthcare Quality © Anthony Krikorian/Shutterstock Affordable Care Act (ACA) Reframed and Uncertain (Excerpted from the 2018 Annual Health Reform Update by Wilensky and Teitelbaum)* OVERVIEW The Patient Protection and Affordable Care Act (generally referred to as the Affordable Care Act, or ACA) is the most monumental piece of U.S. federal health policymaking in nearly 50 years. It reorders not only many aspects of the health insurance and healthcare delivery systems, but also long-standing relationships that underpin those systems. Implementation of the ACA is an ongoing, dynamic process for the federal government, states, employers, insurers, providers, patients, and others. In addition, there have been and, no doubt, will continue to be state and federal court decisions across the country that will alter the trajectory of the law and its implementation, assuming it is not repealed entirely. The future of the ACA was made even more uncertain by the monumental election cycle in 2016. Unexpectedly, Donald Trump was elected president in November of that year, and the Republicans maintained control of both the U.S. House of Representatives and the Senate. Having control of Congress and the White House gives Republicans a chance to fulfill a promise they have campaigned on for years—to repeal and replace the ACA. Even if they are not successful in passing a repeal and replacement bill, President Trump can use his executive powers to rewrite existing regulations and implement new policies that undermine and reshape the law. Although there has been general agreement about the problems facing the U.S. healthcare system—high costs, high uninsured rates, health disparities, quality concerns—politicians and voters have disagreed about the best solutions. As a result, many previous attempts to pass national health reform legislation did not succeed. This chapter begins with a discussion of why it has been so difficult (continues) *Wilensky, S. E., Teitelbaum, J. B. (2018). 2018 Annual Health Reform Update . Burlington, MA: Jones & Bartlett Learning.

Wilensky, S. E., Teitelbaum, J. B. (2016). Essentials of Health Policy and Law . Burlington, MA: Jones & Bartlett Learning. 137 CHAPTER 7 ▸ Health Reform in the United States: Recent and Past History The array of problems facing the healthcare sys - tem has led to numerous health reform propos - als and implemented policies. The concept of health reform can have several different mean - ings. Given the patchwork health insurance system, health reform often refers to changes that seek to reduce the number of uninsured.

Due to the high and increasing cost of health - care services, health reform might also include changes that seek to contain costs and control utilization. The notion of health reform could also address other shortcomings, such as trying to reduce medical errors, strengthening patient rights, building the public health infrastructure, and confronting the rising cost of medical mal - practice insurance. The Affordable Care Act (ACA), the federal health reform law passed in 2010, touches on many of these issues (Patient Protection Affordable Care Act, 2010). Health reform has been difficult to achieve in the United States. Many reform efforts have been attempted, with varying degrees of success, on a national level. Numerous authors have ad - dressed the main factors that deter significant social reform in this country, including health reform (Blake & Adolino, 2001; Gordon, 2003; Jost, 2004). Factors that are prominently dis - cussed include the country’s culture, the nature of U.S. political institutions, the power of inter - est groups, and path dependency (i.e., the notion that people are generally opposed to change). Americans have a complicated and parti - san view of the proper role of the federal gov - ernment in the healthcare arena. On one hand, 60% of respondents to a 2017 survey felt that the federal government has a responsibility to ensure healthcare coverage for all Americans (Pew Research Center, 2017). This is much higher than the 47% who shared that view in 2010, at the height of the health reform debate to achieve broad health reform in this country. It summarizes the history of failed attempts at health reform and examines how health reform was enacted in 2010. It provides an overview of the law that eventually emerged, and covers the U.S. Supreme Court decision upholding its constitutionality. The chapter then raises questions about the current political climate and what it means for health reform going forward, including a discussion of key political and implementation issues. Several key themes are discussed: choosing between state flexibility and national uniformity; determining the appropriate role for government, the private sector, and the healthcare financing and delivery entities; defining a primary decision-making goal (e.g., fiscal restraint, equity/social justice, improved health outcomes, uniformity); and settling on the appropriate scope of coverage to offer beneficiaries.

OVER VIEW (continued) OBJECTIVES ■ Describe previous national health reform attempts. ■ Discuss why national health reform has been difficult to achieve in the United States. ■ Analyze why national health reform succeeded in 2010 when so many previous attempts had failed. ■ Identify the key components of the Patient Protection and Affordable Care Act. ■ Articulate the core rulings of multiple U.S. Supreme Court decisions related to the Affordable Care Act. ■ Evaluate the political climate regarding repealing and replacing the Affordable Care Act, and understand the main features of legislation drafted toward that end. ■ Describe key issues going forward related to implementation of the Affordable Care Act. 138 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain (Newport, 2010). Of those who supported fed - eral intervention in the 2017 survey, 33% would like to see a single-payer system developed (Pew Research Center, 2017). At the same time, there was a stark dif - ference of opinion based on the respondent’s political views. While 85% of Democrats and Democrat-leaning independents believed the federal government was responsible for ensur - ing healthcare coverage, only 32% of Repub - licans and Republican-leaning independents agreed (Pew Research Center, 2017). Even so, over half (57%) of Republicans and Repub - lican-leaners supported the continuation of Medicaid and Medicare, the country’s largest public health insurance programs. Further - more, only 5% of respondents thought the fed - eral government should not have any role in ensuring healthcare coverage (Pew Research Center, 2017). Many aspects of the U.S. political system also make it difficult to institute sweeping re - form. For example, although presidents have significant influence on policy agenda setting and proposing budgets, they have limited power to make changes without the assistance of the U.S. Congress. The federal government is often politically divided, with different parties holding power in the executive and legislative branches.

This division often results in partisanship and policy inaction due to different policy priori - ties and views. Furthermore, although members of Con - gress may ride the coattails of a popular presi - dent from their own party, they are not reliant on the president to keep their jobs. The issues and views their constituents care about most may not align with the president’s priorities. In those cases, members of Congress have a strong incentive to adhere to the wishes of those who vote for them, instead of simply following the president’s lead. Barring an overwhelming wave of discontent, as occurred in the 2010 midterm elections when Democrats suffered historic losses in Congress, it is usually difficult to un - seat incumbents. Even when there is a historic level of turnover, reelection rates remain very high. For example, 97% of House incumbents successfully defended their seats in 2016; even in the Senate, where turnover is relatively more common, 93% of incumbents won reelection in 2016 (Kondick & Skelley, 2016). As a result, legislators in Congress may have confidence in focusing on their district’s or state’s needs before those of the entire nation. Federal legislative rules also support in - action or incremental reform over sweeping changes. In the U.S. Senate, 60 (of 100) votes are needed to break a filibuster in most cases.

Thus, even the political party in the majority can have difficulty effectuating change. One exception to the filibuster rule is the “recon - ciliation” process, which allows bills to pass with only 51 votes. Reconciliation is used as part of the budgetary process, and bills passed via reconciliation: (a) may not be filibustered (so can pass with 51 votes), (b) can only per - tain to federal revenue and spending issues, (c) must comply with spending and revenue targets set forth in the budget resolution, and (d) must adhere to other budgetary rules (Tax Policy Center, 2017). The reconciliation pro - cess is being increasingly used when one party maintains a slim majority and that party cannot find 60 votes to pass a bill. In 2010, the Demo - crats used a reconciliation bill to pass the ACA after they lost their filibuster-proof majority, and recently, the Republicans attempted to use a reconciliation bill to pass their ACA repeal and replace bills.

Historical Attempts and Failures at Health Reform Since the early 1900s, when medical knowl - edge became advanced enough to make health care and health insurance desirable commod - ities, there have been periodic attempts to im - plement universal coverage through national health reform. The Socialist Party was the first U.S. political party to support health insurance in 1904, but the main engine behind early efforts for national reform was the American Associa - tion for Labor Legislation (AALL), a “social pro - gressive” group that hoped to reform capitalism, Health Reform in the United States: Recent and Past History 139 in the death benefit business was strongly op - posed to a bill that included a death benefit pro - vision. Employers, healthcare providers, and insurers have, in general, remained staunch opponents of national health reform over the years, whereas unions have supported national reform efforts. However, this dynamic has changed recently with more provider groups, employers, and even some insurers calling for a national solution to the problems of rising healthcare costs and the uninsured. The country’s entry into World War I in 1917 also changed the health reform debate.

Many physicians who supported the AALL bill entered the military, shifting their focus away from the domestic health policy debate.

Anti-German sentiment was high, so oppo - nents of the bill gained traction by denouncing compulsory health insurance as anti-American.

One pamphlet read: “What Is Compulsory Social Health Insurance? It is a dangerous device, invented in Germany, announced by the German Emperor from the throne the same year he started plotting and preparing to conquer the world” (Starr, 1982, p. 253). The next time national health insurance might have taken hold was from the mid-1930s through the early 1940s as the country was cop - ing with the difficulties of the Great Depres - sion. During this time there was a significant increase in government programs, including the creation of Social Security in 1935, which pro - vided old-age assistance, unemployment com - pensation, and public assistance. Yet the fourth prong of the social insurance package, health insurance, remained elusive. President Franklin Roosevelt heeded his staff ’s advice to leave health insurance out of Social Security because of the strong opposition it would create (Starr, 1982, p. 267). Opposition from the AMA was particularly strong—they believed that “social - ized medicine” would increase bureaucracy, limit physician freedom, and interfere with the doctor–patient relationship. Even so, members of Roosevelt’s adminis - tration continued to push for national health in - surance. The Interdepartmental Committee to not overthrow it (Starr, 1982, p. 243). In 1912, Progressive Party candidate Theodore Roosevelt supported a social insurance platform modeled on the European social insurance tradition that included health insurance, workers’ compensa - tion, old-age pensions, and unemployment in - surance. After his loss to Woodrow Wilson, the national health insurance movement was with - out a strong national leader for three decades. The AALL continued to support a form of health insurance after Roosevelt’s defeat and drafted a model bill in 1915. This bill followed the European model, limiting participation to working class employees and their dependents.

Benefits included medical aid, sick pay, mater - nity benefits, and a death benefit. These costs were to be financed by employers, employees, and the state. The AALL believed that health insurance for the working population would reduce poverty and increase society’s produc - tivity and well-being through healthier work - ers and citizens. Opposition to AALL’s bill came from sev - eral sources (Starr, 1982, pp. 247–249). Although some members of the American Medical Asso - ciation (AMA) approved of the bill conceptu - ally, physician support rapidly evaporated when details emerged about aspects of the plan that would negatively impact their income and auton - omy. The American Federation of Labor (a labor union) opposed compulsory health insurance because it wanted workers to rely on their own economic strength, not the state, to obtain bet - ter wages and benefits. In addition, the federa - tion was concerned that it would lose power if the government, not the union, secured bene - fits for workers. Employers were generally op - posed to the bill, contending that supporting public health was a better way to ensure pro - ductivity. In addition, they feared that providing health insurance to employees might promote malingering instead of reducing lost workdays.

After experiencing the high cost associated with workers’ compensation, employers also were not eager to take on an additional expensive bene - fit. Of course, the part of the insurance industry that had already established a profitable niche 140 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain proposal, and most other healthcare groups op - posed it as well. Although the public initially approved of it, there was no consensus about how national health insurance should be structured, and more people preferred modest voluntary plans over a national, compulsory, comprehensive health insurance program (Starr, 1987, p. 282).

Additional opposition came from the American Bar Association, the Chamber of Commerce, and even some federal agencies concerned about los - ing control over their existing programs. In the end, only the hospital construction portion of the proposal was enacted. When Truman won reelection on a national health insurance platform in 1948, it appeared the tide had turned. However, the AMA con - tinued its strong opposition and its attempts to link national health insurance to socialism.

Congress considered various compromises but never reached a consensus. The public remained uncertain about what kind of plan to favor. Em - ployers maintained their opposition to compul - sory insurance. In addition, one large group of potential supporters—veterans—was disinter - ested in the debate because they had already se - cured extensive medical coverage through the Veterans Administration. As the Korean War moved forward, Truman’s focus shifted away from national health insurance and toward the war effort and other priorities. National health insurance did not return to the national policy agenda until the 1970s.

The landscape then was quite different from Truman’s era. Medicaid and Medicare had been created, healthcare costs had begun to rise ex - ponentially, and the economy was deteriorat - ing. In 1969, President Nixon declared that a “massive crisis” existed in health care and that unless it was fixed immediately, the country’s medical system would collapse (Starr, 1982, p. 381). The general public seemed to agree, with 75% of respondents in one survey concurring that the healthcare system was in crisis (Starr, 1982, p. 381). Democrats still controlled Con - gress by a significant margin, and Senator Edward Kennedy (D-MA) and Representative Martha Griffiths (D-MI), the first woman to serve on Coordinate Health and Welfare Activities was created in 1935 and took on the task of study - ing the nation’s healthcare needs. This job fell to its Technical Committee on Medical Care.

Instead of supporting a federal program, the committee proposed subsidies to the states for operating health programs. Components of the proposal included expanding maternal and child health and public health programs under Social Security, expanding hospital construction, in - creasing aid for medical care for the indigent, studying a general medical care program, and creating a compensation program for those who lost wages due to disability. Although President Roosevelt established a National Health Conference to discuss the recommendation, he never fully supported the Medical Care Committee’s proposal. With the success of conservatives in the 1938 election and the administration’s concerns about fight - ing the powerful physician and state medical society lobbies, national health reform did not have a place on Roosevelt’s priority list. Senator Robert Wagner (D-NY) introduced a bill that followed the committee’s recommendations in 1939, and although it passed in the Senate, it did not garner support from the president or from the House. World War II provided another opportu - nity for the opposition to label national health insurance as socialized medicine. But once the war neared an end, President Roosevelt finally called for an “economic bill of rights” that in - cluded medical care. President Truman picked up where Roosevelt left off, strongly advocating for national health insurance. President Truman’s proposal included expanding hospitals, increasing public health and maternal and child health ser - vices, providing federal aid for medical research and education, and, for the first time, a single health insurance program for all (Starr, 1982, p. 281). Heeding lessons from earlier reform fail - ures, Truman emphasized that his plan was not socialized medicine and that the delivery system for medical and hospital care would not change. Again, there was strong opposition to the proposal. The AMA vehemently rejected the Health Reform in the United States: Recent and Past History 141 an alternative that provided tax credits for buy - ing private insurance. After the 1972 election, Nixon proposed a second plan that covered everyone and offered more comprehensive coverage. Private insur - ance companies would cover the employed and a government-run program would cover the rest of the population, with both groups receiv - ing the same benefit package. Senator Kennedy and Representative Wilbur Mills (D-AR) sup - ported a similar plan, and it appeared a compro - mise was close at hand. However, labor unions and liberal organizations preferred the orig - inal Kennedy plan and resisted compromis - ing with the hope of gaining power in the 1974 post-Watergate elections. Fearing the same po - litical shift, insurance companies actually sup - ported a catastrophic insurance plan proposed by Senator Russell Long (D-LA), believing it was better than any plan that would come out of a more liberal Congress after the elections.

Once again, there was no majority support for any of the bills, and a national health insurance plan was not enacted. Although President Jimmy Carter gave lip service to national health reform, he never fully supported a proposal. It was not until the elec - tion of Bill Clinton in 1992 that the next real at - tempt at national health insurance was made.

The Clinton administration plan, dubbed the Health Security Act, was designed to create na - tional health insurance without spending new federal funds or shifting coverage from private to public insurance. It relied on the concept of “managed competition,” which combined ele - ments of managed care and market competition. Under the Health Security Act, a National Health Board would have established national and regional spending limits and regulated pre - mium increases. “Health alliances” would have included a variety of plans that were competing for the business of employees and unemployed citizens in each geographic area. All plans were to have a guaranteed scope of benefits and uni - form cost sharing. Employers would have been required to provide coverage for their workers the powerful House Committee on Ways and Means, proposed a comprehensive, federally operated health insurance system. At the same time, a movement supporting health care and patient rights was gaining mo - mentum. These included rights to informed consent, to refuse treatment, to due process for involuntary commitment, and to equal access to health care (Starr, 1982, p. 389). The public was both anxious to obtain care and willing to challenge the authority of healthcare providers. The Nixon administration’s first attempt at health reform focused on changing the health - care system’s financing from one dominated by a fee-for-service system, which created incen - tives to provide more and more expensive ser - vices, to one that promoted restraint, efficiency, and the health of the patient. The result was a “health maintenance strategy” intended to stimulate the private industry to create health maintenance organizations (HMOs) through federal planning grants and loan guarantees, with the goal of enrolling 90% of the popula - tion in an HMO by the end of the 1970s (Starr, 1982, pp. 395–396). Ironically, group health plans, often labeled socialized medicine, had become the centerpiece of a Republican reform strategy. Nixon’s proposal included an employer mandate to provide a minimum package of benefits under a National Health Insurance Standards Act, a federally administered Fam - ily Health Insurance Program for low-income families that had a less generous benefit package than the one required by the National Health Insurance Standards Act; reductions in Medi - care spending to help defray the costs; a call for an increase in the supply of physicians; and a change in how medical schools were subsi - dized. Opponents were plentiful, and this plan did not come to fruition. Some believed the plan was a gift to private insurance companies. Ad - vocates for the poor were outraged at the sec - ond tier of benefits for low-income families.

The AMA was concerned about HMOs inter - fering with physician practices and supported 142 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain partisan differences, and the recent passage of two massive government spending bills, Presi - dent Obama pursued a national health reform plan. Given the history of failed reform efforts, it would have been an accomplishment to pass health reform in the best of times, and clearly this was not the best of times. Health care has long been a priority for Democrats, and President Obama was no ex - ception. Perhaps Obama’s dedication to pass - ing health reform stemmed in part from his personal experience: Obama’s mother died of ovarian cancer, and he had seen her worry about paying her medical bills as much as beat - ing the disease ( CNN , 2007). Thus, for Obama, signing comprehensive health reform legisla - tion into law would represent the opportunity to make sure that others would not endure the same experience. Health reform efforts did not begin smoothly. President Obama initially wanted former U.S.

senator Tom Daschle to run both the U.S. Depart - ment of Health and Human Services (USDHHS) and the White House Office on Health Reform.

It was thought that his experience in the Sen - ate and relationships with legislators were the right combination to take the lead on health re - form. When his nomination was derailed due to personal tax problems, it was not a good omen.

As deliberations in Congress lagged, Demo - crats were not able to present a bill to Presi - dent Obama before recessing for the summer.

During the summer of 2009, members of Con - gress went home to their constituents and held town hall meetings to discuss health reform.

Some of the meetings erupted in vocal opposi - tion to health reform, and the media focused on these town hall meetings throughout the sum - mer. Obama and the Democrats were criticized for losing the momentum for reform by letting the debate linger. At the same time, there were several in - stances when the health reform effort appeared politically doomed, and President Obama’s leadership made a clear difference. Obama at - tempted to reclaim the upper hand on health at a defined high level of benefits, and those with 5,000 employees or fewer would have had to purchase plans through the health alliance.

Subsidies were provided for low-income indi - viduals and small businesses. Funding was to be provided from cost-containment measures that were reinvested. Forced by the Congressional Budget Office (CBO) to provide an alternative funding strategy should the cost containment not create enough funds, the plan also included the option of capping insurance premium growth and reducing provider payments. Like the national health insurance plans be - fore it, the Health Security Act had opponents from many directions. The health alliances were attacked as big government, employers resisted mandates and interference with their fringe ben - efits, some advocates feared that cost contain - ment would lead to care rationing, the insured were concerned about losing some of their ex - isting benefits or cost-sharing arrangements, the elderly feared losing Medicare, and academic health centers were concerned about losing funds based on new graduate medical educa - tion provisions. In addition, the usually strong support from unions was missing because of an earlier disagreement with the president on trade matters. It is also generally accepted that the Clinton administration made several po - litical mistakes that made a difficult political chore nearly impossible. The Health Security Act never made it to a vote.

The ACA Becomes Law In many ways, 2010 was a very unlikely year to pass a national health reform plan. The country had been growing increasingly ideological, with the popular and electoral votes almost evenly split in both the 2000 and 2004 presidential elections. Even though Barack Obama won the electoral vote in a landslide over John McCain (365 to 173), only 53% of the population voted for Obama in 2008 ( CNN , 2008). In addition to the ideological divide, and against a backdrop of a faltering economy, Health Reform in the United States: Recent and Past History 143 reform. Reid’s and Pelosi’s determination to see health reform succeed, and their skill in mobi - lizing and controlling their caucuses, were es - sential to the passage of the ACA. It is likely that health reform would not have passed without the skillful efforts of all three leaders working together. Even so, it is clear that the health re - form effort would not even have begun without a president who put health reform at the top of the agenda and stuck with it despite the pitfalls and political opposition. The legislative process for completing the bill was long, rocky, and ultimately partisan. The House of Representatives moved more quickly and with less fractious debate than the Senate.

Instead of having multiple House committees work on competing bills, as occurred during the Clinton administration, House Democratic lead - ers created a “Tri-Committee” bill jointly spon - sored by Charles Rangel (D-NY), Henry Waxman (D-CA), and George Miller (D-CA), the chair - men of the House Ways and Means, Energy and Commerce, and Education and Labor (later re - named the Education and Workforce committee) committees, respectively. On November 7, 2009, the House passed its health reform bill with only two votes to spare, 220–215 (Affordable Health Care for American Act, H.R. 3962, 2009). Only one Republican voted for it, and 39 conserva - tive Democrats voted against it. The bill from the then-more-liberal House contained several provisions that were likely to be rejected by the Senate: a public health insurance option to com - pete with private plans, a national health insur - ance exchange instead of state-based exchanges, more generous subsidies for low-income indi - viduals, a broader expansion of Medicaid, and higher taxes on wealthier Americans. Finance Committee Chairman Max Baucus (D-MT) led the effort in the Senate. The legis - lative process he established was lengthy, and some observers believed he compromised on too many issues in an attempt to forge a bipar - tisan bill. For a time Senator Charles Grassley (R-IA) actively participated in the health reform deliberations, and a few other Republican sen - ators appeared willing to consider a bipartisan reform with a speech to a joint session of Con - gress in September 2009. He memorably pro - claimed, “I am not the first president to take up health reform, but I intend to be the last” (The New York Times , 2009). Although public support for health reform had been on the de - cline for several months, September 2009 polls showed that 62% still thought it was important to address health reform at that time, and 53% thought the country as a whole would be bet - ter off if health reform passed (Kaiser Family Foundation, 2009). Less support existed for the Democrats’ specific reform proposal, however, with 46% in support of the proposed change and 48% opposed to it (Cohen & Baltz, 2009). In January 2010, an event occurred that some assumed was the death knell of health reform. In the 2008 elections, Democrats had made significant gains in Congress, earning a 59–41 majority in the Senate and a 257–178 ma - jority in the House. Furthermore, Senator Arlen Specter of Pennsylvania switched parties, giv - ing Democrats the crucial 60th vote needed for a filibuster-proof majority. Although the num - bers were now in their favor, President Obama, Senate Majority Leader Harry Reid (D-NV), and House Speaker Nancy Pelosi (D-CA) would have to balance the competing interests of con - servative Democrats who were concerned with having too much government intervention, pro - gressive Democrats who sought a public insur - ance option to compete with private companies, Blue Dog Democrats who were most concerned with fiscal discipline, and pro-life and pro- choice factions who would battle over whether and how abortion services would be included in any health reform bill. The Obama administration tried to avoid events that doomed earlier health reform efforts.

Although the failed effort by the Clinton admin - istration probably provided the most relevant lessons, Obama confronted some of the same obstacles that reformers had faced decades ear - lier. At times, President Obama was accused of learning some of the lessons too well, swinging the pendulum too far to the other side. Obama was not alone in providing leadership on health 144 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain ▸ Overview of the Patient Protection and Affordable Care Act While President Obama left the details of health reform legislation to Congress, he did lay out what he believed to be the most important principles that should guide the legislation’s development.

Soon after becoming president in 2009, Obama delineated those principles, saying that any health reform measure should do the following:

1. Protect families’ financial health (slowing the growth of out-of-pocket expenses and protecting people from bankruptcy due to catastrophic ill - ness). 2 . Make health insurance coverage more affordable (reducing administrative costs, wiping out unnecessary tests and services, and limiting insurers’ ability to charge higher premiums for certain populations). 3. Aim for insurance coverage univer - s a l it y. 4. Provide portability of insurance coverage. 5. Guarantee choice of health plans and providers (including keeping current ones). 6. Invest in disease prevention and wellness initiatives. 7. Improve patient safety and healthcare qu a l it y. 8. Maintain long-term fiscal sustain - ability (reducing cost growth, im - proving productivity, and adding new revenue sources). The extent to which these principles were brought to life in what eventually became the Affordable Care Act lives along a spectrum: for example, (1) health insurance was absolutely made more affordable for millions of people; (2) disease prevention and wellness initiatives seem to be gaining momentum, though slowly; and measure. Ultimately, however, a bipartisan agree - ment could not be reached. In a 2009 Christmas Eve vote, the Baucus health bill passed 60–39, with all Democrats and two Independents vot - ing for the measure and all Republicans voting against it (Patient Protection and Affordable Care Act, H.R. 3590, 2009). Following tumultuous disagreements with ver - sions of the plan, and the loss of a filibuster-proof majority, the House and Senate leaders agreed to use the budget reconciliation process to amend the Senate bill. The House then passed the Senate version of the bill along with a companion rec - onciliation bill that amended certain aspects of the Senate bill. The reconciliation bill included more generous subsidies for individuals to pur - chase insurance than existed in the standalone Senate bill, the closure of the Medicare Part D doughnut hole, a tax on more generous insur - ance plans, changes to the penalties on indi - viduals who would not buy insurance and for employers that would not offer insurance, and an increase in Medicare and investment taxes for higher earners. The Senate then passed the rec - onciliation bill. Once again, the final vote to ap - prove the bills was along party lines. The House approved the Senate bill by a vote of 219–212, with all Republicans and 34 Democrats voting against it (Khan, 2010). President Obama signed the bill into law on March 23, 2010 (Patient Pro - tection Affordable Care Act, 2010). Some observers argue that Obama may have overlearned the lesson about working with Con - gress, and that in doing so, he did not provide enough guidance to legislators and allowed the debate over health reform to linger for too long (Morone, 2010, p. 1097). On the one hand, it is difficult to criticize Obama’s approach because he was ultimately successful. On the other hand, could the problems stemming from the 2009 town halls have been avoided? Would public opinion of the health reform effort be higher if the process had been better managed? Only time will tell whether Obama was successful over the long term. With the volatility and divisive parti - san bickering of today’s Congress, what the fu - ture holds is still unclear. Overview of the Patient Protection and Affordable Care Act 145 ■ Free riders: Without the mandate, some healthy individuals would choose not to purchase health insurance but then later need health care, and they will likely receive some care even though they are uninsured.

This is especially true if the individuals have the resources to pay for healthcare services. These individuals are referred to as free riders because they avoid paying premiums for health insurance during their healthy years but then enjoy the benefits of healthcare services when they become sick. ■ Funding : The penalty is intended to provide both an incentive to comply with the law and to raise funds to cover the cost of health care for those individuals who choose not to carry health insurance. In addition, it ensures that everyone covered by the mandate will be in an insurance pool to help cover costs and share risk.

If the individual mandate were not so im - portant the ACA’s success, it would not have been included because it is politically unpop - ular; many feel it represents unwarranted gov - ernment intrusion into private decision making.

People have expressed that they do not like the federal government telling them to purchase health insurance, even if it is a choice they made on their own prior to the ACA. Even so, afford - ability, not government intrusion, has been the top concern raised about the ACA (DiJulio, Kirzinger, Wu, & Brodie, 2017; Kaiser Family Foundation, 2014). A parallel mandate change is the employer mandate. As written in the ACA, employers with 50 or more employees and at least 1 employee who qualifies for a tax credit were required to offer affordable health insurance or pay a pen - alty beginning in 2014. Given their smaller pool of employees, small businesses have often found it quite expensive to offer health insurance to their employees. In addition to exempting busi - nesses with fewer than 50 employees from the employer mandate, Congress also included a small business tax credit to encourage these em - ployers to provide coverage. (3) universal insurance coverage was absolutely not achieved. Whatever the case with any par - ticular principle, it is instructive to look to four key reforms that became law under the ACA as having paved the way for President Obama’s overall vision to come to fruition. These four reforms essentially reordered long-standing re - lationships among health system stakeholders (individuals, providers, insurers, employers, gov - ernments, etc.). As a result of this reordering, all of these stakeholders were legally obligated to alter normative behaviors. These changes in - clude: (1) mandates (individual and employer); (2) changes to private insurance rules; (3)  creation of health insurance exchanges; and (4) expan - sion of Medicaid. The first major mandate change, known as the individual mandate, is a requirement that most individuals maintain “minimum essen - tial health coverage” (i.e., health insurance) or face financial penalties that are spelled out in the ACA. This requirement was a critically import - ant beam in the ACA architecture; because it cre - ates a new, large pool of individuals who will be paying premiums to insurance companies, it cre - ated leverage for policymakers who were eager for private insurers to accept many of the ACA’s other insurance reforms that may otherwise have been unpalatable. For certain individuals whose socioeconomic status makes it impos - sible for them to purchase (or gain through an employer) the type of minimum coverage man - dated by the ACA, and who do not qualify for Medicaid (even under the ACA expansion), fed - eral subsidies are made available under the law. The individual mandate is an essential part of health reform for several key reasons:

■ Adverse selection: Without the mandate, people who are in poor health or otherwise expect to use more healthcare services would be more likely to purchase health insurance, while healthier people would be more likely to opt out of insurance coverage. This would lead to an insurance pool that is relatively sick and thus more expensive, a problem referred to as adverse selection . 146 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain • Preventive care and screening for women based on guidelines to be is - sued by the Health Resources and Ser - vices Administration ■ Coverage limits: Individual and group plans may not impose annual or lifetime dollar limits on coverage. ■ Rescission: Individual and group plans may not rescind coverage except in the case of fraud. ■ Appeals: New health insurance plans must have an effective appeals process that includes an external review option. ■ Guaranteed issue and renewability: In - dividual and group plans may not exclude or charge more to individuals based on preexisting conditions or health status in the individual market, small-group market, and exchanges. ■ Rate variation limits: Premium rates may only vary based on age, geographical area, family composition, and tobacco use in the individual market, small-group market, and exchanges. ■ Essential health benefits: Insurers providing coverage to small businesses, individuals, and in the exchanges have to provide essential health benefits through one of four plan categories (bronze, silver, gold, or platinum) and adhere to annual cost-sharing limits. ■ Wellness plans: Employers may offer rewards that reduce the cost of coverage to employees for participating in a wellness plan.

The third key change is the creation of health insurance “exchanges” or “marketplaces” in each state. These are essentially online shopping sites, the purpose of which is to make it easier for in - dividuals and small employers to compare and purchase private health insurance plans. The ex - changes are a critical component of health re - form because it would be untenable to require individuals to purchase health insurance with - out also making comprehensive and affordable health insurance options available. The ACA originally included two exchanges, one for individuals (American Health Benefit Under the mandate, covered employers have three options: (1) provide affordable health in - surance and not pay a penalty, (2) provide health insurance not considered affordable and pay a penalty, or (3) do not provide health insurance and pay a penalty. The penalties are based on whether an employer offers health insurance and whether any full-time employees take a premium tax credit. The amount of the pen - alty increases over time based on the national increase in premium costs. The employer man - date was put in place to encourage employers to continue offering or start offering health insur - ance. Without such a mandate employers may have found it profitable not to offer health insur - ance and let their employees purchase health in - surance through state exchanges, shifting more of the costs of health reform to the public sec - tor and taxpayers. The second fundamental change results from reforms that prohibit or curtail existing health insurer and health plan practices (i.e., rules that require insurers and health plan prac - tices to assure their products do not restrict pur - chasers and provide certain eligible coverage). These rules limit discrimination by insurers, provide benefit guarantees, and address some costs concerns. Some of the key private insur - ance rule changes include:

■ Preexisting conditions: Individual and group plans may not exclude individuals due to their health status or based on preexisting conditions. ■ Dependent coverage: Individual and group plans must provide dependent coverage up to age 26. ■ Preventive services: New health plans may not impose cost sharing for certain preven- tive services, including the following:• Preventive services with an A or B rating from the U.S. Preventive Services Task Force • Immunizations recommended by the Centers for Disease Control and Pre- vention’s Advisory Committee on Im- munization Practice Overview of the Patient Protection and Affordable Care Act 147 9. Prevention and wellness services and chronic disease management services 10. Pediatric services, including vision and dental services The final major reform is an expansion of the existing Medicaid program. Under the ACA, a new Medicaid category was created that expanded eligibility to all non-Medicare adults under age 65 who earned below 138% of the pov - erty level. This provision also included financing and benefit requirements specific to the expan - sion population. While Congress intended this expansion to be mandatory across the country, the Supreme Court determined that Congress did not have the authority to force states to expand Medicaid in this manner. As a result, the expan - sion is optional and as of November 8, 2017, 32 states and the District of Columbia have chosen to expand Medicaid under the ACA (Advisory Board, November 8, 2017). Medicaid expansion in the ACA provided a way to increase access to health care within the federal and state mecha - nisms already in place, but it remains controver - sial because many oppose the idea of expanding this entitlement program. Although the ACA does not completely alter the way health insurance is provided by esta blishing a single-payer system or even a large government-run insurance plan to compete with private insurers, the law does make significant philosophical and practical changes in how health insurance is regulated, structured, and adminis - tered. Indeed, as a result of the reforms and re - ordering just described, recent estimates indicate that the ACA has resulted in 20  million people gaining insurance, dropping the uninsured rate from 16% in 2010 to a historically low 9.1% in early 2016 (Graves & Nikpay, 2017). In addition, as a result of the essential health benefits require - ment, there is a large segment of the population that is no longer underinsured because of insurance plans that do not offer comprehensive benefits. Even so, many people contend that the ACA falls short in its reform of the healthcare delivery system. And in many cases they are correct. The Exchange) and one for small business (Small Busi - ness Health Options Program, or SHOP). The SHOP exchange struggled from the start with implementation delays and much lower than anticipated enrollment (Aron-Dine, 2017). The Trump administration has decided to end the SHOP exchange and look for alternative meth - ods to assist small businesses. The Congressio - nal Budget Office (CBO) projects that by 2027, 13 million individuals will purchase their own health insurance through an exchange (Jost, May 15, 2017). Premium subsidies are available to individ - uals, U.S. citizens, and legal immigrants who do not have access to affordable (as defined by the ACA) employer-sponsored insurance, meet spec - ified income requirements, file taxes jointly (if married), are not incarcerated, and are not eli - gible for Medicaid, Medicare, or CHIP (Kaiser Family Foundation, November 8, 2017). In ad - dition, cost-sharing subsidies are available to certain low-income individuals. The Trump ad - ministration recently decided not to fund the cost-sharing subsidies, so their continued exis - tence is uncertain. Exchange plans must follow ACA criteria regarding plan benefits, payments, and consumer information. Plans may not de - sign their benefit or reimbursement packages in ways that discriminate based on age, disability, or expected length of life (Rosenbaum, Teitelbaum, & Hayes, 2011). For the first time, private health insurance plans are subject to a federal standard regarding what benefits must be offered inclu - ding the following essential health benefits: 1. Ambulatory patient services 2. Emergency services 3. Hospitalization 4. Maternity and newborn care 5. Mental health services and substance use disorder services, including be- havioral health treatment 6. Prescription drugs 7. Rehabilitative and habilitative ser - vices and devices 8. Laboratory services 148 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain (an adjustment in the Medicare physician fee schedule pertaining to physician produc - tivity) for certain providers that will result in lower reimbursement rates. ■ Medicare Advantage payments: Reduces reimbursement rates and imposes cost- sharing limits for Medicare’s managed care plans. ■ Medicare Part A (hospital insurance): Increases Medicare Part A tax rate for high-income earners. ■ Medicare premiums: Reduces Medicare Part D (prescription drug) premium subsidy for high-income beneficiaries. ■ Medicare employer subsidy: Eliminates tax deduction for employers who receive a Medicare Part D (prescription drug cov - erage) subsidy. ■ Disproportionate share hospital (DSH) payments: Reduces Medicare payments to DSH hospitals; payments may increase over time based on percentage of uninsured served and uncompensated care provided; also reduces Medicaid DSH payments and requires USDHHS to develop a new funding formula. ■ Medicaid prescription drugs: Increases rebates that drug manufacturers give to state Medicaid programs ■ Income tax code provisions: Increases the threshold from 7.5% to 10% of adjusted gross income to claim deduction for un - reimbursed medical expenses. Prohibits purchasing over-the-counter drugs with tax-free savings accounts, increases the tax burden on distributions not used for qualified medical expenses, and limits the amount individuals may put in accounts toward medical expenses. ■ Health industry fees: Imposes a 10% tax on indoor tanning services, 2.3% tax on all taxable medical devices, annual fees on the pharmaceutical manufacturing sector, and fees on the health insurance sector. ■ Health insurance plans: Imposes a tax on employer-sponsored health insurance ACA is most notable for the transformations it makes to health insurance—both access to it and its content—rather than for structural reforms made to the delivery system. Many provisions that focus on improving the healthcare delivery system, increasing the quality of care received by patients, reducing healthcare costs, and incentiv - izing providers to reconsider traditional meth - ods of delivering care, often exist in the form of temporary pilot programs that may never be en - acted permanently even if they prove to be valu - able. Other analysts contend that these provisions were written as strongly as they could be at the time given the political environment and data available to policymakers. According to this view, the ACA provides the United States Secretary of Health and Human Services with unprecedented authority to make the pilot programs permanent, and it would have been irresponsible to imple - ment more permanent, wholesale changes with - out more evidence. In any case, as sweeping as the ACA is, it is far from being the last step that needs to be taken to improve how health care is provided in the United States.

▸ Financing Health Reform Congress financed health reform primarily through Medicare and Medicaid savings, ex - cise taxes and fees on the healthcare industry, changes to the income tax code, a tax on some health insurance plans, and expected individual and employer payments for violating insurance mandates. Several of these financing changes were made as part of the deals the Obama ad - ministration struck with various stakeholders.

The ACA’s main financing features are as follows:

■ Medicare provider reimbursement: Reduces “market basket” or cost updates for inpatient and outpatient hospital reimbursement, reduces payments for preventable hospital readmissions and hospital-acquired infec - tions, and includes productivity adjustments Financing Health Reform 149 by the National Strategy for Quality Improve - ment and the Patient-Centered Outcomes Re - search Institute (PCORI). The priorities of the National Strategy for Quality Improvement in - clude improving delivery of healthcare services, patient outcomes, and population health. PCORI, a comparative effectiveness institute, was created to consider the clinical effectiveness of medical treatments. The idea behind comparative ef - fectiveness is to determine which procedures, devices, and pharmaceuticals provide the best value for a given outcome. The institute is de - signed to supply information to help providers, patients, and others make decisions; Congress has stipulated, however, that findings from the institute may not be construed as mandates or recommendations for payment, coverage, or treatment decisions. The ACA also provides funds to pro - mote public health, wellness, and a stable and high-quality healthcare workforce. In addition to the Public Health and Prevention Fund, the law calls for the creation of a new Regular Corps and a Ready Reserve Corps to assist when pub - lic health emergencies occur. Also, a variety of programs and incentives are in place to pro - mote employer wellness programs. Finally, the workforce shortage is addressed through grad - uate medical education reforms that promote primary care training; increases in scholarships and loans to support primary care providers and workforce diversity; and education, train - ing, and loan repayment programs to address the primary care nursing shortage.

▸ Constitutionality U.S. Supreme Court’s Decision in the Case of National Federation of Independent Business v. Sebelius In November 2011, in the first of what would be several ACA-related decisions, the U.S. Supreme Court agreed to decide on key issues related to the plans with aggregate expenses that exceed $10,200 for individual coverage or $27,500 for family coverage.

Although it is the responsibility of the CBO to estimate the cost of legislation as it is written, time-bound cost estimates (e.g., a 10-year esti - mate) have their limitations. First, the CBO must assume that all the provisions in the bill will be implemented as written. One of the most unpop - ular cost-saving tools—a tax on more generous health insurance plans—is not slated to take ef - fect until 2018. Second, because the 10-year esti - mate, by design, does not consider costs beyond the first decade, some expected costs are not in - cluded in the estimate. Third, different method - ologies may be used to calculate costs. Fourth, cost estimates cannot account for provisions that are left out of a bill. For these reasons, cost estimates should not be taken as the final word on the cost of any bill, because changes in po - litical will can undermine the best projections.

▸ Quality Improvement and Prevention Initiatives The ACA includes a wide range of quality im - provement activities that fall into three main categories: evaluating new models of delivering health care, shifting reimbursement from vol - ume to quality, and overall system improvement (Abrams, Nuzum, Ryan, Kiszla, & Guterman, 2015). New models of healthcare delivery in - clude accountable care organizations (ACOs), which combine a variety of providers who collec - tively assume responsibility for the cost and qual - ity of patient care, and patient-centered medical homes, which provide comprehensive and coor - dinated primary care. Reimbursement reforms include strategies such as penalizing hospitals with high rates of hospital-acquired infections or providing bonuses or penalties based on perfor - mance on quality measurements. Finally, over - all system improvement efforts are highlighted 150 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain Surprisingly, however, the court’s analysis of the constitutionality of the individual man - date did not end there. The court majority piv - oted to Congress’s power to tax, and ruled that under this separate power, the individual mandate passed constitutional muster. The court wrote: The exaction the Affordable Care Act imposes on those without health insur - ance [i.e., the financial penalty assessed on those who do not obtain minimum health insurance coverage] looks like a tax in many respects. . . . In distinguish - ing penalties from taxes, this Court has explained that “if the concept of penalty means anything, it means punishment for an unlawful actor omission.” While the individual mandate clearly aims to induce the purchase of health insurance, it need not be read to declare that failing to do so is unlawful. Neither the Act nor any other law attaches negative legal consequences to not buying health insurance, beyond requiring a payment to the IRS. (National Federation of Inde - pendent Businesses v. Sebelius , Secretary of Health and Human Services, et  al., 2012, p. 2595 ) Read together, the Supreme Court’s analy - sis of the individual mandate under the Com - merce Clause and the Taxing and Spending Clause leads to the following conclusion: Al - though Congress could not outright command Americans to buy health insurance, it could tax those who chose not to.

Medicaid Expansion The court next addressed whether the ACA’s Medicaid expansion was structured in a way that effectively, and unlawfully, coerced states into adopting it. Fully half of the states in the country—the 26 that sued to halt implemen - tation of the ACA—believed the answer to be “yes.” As originally passed into law, the ACA al - lowed the U.S. Secretary of HHS to terminate all of a state’s Medicaid funding in the event legality of the ACA, including: (1) whether Con - gress had the power under the federal Constitu - tion to enact the individual insurance coverage requirement, and (2) whether it was unconsti - tutionally coercive for Congress, through the ACA, to threaten to take away existing federal Medicaid funding from states that did not want to implement the Medicaid expansion. In June of the following year, the court handed down a remarkable 5–4 decision in the case of National Federation of Independent Busi - nesses v. Sebelius , Secretary of Health and Human Services, et al . (2012). The opinion was surpris - ing for two reasons: It defied expectation—few people thought that the entirety of the ACA would be found constitutional by a majority of the court—and because Chief Justice Roberts, a conservative, ended up in the majority with the court’s relatively liberal members (Justices Ginsburg, Breyer, Sotomayor, and Kagan).

Individual Mandate The court first tackled the question of whether Congress exceeded its authority in effectively forcing most everyone to carry health insur - ance. It concluded, not totally unexpectedly given the outcome of the court’s more recent Commerce Clause decisions ( United States v. Lopez , 549 U.S. 1995; United States v. Morrison , 529 U.S. 598 2000), that the “individual man - date” amounted to an unconstitutional reach on the part of federal legislators: The individual mandate .  .  . does not regulate existing commercial activity. It instead compels individuals to become active in commerce by purchasing a product, on the ground that their failure to do so affects interstate commerce.

Construing the commerce clause to permit Congress to regulate individuals precisely because they are doing nothing would open a new and potentially vast domain to congressional authority. (National Federation of Independent Businesses v. Sebelius , Secretary of Health and Human Services, et al., 2012, p. 2587 ) Constitutionality 151 individually whether to implement it. As of the time of this writing, 31 states and the District of Columbia have adopted the ACA’s Medicaid expansion, while 19 states have not adopted the expansion (though note that the latter number is noticeably lower than the number of states [26] that originally argued in NFIB v. Sebelius that the Medicaid expansion was unconstitutionally coercive) (Advisory Board, November 27, 2017).

▸ States and Health Reform Before the ACA and in the wake of numerous failed attempts at national health reform, states had been active players in health reform. Fill - ing the gap left by the lack of federal action, states took steps to experiment with individ - ual mandates, employer mandates, small busi - ness pools, and programs to reduce the number of uninsured. Although the ACA is a federal law, it is full of state obligations and opportu - nities for state innovation. Even though gover - nors in many states have expressed opposition to health reform, many states will expend sig - nificant efforts toward implementing the ACA over the next several years. The implementa - tion challenges facing states are compounded by the poor economy, which has forced many to cut government agency personnel and bud - gets. States will have their hands full developing and running health insurance exchanges, regu - lating the private health insurance market, and implementing Medicaid changes. The Supreme Court’s decision to transform the ACA’s Medicaid expansion from a mandatory program change to a state option has significant ramifications. As noted previously, 31 states and the District of Columbia have chosen to expand their Medicaid program under the ACA (Advisory Board, November 27, 2017). As a result, by Feb - ruary 2017 there were 16 million more enrollees than prior to the ACA, with most new enroll - ment occurring in expansion states (Medicaid, CHIP Payment and Access Commission, n.d.). that the state failed to implement the Medicaid expansion—even those Medicaid funds that a state would receive that were unconnected to the expansion. This allowance, the states ar - gued, amounted to a coercively unacceptable choice: Either adopt the ACA Medicaid expan - sion or potentially receive no federal Medicaid financing at all. As a result, they asked the court to rule that the Medicaid expansion itself was unconstitutional. The court responded to this argument in two ways. On one hand, it determined that the Medicaid expansion itself was perfectly consti - tutional; on the other hand, the court ruled that it was indeed unconstitutional for USDHHS to penalize states that did not adopt the expansion by terminating all Medicaid funding: The Constitution simply does not give Congress the authority to require the States to regulate. That is true whether Congress directly commands a State to regulate or indirectly coerces a State to adopt a federal regulatory system as its own.  .  .  . When, for example, such conditions take the form of threats to terminate other significant independent grants, the conditions are properly viewed as a means of pressuring the States to accept policy changes.  .  .  . Nothing in our opinion precludes Congress from offering funds under the Affordable Care Act to expand the availability of healthcare, and requiring that States accepting such funds comply with the conditions on their use. What Congress is not free to do is to penalize States that choose not to participate in that new program by taking away their existing Medicaid funding. (National Federation of Independent Businesses v. Sebelius , Secretary of Health and Human Services, et al., 2012, pp. 2602-2607 ) This twin ruling had the effect of making the ACA Medicaid expansion optional rather than mandatory, and states have been deciding 152 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain activity? Will continuing implementation con - cerns and market forces loom large? And what will be the political fallout, if any, from whatever does or does not happen to the ACA in this Con - gress? In the end, Congress may not make sig - nificant changes to the ACA, and as time passes, the law may become an accepted and welcome part of the fabric that holds together our health - care and public health systems. Until that time comes to pass, however, we discuss here a few major political and implementation issues that will likely dominate the health reform discus - sion in the near term.

Congressional Activity The Republicans gained control of both cham - bers of Congress and of the White House in the 2016 election. After 7 years of campaigning on (and winning with) a platform that included repealing and replacing the ACA, Republican legislators feel a strong obligation to keep their promise. While the party is unified in its op - position to the ACA, it has been less success - ful agreeing on a replacement plan. With a slim majority in the Senate (52 Republicans and 48 Democrats) and no Democrats in the House supporting this effort, Republicans are finding it difficult to meet the demands of moderate Re - publicans who want to protect the ACA’s insur - ance gains and conservative Republicans who want to eliminate as many ACA requirements, regulations, and taxes as possible. Republicans face a similar dilemma in the House, although they have a little more room for disagreement, because they can survive with 21 Republican defectors and still pass a bill without support from the Democrats. Congress spent the better part of the spring and summer in 2017 wrestling with repeal and replacement bills. After much political drama, the House passed their replacement bill, the American Health Care Act of 2017 (AHCA), on May 4, 2017 by a narrow 217–213 margin. Ev - ery Democrat and 20 Republicans voted against the bill. In the Senate, Republicans drafted their bill, the Better Care Reconciliation Act of 2017 The number of new Medicaid beneficiaries will ultimately depend on how many states eventu - ally choose to expand their Medicaid program. The court’s decision drastically changed the blueprint of health reform. The ACA was de - signed assuming Medicaid expansion in every state, meaning that there would be uniform cov - erage across the country for individuals earning below 138% of the federal poverty level. Under this plan, Medicaid would provide insurance for the lowest-income individuals, while state ex - changes (with the assistance of federal subsidies) and employer-sponsored insurance would pro - vide coverage for those who had higher earn - ings. It is now estimated that in states that do not expand their Medicaid program, 2.5 million people with incomes below the poverty line will remain uninsured because their incomes are too high to qualify for the state’s traditional Med - icaid program, yet too low to be able to afford private insurance in the exchanges because they do not qualify for subsidies (because it was as - sumed Medicaid would be expanded nation - ally, premium subsidies are only available for individuals earning at least 100% of poverty) (Garfield, 2016).

▸ Key Issues Going Forward At the time of this writing, the Republican ef - fort to repeal and replace the ACA has stalled, although the individual mandate component has been repealed from the law with the pas - sage of tax reform. Many in the party want to keep working toward that goal. Complicating matters further, President Trump is urging Re - publicans to keeping working on health reform, making it difficult to discern which issues—and which branch of government—will triumph in the coming year. Will Congress significantly change or dismantle the ACA, or will it move on to other policy debates? Will the Trump ad - ministration undermine the ACA through ex - ecutive actions in the absence of congressional Key Issues Going Forward 153 One thing Congress has not tried yet is a bi - partisan approach. A clear majority of the pub - lic (71%) strongly prefers for Republicans and Democrats to work together on health reform, and a number of legislators from both sides of the aisle have indicated a desire to do so. While a partisan divide remains here as well, 41% of all Republicans and 46% of Trump supporters would like to see the parties work together (Kaiser Family Foundation, 2017). After the failed Senate efforts, Sen. Lamar Alexander (R-TN), Chair of the Senate Committee on Health, Education, Labor and Pensions, agreed to open bipartisan hearings on fixing the individual marketplace (Park, 2017). In addition, a group of bipartisan legislators from the House announced a plan to improve the ACA. Their strategy includes paying low-income, cost-sharing subsidies to insurers, providing federal funds to the states to create re - insurance funds and other programs to lower premiums, applying the employer mandate to employers with 500 (instead of 50) or more em - ployees, redefining full-time employee as those who work 40 hours per week, obtaining clari - fication from USDHHS about a §1332 waiver process, and repealing the medical device tax (Lee, 2017). They also recommended offsetting the federal funds spent on these ideas, but did not indicate how current funding should be cut. The political difficulty of repealing and re - placing the ACA is not surprising. It is always difficult to take away benefits once people have started to use them. Supporting a bill that would result in over 20 million people losing insurance is clearly more politically perilous than not sup - porting legislation (i.e., the ACA) that would de - liver health insurance to 20 million people for the first time. This is particularly true for fed - eral legislators who hail from states that (a) im - plemented the ACA’s Medicaid expansion and (b) have Republican governors. Why? Much of the savings from the House and Senate bills came from reduced Medicaid spending, both through the elimination of the expansion and by changing the entire program from an enti - tlement program to a block grant or per cap - ita allotment. In turn, states would either have (BCRA), which followed the same general con - tours of the AHCA. After barely mustering suf - ficient support to proceed with debate on the bill, the Senate voted against BRCA on July 25, 2017. All Democrats and 9 Republicans opposed the bill (Fox, Lee, Mattingly, & Barrett, 2017).

The next day, all Democrats and 7 Republicans also voted against a bill that would have sim - ply repealed the ACA (effective in 2 years) and did not include any type of replacement (Lee & Mattingly, 2017). This repeal-only bill actually passed Congress while President Obama was in office, but because members of Congress who voted for repeal knew that Obama would veto the bill, it was considered a protest vote more than an agreement on a policy position. During the 2017 Senate debate, Sen. John McCain (R-AZ), who at the time had been re - cently diagnosed with aggressive brain cancer, provided a moment of high drama. His “no” vote was the third Republican vote (along with Sens. Lisa Murkowski [R-AL] and Susan Col - lins [R-ME]) that ultimately doomed what was referred to as the “skinny repeal” option (Fox, 2017). The skinny repeal option eliminated just the individual and employer mandates as well as a tax on medical devices. It was a bill that few actually wanted to become law, and it was pro - jected to increase premiums and drastically re - duce the number of insured individuals. Even the senators who voted for the bill did so only after assurances that the House would not pass it. Why, then, move forward with a bill few sup - ported? The goal was to reach a “conference committee” wherein the House and Senate could work to reach a repeal and replace compromise, which would then be sent back to each cham - ber for approval. At that point, the political pres - sure to support a compromise bill would have been immense. The vote for the skinny repeal bill was a vote to keep the health reform debate alive, but risked a result that few desired. In vot - ing against this strategy, the three Republican senators who voted “no” urged their colleagues to move forward in a bipartisan manner and to follow regular order in the Senate (holding hearings, passing bills through committee, etc.).

154 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain through its executive authority. The key question is whether President Trump will follow through on his threat to “let Obamacare fail” with the goal of (a) pinning the collapse on Democrats and (b) forcing Democrats to negotiate with Repub - licans on a repeal and replacement bill (Tillett, 2017). Trump has asserted that “Republicans are not going to own [Obamacare’s collapse],” but because Republicans hold power in Congress and the White House, they may end up being blamed for future healthcare woes (Tillett, 2017). So far, Trump’s actions and indecision on health reform issues have negatively impacted the ACA. On his first day in office, Trump signed an executive order that allowed USDHHS and other agencies to “exercise all authority and dis - cretion available to them to waive, defer, grant exemptions from, or delay the implementation of any provision or requirement of the [ACA] that would impose a fiscal burden” on the states, individuals, or other entities involved in health care (Jost, January 20, 2017). While the specific changes that could take place under this Order are unclear, the intent to free individuals and states from ACA obligations is unmistakable.

The administration also proposed a rule to make it more difficult to sign up for insurance during a special enrollment period, shortened the length of the next open enrollment period, and made it easier for insurers to collect back premiums (Associated Press, 2017; Jost, Janu - ary 20, 2017). In addition, the administration weakened enforcement of the individual man - date by ordering the Internal Revenue Service (IRS) to continue processing tax returns even if filers do not indicate whether they had in - surance coverage (Associated Press, 2017).

Examples of other actions the administration could take include withdrawing the appeal of a lawsuit that could eliminate cost-sharing sub - sidies (discussed more later), granting more hardship waivers to exempt people from com - plying with the individual mandate, limiting advertising and outreach during the next open enrollment period, granting waivers to the states to allow Medicaid-related work requirements or increased cost sharing, rewriting regulations to had to absorb the federal spending reductions in their own budgets or absorb the healthcare costs of having more uninsured residents. In - deed, the proposed changes to Medicaid, which went well beyond repealing and replacing the ACA, resulted in many of the biggest criticisms from moderate Republicans. Also, Medicaid has become even more important to the nation now that it is grappling with an opioid epidemic, be - cause Medicaid and CHIP cover approximately one-third of individuals with an opioid addic - tion. This is nearly double the share covered by Medicaid in 2005 and the increase is mostly due to the ACA Medicaid expansion (Kaiser Family Foundation, n.d.). The Senate Republican leadership also made a difficult political situation even harder by alienating several of their own members when the leadership decided that the ACA repeal bills would be drafted in relative secret, ignored reg - ular process (by not holding hearings, debates, mark-ups), used reconciliation to avoid a filibus - ter, and expected their members to vote on bills they had little time to review. Sen. John Cornyn (R-TX), the second-ranking Republican in the Senate, went so far as to say that knowing prior to the start of debate which bill the Republicans would be voting on was “a luxury we don’t have” (Sullivan, 2017). This was a hard pill to swallow for many Republicans who vilified the Democrats for their partisan approach to passing the ACA and who mocked then–House Speaker Nancy Pelosi (D-CA) for saying, “we have to pass the healthcare bill so that you can find out what’s in it” (Capehart, 2012). While ultimately Repub - lican leaders were not successful in getting the legislation passed, they decided that the nega - tive ramifications of these hardball tactics were easier to survive then the negative publicity of a drawn-out process where opposition groups could mobilize their resources.

The Trump Administration Even if Congress cannot agree on a new health reform bill, the Trump administration wields sig - nificant power over the future of health reform Key Issues Going Forward 155 (Livingston, 2017). Cost-sharing subsidies off - set the cost of care for low-income consumers.

These subsidies have been the subject of litiga - tion brought by House Republicans under the Obama administration. Insurers do not know whether to expect the $7 billion owed to them for providing the subsidies in 2017 or the billions that would be owed to them in future years. The Trump administration decided to end funding for the cost-sharing subsidies and it remains to be seen whether Congress will restore the fund - ing. In addition, other actions, such as not en - forcing the individual mandate and limiting outreach efforts, make it less likely that health - ier individuals will enroll in the plans, resulting in a sicker and more expensive pool. Some insurers are responding to the uncer - tainty by exiting the market, while other insur - ers have increased their offerings (Fise, 2017).

While thousands of enrollees were expected to be in counties in which no insurer is offering a product on their exchange in 2018 (referred to as “bare” counties), there are no longer any bare counties due to recent decisions by insur - ers (with prodding by state insurance agencies) (Levy, 2017). Given the rising premiums and reduced insurance offerings, there is a debate about whether the exchanges are collapsing or stabilizing. While some analyses show a stabiliz - ing market, continued subsidy support and in - creased enrollment of healthier individuals are key factors to the long-term success of the ex - changes (Cox & Levitt, 2017; McKinsey Center for Health System Reform, 2016; Zeitlin, 2017).

ACA Litigation Legal challenges to the ACA did not end with the Supreme Court’s National Federation of In - dependent Business v. Sebelius decision in 2012, and the Supreme Court has handed down rul - ings in other ACA lawsuits. In 2014 the court decided Burwell v. Hobby Lobby , which answered whether, under a federal statute called the Reli - gious Freedom Restoration Act (RFRA), closely held private corporations have a legal right to re - fuse to comply with provisions of the ACA that allow for skimpier benefits under the essential health benefits requirement, and eliminating contraceptives from the list of women’s preven - tive services (Bagely & McIntyre, 2017; Newkirk, 2017; Pear & Abelson, 2017).

Insurance Plan Premium Rates One of the key issues to monitor going forward is the affordability of health insurance plans under the ACA. Most people were pleasantly surprised by premium rates for 2014 and 2015, although there was a lot of variation across the country.

Insurers had incentive to keep premiums low because they wanted to encourage people to en - roll in their health plans. In addition, there was limited information about who would be in the insurance pools that could have assisted insur - ers with premium rate setting, and many plans contracted with a narrower set of providers as a way to keep premiums low. Going into 2018, insurers are facing signif - icant uncertainty due to the political landscape.

With Congress reviewing a variety of repeal and replacement plans and the Trump admin - istration threatening to let ACA reforms fail, insurers do not know what to expect in the up - coming year, and uncertainty is not something that makes for a stable health insurance market.

As a result, insurers are asking for delays in sub - mitting premium rates, and some are even sub - mitting two rates depending on the outcome of certain political decisions (Mangan, 2017). Many insurers that are submitting rates are asking for double-digit increases (a review of silver plans in 8 states showed an average increase of 18% (Adamczyk, 2017), while other rate requests are even higher. For example, insurers in Maryland are asking for rate increases ranging from 18% to 60%, and in Connecticut the range is 15% to 34%. Nevada is requesting an average rate hike of 38%, and Colorado’s request is similar, with an average increase of 41% (Livingston, 2017; Luhby, 2017). The main sources of uncertainty are whether the Trump administration will fund cost-sharing subsidies and enforce the individual mandate 156 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain related to subsidies have faced religious chal - lenges and have yielded a variety of judgments that have and will continue to rise through the court systems. Given these and other lawsuits still to come, it is unlikely that the Supreme Court has cleared the ACA from its docket. However, irrespec - tive of whether the Supreme Court hands down ACA-related cases in the future, what bears keeping in mind is that judicial decisions may continue to shape the contours of the ACA for years to come.

▸ Conclusion After decades of trying and against the predic - tions of numerous experts, the United States passed a health reform law that provides insur - ance coverage on a more universal scale than ever before, includes protections for individ - uals who have been historically excluded from the insurance market, and shows a concern for improving healthcare quality and access to pre - ventive care. From a philosophical perspective, the ACA moves the United States toward a soci - ety where (almost) everyone is expected to have adequate access to affordable health insurance. Under this perspective, health insurance is considered both an obligation and a right: In - dividuals are required to obtain insurance and the government is obligated to make it afford - able and accessible. At the same time, there re - mains, in some quarters, strong philosophical and political opposition to the ACA, which con - tinues to be challenged both legislatively and in the courts. Because of this opposition and be - cause the ACA is still not close to engendering the type of support reserved for Medicare, the full story of the ACA is far from being completed.

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Rosenbaum, S., Teitelbaum, J. & Hayes, K. (2011). Crossing the Rubicon: The impact of the Affordable Care Act on the content of insurance coverage for persons with disabilities. Notre Dame Journal of Law, Ethics & Public Policy , 25(2):527–562. Starr, P. (1982). The social transformation of American medicine: The rise of a sovereign profession and the making of a vast industry . New York, NY: Basic Books. Sullivan, P. (2017, July 20). Cornyn: Knowing health plan ahead of vote is "luxury we don’t have." The Hill. Retrieved from http://thehill.com/policy/healthcare/342980 -cornyn-knowing-health-plan-ahead-of-vote-is-luxury-we-dont-have (accessed July 26, 2017). Tax Policy Center. (2017). What is reconciliation? Tax Policy Center Briefing Book. Retrieved from http://www 160 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain lives, and the federal government has an array of tools to bring the rise of health care costs under control. However, the work toward a high-quality, affordable, accessible health care system is not over.

(Obama, 2016, p. 526) Discussion Question 1 Even though the primary legislative bills to repeal and replace the Affordable Care Act (ACA)—the AHCA and BRCA—did not have sufficient support across U.S. Congress to become law, and some of their provisions may not have been allowed under reconciliation rules, it is worth considering the main features of the bills to understand the type of health reform changes many Republicans support (see TABLE 7-1). Overall, these bills reduced taxes, eliminated government mandates, lowered federal government spending, lowered premiums CASE STUDY The Work Continues: Case Discussion Questions Sara E. Wilensky and Joel B. Teitelbaum When I took office, health care costs had risen rapidly for decades, and tens of millions of Americans were uninsured.

Regardless of the political difficulties, I concluded comprehensive reform was necessary. The result of that effort, the Affordable Care Act (ACA), has made substantial progress in addressing these challenges. Americans can now count on access to health coverage throughout their TABLE 7-1 Comparison of U.S. House and Senate ACA Replacement Bills Provision AHCA (House) BRCA (Senate) Premium tax credits Replaces with tax credits based on age only, not income or geographic area. Keeps tax credits, eligibility lowered to 350%, includes those under 100% FPL, tied to less expensive benchmark, changes individual contribution levels so older consumers pay more. Individual mandate Eliminates penalties; replaces with 1-year 30% premium surcharge if lapse in coverage. Eliminates penalties, replaces with 6-month waiting period if lapse in coverage. Employer mandate Eliminates penalties. Eliminates penalties. Medicaid expansion Phases out by end of 2019. Phases out by end of 2024. ACA taxes Eliminates most key taxes. Eliminates many key taxes, keeps Medicare surtax and investment tax on high-income earners. Essential health benefits Allows state waivers to redefine. Allows state waivers to redefine. (continues) Case Study 161 CASE STUDIES for some people while increasing them for others, phased out the Medicaid expansion under the ACA, and ended Medicaid as an entitlement program. According to the nonpartisan Congressional Budget Office (CBO), the effect of the bills would be to significantly increase the number of uninsured, significantly reduce the deficit, lower costs for young and healthy consumers, and increase costs for older and poorer consumers (Congressional Budget Office, June 26, 2017; Congressional Budget Office, July 23, 2017). Everyone agrees the ACA can be improved. Are there features of these bills that you think have merit? Should states have more flexibility under the ACA? How much of the cost burden should young and healthy individuals bear in order to make Provision AHCA (House) BRCA (Senate) Medicaid program Changes to block grant or per capita allotment in 2020; allows work requirements. Changes to block grant or per capita allotment in 2020; allows work requirements. Cost-sharing subsidy funds Funds through 2019, repeals in 2020. Funds through 2019, repeals in 2020. Women’s health services Defunds Planned Parenthood for 1 year; redefines qualified plan to exclude plans that provide abortion services except for rape, incest, or life of mother in danger. Defunds Planned Parenthood for 1 year; redefines qualified plan to exclude plans that provide abortion services except for rape, incest, or life of mother in danger. Private market rules Keeps guaranteed issue, dependent coverage until 26; preexisting condition protection remains. Keeps guaranteed issue, dependent coverage until 26; preexisting condition protection remains; permits sale of noncompliant plans as long as selling one ACA-compliant plan. State stabilization pool Provides $123 billion over 9 years. Provides $182 billion over 9 years. Public health preven - tion fund Eliminates. Eliminates. Age rating band Changes to 5-to-1 but allows for state variation. Changes to 5-to-1 but allows for state variation. CBO estimate—uninsured 23 million more uninsured by 2026. 22 million more uninsured by 2026. CBO estimate— federal savings $119 billion. $321 billion. TABLE 7-1 Comparison of U.S. House and Senate ACA Replacement Bills (continued) 162 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain CASE STUDIES health insurance more affordable for elderly and sicker individuals?

Discussion Question 2 Are there alternatives to the individual mandate that accomplish the same goals without engendering so much political turmoil? Could policymakers have designed an incentive system that would be as effective as a mandate? What are the pros and cons of using a mandate versus an incentive? Can you think of incentives to encourage enrollment that have occurred in other parts of the healthcare system?

Discussion Question 3 There was a lengthy debate about whether to include a public option in health reform. A public option is some type of government-run health plan that would be available to compete with private plans. A public option could exist within the health exchange model or outside of it. Instead of a public option, Congress voted to require the Office of Personnel Management, which runs the Federal Employees Health Benefit Program, to contract with at least two multistate plans in every state health insurance exchange. What are the pros and cons of having a public option? Does the Office of Personnel Management compromise achieve all or some of the goals of having a public option? Why do you believe the Office of Personnel Management compromise was acceptable to legislators but the public option was not?

Discussion Question 4 Republican policymakers that are involved in bipartisan discussions to revise the ACA are focused on providing states with increased flexibility regarding benefit design, premium pricing, and other features. Although states are generally home to social welfare changes, it is difficult to provide universal health care on a state-by-state basis. If state health reform efforts lead the way, the country could have a patchwork of programs and policies that vary from state to state, with the potential to make health coverage even more complex and inefficient than it is currently. On the other hand, it is also important to recognize that a health reform strategy focusing on states has benefits as well. At its best, state-level reform can be accomplished more rapidly and with more innovation than at the federal level. State legislatures may have an easier time convincing a narrower band of constituents important to the state than Congress has in accommodating the varied needs of stakeholders nationwide. What are the advantages and disadvantages of compromising regarding the state role in the ACA? Is it worth giving up some degree national uniformity and stronger consumer protections in exchange for political stability and allowing state to experiment with health reform design? How well do you think the public will be served in their access to affordable health insurance and access to health care if states have more control? How does your response differ if you are living in California or New York versus Texas or Florida?

Discussion Question 5 A group of friends were talking about the Affordable Care Act (ACA), illustrating the wide-ranging viewpoints about the law. Calvin, whose daughter Mia is struggling to make a living as an artist, is pleased that Mia has health insurance for the first time since graduating from college. Although Mia cannot stay on her parents’ insurance because she just turned 27, she can now afford a good health insurance plan that she found on her state’s health exchange. While Calvin has not noticed much of a change in his own health insurance coverage, which he obtains through his government employer, his friend Katherine is upset about health reform. She does not want the government forcing her to purchase health insurance (although she always chose to be insured in the past), and she recently found out that her old plan was cancelled because it did not meet the law’s requirements. Katherine found several new plan options to choose from, but none had her exact combination of benefits, providers, and price. In addition, Katherine’s uncle, Ethan, is 55 years old and self-employed. He purchases his health insurance on his state’s exchange and because he has preexisting conditions, he is grateful to be able to find a plan. Even so, Ethan’s premiums will increase by 15% this year and his deductible is $5,000, making health care difficult to afford even with insurance. Another friend, Jara, told Katherine she should be willing to pay a little more or change some aspects of her plan to help the millions of people who can now afford insurance for the first time as a result of the ACA. Case Study 163 CASE STUDIES Congressional Budget Office. (2017, July 23). American Health Care Act—cost estimate. Retrieved from https:// www.cbo.gov/system/files/115th-congress-2017-2018 /costestimate/americanhealthcareact.pdf (accessed July 23, 2017). Obama, B. (2016). United States health care reform: Progress to date and next steps. Journal of the American Medical Association, 316 (5), 525–532. doi:10.1001/jama.2016.9797 After witnessing her uncle’s experience, however, Katherine is skeptical that the government is going to be able to keep its promises. What are the competing viewpoints about the ACA exemplified by these friends? Which of these friends’ views will be the most pressing concern going forward in the discussions about the ACA?

References Congressional Budget Office. (2017, June 26). Better Care Reconciliation Act of 2017—cost estimate. Retrieved from https://www.cbo.gov/system/files/115th-congress -2017-2018/costestimate/52849-hr1628senate.pdf (accessed July 26, 2017). 164 Chapter 7 Affordable Care Act (ACA) Reframed and Uncertain CASE STUDIES © Anthony Krikorian/Shutterstock Healthcare Quality Donna Middaugh OBJECTIVES ■ Explain relevant theories of error as they relate to patient care. ■ Apply effective error management techniques from aviation and industry to the healthcare delivery system. ■ Identify examples of quality care initiatives to reduce costs while improving patient safety and outcomes that are cost driven. ■ Discuss the role of quality care mandates from regulatory agencies. ■ Analyze the impact of national initiatives on quality care performance and outcomes. OVERVIEW This chapter presents an overview of human error, error theory, quality improvement, and the application of quality improvement concepts to healthcare delivery. Error measurement tools and injury prevention models are applied across healthcare settings. Public reporting systems and regulatory agency requirements are analyzed in conjunction with nursing performance measures.

National initiatives and their impact on quality care are explored. In 2015, the overall share of the U.S.

economy devoted to healthcare spending was 17.8%, amounting to $3.2 trillion (Centers for Disease Control and Prevention, 2017). Healthcare costs only accelerate with the aging of the population and its increased dependence on federal and state financing of health care. Yet despite our high national spending, health care in the United States is uneven in quality and is often wasteful, uncoordinated, and inefficient (Bipartisan Policy Center, 2013). 165 CHAPTER 8 ▸ Quality Care and Public Policy Above all, do no harm. —Hippocratic Oath Public belief and trust in the healthcare sys - tem was shaken in 1999 when the Institute of Medicine (IOM) reported that between 44,000 and 98,000 Americans die each year as a result of medical errors (Kohn, Corrigan, & Donald - son, 2000). The November 1999 report of the IOM, published in a book titled To Err Is Hu - man: Building a Safer Health System , alerted healthcare institutions and professionals to the true scope of the quality problem (Kohn, Corri - gan, & Donaldson, 2000). The reality is that er - rors occur across the healthcare sector, including clinics, physicians’ offices, pharmacies, homes, nursing homes, and hospitals. Every d a y, Americans expect to receive high-quality health care to maintain or restore their health and well-being. Unfortunately, every day thousands of Americans are exposed to un - equal care and quality, and are injured or die in the course of treatment. For example, a hospital study conducted in New York state found that 3.7% of patients experienced adverse events:

12.6% of those events led to death, and 2.6% led to permanent disability. One-fourth of the events resulted from negligence (Agency for Healthcare Research and Quality [AHRQ], 2002). The IOM, now known as the National Acad - emies of Medicine, released its staggering report on medical errors more than 17 years ago. It es - timated that the United States lost more patient lives to safety incidents every 6 months than it did in the entire Vietnam War (Kohn, Corri - gan, & Donaldson, 2000). Statistics indicate that more deaths occur in the United States each year from medical errors than from motor vehicle ac - cidents, breast cancer, or acquired immunode - ficiency syndrome (AIDS). Put in other terms, medical errors, if documented by the Centers for Disease Control and Prevention (CDC), would rank as the third leading cause of death in the United States (Makary & Daniel, 2016).

Today the numbers of medical errors are stag - gering. As many as 400,000 Americans succumb to medical errors annually. Another 10,000 suf - fer complications daily. The total cost of these errors is estimated at between $17 billion and $29 billion per year (Medcom, 2017). Medical errors are costly, leading to loss of trust within the healthcare system, decreased patient satis - faction, and degraded morale among health - care professionals. The U.S. Food and Drug Administration (FDA) has estimated that medication errors cause at least one death every day and injure approximately 1.3  million people annually in the U.S. (FDA, 2016). When one considers the billions of medications that are prescribed at clinics and physician offices and taken home, it is staggering to think of the possible scope of error. All medication mistakes may and must be preventable. Healthcare providers, the public, and fed - eral and state governments have investigated the facts and sought answers as to why these errors are so prevalent. A report published in 2013, American Hospital Quality Outcomes 2014: HealthGrades Report to the Nation , fo - cused on the performance of more than 4,500 U.S. hospitals and covered 31 of the most common inpatient procedures and conditions during 2010 to 2012. The report showed that hospitals, physicians, and patients each have a role to play and each group must take specific actions to help improve quality outcomes at lower costs. The report identifies the follow - ing (HealthGrades, 2013):

■ Quality disparities persist within hospitals among different procedures and conditions, as well as among hospitals within local service areas. ■ Patient complications and mortality in hospitals increase direct costs. ■ The use of minimally invasive surgical techniques may hold promise for reducing mortality and length of stay. 166 Chapter 8 Healthcare Quality Hospitals have a moral and ethical impera - tive to improve their patient care outcomes, fo - cus on quality, and strive for excellence in safety, quality, and overall performance. The 2014 HealthGrades report demonstrates that there is significant variation in hospital outcomes, even after accounting for patients’ severity of illness and population demographics. This translates into the fact that physicians should stay current on the latest approaches and techniques, perform procedures that have been shown to have lower complication and mortality rates, and use refer - ral networks with surgeons who are trained in minimally invasive surgery options when appro - priate. Patients should use quality performance data to make informed choices by finding out about the performance of hospitals based on complication and mortality rates. They should also be aware of the variation in direct costs in - curred by hospitals, which are passed on to the consumer in the form of higher premiums, de - ductibles, and copays. The HealthGrades report highlights the connection between higher com - plication rates and increased costs. Choosing Wisely is an initiative of the Amer - ican Board of Internal Medicine (2017) that aims to promote conversations between health - care providers and patients. Their purpose is to help patients select care that is evidence based, not duplicative of tests or procedures they al - ready received, and to receive care that is free from harm and is truly necessary. The Choos - ing Wisely website (www.choosingwisely.org) identifies a list of common tests and procedures from medical specialty organizations to em - power the public to start conversations about what is appropriate care.

▸ Human Error Errors may occur in all phases of healthcare delivery. Diagnostic errors may occur with im - proper testing, misread or misinterpreted lab - oratory results, or failure to act on the results.

During patient treatment, technical errors may result in the inaccurate preparation or delivery of treatments. Treatment can be delayed, missed, or performed incorrectly. A medical error might mean the healthcare provider chose an inappro - priate method of care, or the provider chose the right course of care but carried it out incorrectly (Nordenberg, 2000). Medical errors are not pur - poseful or reckless actions that are intended to harm a patient (Liang, 2001), and errors do not always result in harm. Adverse events, on the other hand, do imply harm to an individual. Throughout the literature, the term error is used to denote a mistake, close call, near miss, or active or latent error. Active errors occur at the level of the frontline provider—for example, ad - ministering the wrong medication. Active errors are limited in time and space, so they are easier to measure. Latent errors involve system defects, such as faulty maintenance on equipment, poor design, or inadequate staffing. Latent errors are more difficult to measure because they occur over greater periods of time and space and be - cause they may exist for a long time before they lead to an error or adverse event (Thomas  & Petersen, 2003).

Error Settings The use of outpatient settings, including phy - sician offices, has risen dramatically. Hospitals are operating with fewer beds or closing outright to make way for new ambulatory care centers (Medcom, 2017). The shift to outpatient care is accelerating with new technology and better drugs allowing patients to receive treatment out - side of hospitals. Even though the majority of health care takes place in the outpatient setting, efforts to improve safety have mostly focused on the inpatient setting. The nature of interactions between caregivers and patients can be a source of errors, particularly when multiple caregivers are involved. Medication errors are common in ambulatory care, with one study finding more than 4.5  million ambulatory care visits occur annually due to adverse drug events (Sarkar, López, Maselli, & Gonzales, 2011). Errors may occur during routine visits or during outpatient surgery procedures. Human Error 167 ■ Administering ■ Monitoring Common causes of medication errors in - clude poor communication; poor procedures or techniques; ambiguities in product names, directions for use, or medical abbreviations or writing; and patient misuse because of misunder - standing (FDA, 2016). Additional causes may be related to job stress, lack of product know - ledge or training, or similar labeling or packag - ing of a product.

Error Theory Human error has been studied extensively by James Reason (2000), who identified two ap - proaches to the problem of human error: the person approach and the system approach.

A person approach concentrates on the un - safe acts of individuals, which usually result in blame for forgetfulness, inattention, or moral weakness. A systems approach focuses on the conditions under which the person works and assumes that humans are fallible and errors are to be expected. Errors are then viewed as con - sequences rather than causes. The person approach has been the tradi- tion in medicine, blaming someone for having made an unsafe choice of behavior (Reason, 2000). Shame and blame have been the method traditionally used by the medical profession to reduce medical errors. The person approach shames an individual into believing that his or her error denotes lack of professionalism and incompetence. The culture of blame seems to be reinforced throughout the education and training of phy - sicians. Clinicians are led to believe that errors are caused by carelessness. This combined with the public’s and media’s quick-to-blame men - tality results in fear of both making a mistake and being caught (Weinberg, 2002). There are experts who argue that in complex environ - ments that undergo constant change, such as our healthcare environment, complete elimin - ation of all error will never be possible (Ebright, Urder, Patterson, & Chalko, 2004). Nursing Errors Woods and Doan-Johnson (2002) developed a classic taxonomy of nursing errors with pre - vention as the goal. To achieve this goal, they identified eight categories of errors, all of which include system, individual, and practice contri - butions. It is unclear whether the Practice Break - down Research Advisory Panel studied subjects from all levels of nursing, including registered nurses and nurse practitioners; however, the fol - lowing eight categories of nursing errors can be applied to all levels of nursing practice (Woods & Doan-Johnson, 2002):

■ Lack of attentiveness ■ Lack of agency or fiduciary concern ■ Inappropriate judgment ■ Medication errors ■ Lack of intervention on the patient’s behalf ■ Lack of prevention ■ Missed or mistaken patient orders ■ Documentation errors Lack of attentiveness can be caused by system-level problems, such as understaffing or fluctuations in patient acuity, and it often trans - lates into lack of monitoring. Patient safety de - pends on attentiveness to both predictable and unpredictable conditions. Agency concern is defined as the moral agency of the nurse or his or her trustworthiness in working for the patient’s and family’s best in - terest. Moral agency is lacking when nurses do not advocate for the best interests of their cli - ents. Failing to question an order, failing to call a physician for consultation, failing to heed a pa - tient or family request for assistance, and breach of confidentiality are examples of lack of fidu - ciary concern. These can all contribute to caus - ing harm to the patient. The U.S. Food and Drug Administration (FDA, 2016) identified that medication mis - haps can occur anywhere in the medication dis - tribution system:

■ Prescribing ■ Repackaging ■ Dispensing 168 Chapter 8 Healthcare Quality seeks to identify factors that give rise to human error and to then change the underlying sys - tem of care to reduce the occurrence of errors.

Reason promoted the idea that human error is inevitable, especially in such complex systems as health care. Expecting flawless performance from human beings working in high-stress, complex environments is unrealistic. The sys - tems approach promotes efforts to catch human errors before they occur or block them from causing harm, which will be more fruitful than approaches that seek to create flawless provid - ers (PSNet, June 2017a).

Error Management Reason (2000) believes that error management has two dimensions: limiting the occurrence of dangerous errors, and creating systems that are better able to tolerate errors and contain their damaging effects. He argues that there are high-reliability organizations that operate in haz - ardous conditions yet have few adverse events.

He proposes that systems in health care should be modeled after these high-reliability organi - zations, such as U.S. Navy nuclear aircraft carri - ers, nuclear power plants, and air traffic control centers (Reason, 2000). These organizations anticipate the worst and equip themselves to deal with the worst at all levels. This literally means asking individuals in these systems to remain chronically uneasy, yet the culture of these high-reliability orga - nizations provides employees with reminders and tools to help them remember to be afraid.

They have created a culture that makes their system as robust as practicable in the face of both human and operational hazards. Char - acteristics that allow high-reliability organiza - tions to accomplish this include the following (Reason, 2000):

■ Being internally dynamic, complex, and interactive ■ Performing exacting tasks under time pressure ■ Carrying out demanding activities with low incident rates Reason’s theory of error has been used by airlines, railroads, nuclear power plants, finan - cial management companies, and the military (Wachter & Shojania, 2004). Reason’s research led him to develop a model of system accidents.

High-technology systems, such as health care, have many defensive layers. These can include technological barriers (alarms, automatic shut - downs, etc.), people (surgeons, nurses, etc.), and procedures or administrative controls. The function of these layers is to protect victims and assets from hazards. In an ideal world, each de - fensive layer would be solid and intact. Reason (2000) emphasizes that, by nature, there are always weaknesses or holes in these layers, making them similar to Swiss cheese.

He calls this a Swiss Cheese Model for latent errors. Each slice of cheese represents a safety defense or system, which can have either small holes or large holes. Each hole allows errors to penetrate—the larger the hole, the more errors get through. Reason (2000) argues that when these holes in the cheese align, a number of slips can oc - cur so an error finally reaches the patient. The presence of holes in one layer does not normally cause an adverse event, but these holes are con - stantly opening and shutting. This allows mis - takes or errors to slip through, hopefully to be caught by the next layer. Adverse events can happen only when the holes in many layers mo - mentarily line up to permit a trajectory of acci - dent opportunity, which brings the hazards into contact with victims (Reason, 2000). These holes arise because of active failures or latent condi - tions. This suggests the need for a systems per - spective toward patient safety. The Agency for Healthcare Research and Quality (AHRQ) states that medicine has tradi - tionally treated errors as failings on the part of the individual providers, reflecting poor knowl - edge or skill (PSNet, June 2017a, p. 1). The sys - tems approach takes the contrasting view that most errors reflect predictable human failings in the context of poorly designed systems. So, rather than focusing on corrective efforts of pun - ishment or remediation, the systems approach Human Error 169 ■ Human problems ■ Patient-related issues ■ Organizational transfer of knowledge ■ Staffing patterns/work flow ■ Technical failures ■ Inadequate policies and procedures Rivers, Swain, and Nixon (2003) looked at whether the safety techniques used in aviation could be applied to the healthcare delivery sys - tem. To test this idea, an aviation training team implemented 12 hours of error-reducing skills training for operating room personnel. The find - ings revealed a significant effect on the behaviors of operating room staff. Specific error-reducing behaviors resulted in more effective, efficient communication among team members, a 50% decrease in surgical count errors, early identifica - tion of potential red flags, standardized checklists and protocols, fewer delays in procedures, and savings in time and resources for the operating room as a whole (Rivers, Swain, & Nixon, 2003).

Error Management in Healthcare Settings Preventable adverse events can occur in any healthcare setting despite the best intentions.

The National Quality Forum and the Agency for Healthcare Research and Quality (AHRQ) to - gether have identified 30 safe practices that evi - dence shows can work to reduce or even prevent adverse events (AHRQ, 2005). These 30 prac - tices have been endorsed by the National Qual - ity Forum, which includes 215 of the nation’s leading healthcare providers, purchasers, and consumer organizations. All healthcare practi - tioners and organizations are strongly urged to adopt these practices to reduce the risk of harm to patients. The 30 practices are grouped under five major categories:

■ Creating a culture of safety ■ Matching healthcare needs with delivery capabilities ■ Facilitating information transfer and clear communication ■ Managing complex, demanding technologies to avoid major failures ■ Maintaining the capacity to meet periods of peak demand Medical Errors and Aviation Research on the factors that cause human error has been in existence since the 1940s.

Some of the early studies involved aviation.

The IOM’s 2000 report noted that the number of Americans who die each year as a result of medical errors is the equivalent of more than 230 full jumbo jets crashing each year (Kohn, Corrigan, & Donaldson, 2000). Today, with over 54 million flight hours annually, the number of airline fatalities has fallen to 250 per year.

Yet, compared to health care, 200,000 prevent - able fatalities per year equals almost 3 fatal air - line crashes per day (Kapur, Parand, Soukup, Reader, & Sevdalis, 2015). The aviation and nuclear power industries learned long ago not to rely on human perfection to prevent acci - dents. Experts have tried to assure the public that the United States healthcare system is safe despite the IOM statistics; however, compared to the complex aviation industry, the health - care system is not safe. Aircraft accidents are infrequent, but when they occur, they often involve a massive loss of life and therefore gain world attention. Avia - tion accidents immediately stimulate an enor - mous, exhaustive investigation into the causes and needed remedial action. Adverse events in health care, on the other hand, involve individ - ual patients and seldom receive even local, let alone national, publicity. There is no standard - ized method of investigation or remedial action; however, healthcare systems must use methods of examining the cause of errors, such as root cause analyses. The AHRQ Patient Safety Initiative (AHRQ, 2003) identified the most common root causes of medical errors:

■ Communication problems/failure ■ Inadequate information flow 170 Chapter 8 Healthcare Quality transitions, which cause two-thirds of deaths and serious injuries. 2. Bring in the pharmacists to take part in hospital patient rounds. This could decrease errors by 45%. 3. Get serious about infection by requir - ing hospitals to continually adhere to CDC guidelines for disinfecting. 4. Fight diagnostic error by bringing in other physician specialists (i.e., pathologists and radiologists) to help diagnose. 5. Make electronic health records in - teroperable. Currently, only 14% of clinicians share patient data beyond their care organizations. (Lieber, 2016, pp. 1–2). ▸ Patient-Centered Care One principle for transforming health care is patient-centered care. Dupree, Anderson, and Nash (2011) believe that health care should be designed around the interests and needs of pa - tients and their families. The most crucial ele - ment is patient safety, where no deaths or injuries would occur due to preventable errors. Patients and their families have the best knowledge about their conditions, the evolution of symptoms, and response to treatments. In short, bring the patient and the family more deeply into care conversations.

Institute for Healthcare Improvement Mathews (2013) states that today’s healthcare system is still dominated by a fee-for-service system, which results in inefficiencies—namely, high service volume and unnecessary care. These are a detriment to quality. To address this, the Institute for Healthcare Improvement (IHI) de - veloped a framework called Triple Aim. It de - scribes an approach to optimizing health system ■ Providing specific settings or processes of care ■ Increasing safe medication use (AHRQ, 2005) All of the 30 recommended safe practices can be used by physicians and nurses. Of par - ticular relevance to nurses are the safe practices that relate to communication with other health - care providers and patients, and thorough reg - ular evaluation and monitoring of clients for change in health status or risk of complications.

Strategies for Error Management The American Society of Anesthesiologists was one of the first groups to adopt specific error-reduction strategies. Their clinical prac - tice guidelines and system improvements have significantly reduced anesthesia-related mor - tality (Spath, 1999). The risk management and error-reduction strategies listed here have been successfully applied in numerous industries.

Spath suggests that these system and task re - designs could serve as the basis for improving quality in healthcare delivery as well:

■ Improve information access: Information should be readily available to all who need it. ■ Reduce reliance on memory: Checklists, computerized decision aids, and protocols can minimize the need for reliance on human memory. ■ Error-proof processes: Critical tasks should be structured so that errors cannot be made. ■ Standardize tasks: Tasks are to be done in a standardized process. ■ Reduce the number of handoffs: Processes and procedures should be restructured to minimize the number of people who are involved in transferring materials, infor - mation, people, instructions, or supplies.

James Lieber, author of the 2015 book Killer Care: How Medical Error Became America’s Third Largest Cause of Death and What Can Be Done About It has identified five reforms that could make hospitals less deadly. 1. Adopt structured handoffs to reduce miscommunication during care Patient-Centered Care 171 The AHRQ Patient Safety Network (2017) has identified several methods that can be used for measuring patient safety events: 1. Retrospective chart review. This is considered the gold standard but can be costly, labor intensive, and data limited. 2. Voluntary error reporting. This method is useful for internal quality improvement, but many healthcare providers do not self-report errors. 3. Automated surveillance. This can be used both prospectively and retrospectively, but is reliant upon electronic data to run. 4. Administrative/claims data (e.g., AHRQ Patient Safety Indicators).

This method is low cost and can track events over time but may lack detailed clinical data. 5. Patient reports. These can capture errors that are not captured by other methods (i.e., errors in communi - cation) but there are no standard measurement tools. ▸ Agency for Healthcare Research and Quality The AHRQ is the health services research di - vision of the U.S. Department of Health and Human Services (USDHHS). It works in con - junction with the biomedical research mis - sion of the National Institutes of Health (NIH).

AHRQ research endeavors center around the following:

■ Quality improvement and patient safety ■ Outcomes and effectiveness of care ■ Clinical practice and technology assessment ■ Healthcare organization and delivery systems ■ Primary care (including preventive services) ■ Healthcare costs and sources of payment performance through three aims (Institute for Healthcare Improvement, 2013): 1. Improve the patients’ experience of care. 2. Improve the health of populations. 3. Reduce the per capita cost of health care. Organizations that attain the Triple Aim will have healthier populations, in part because of new designs that better identify problems and solutions further upstream and outside of acute health care. Patients can expect less complex and more coordinated care. Businesses will have the opportunity to be more competitive with sta - bilization or reduction of the per capita cost of care for populations.

▸ Error Measurement Tools The abundance of scientific articles and news accounts of medical errors and adverse events have stimulated great efforts and research geared toward identification, measurement, and man - agement of errors and adverse events (Kohn, Corrigan, & Donaldson, 2000). Garrouste-Orgeas, Philippart, Bruel, Max, Lau, & Misset (2012) offer two basic approaches to the evaluation and im - provement of quality of care. The Plan-Do-Act Cycle (PDAC) from the IHI involves identify - ing the problems, devising plans to correct the problems, and assessing the effectiveness of the plans. The second way to measure safety is use of a monitoring system that detects problems and evaluates them using quality indicators. Specif - ically, at the hospital level, the following report - ing systems are available:

■ The medical review, targeting select indicators ■ Voluntary reporting. A method most often used to detect errors ■ Direct observation at the bedside ■ Learning directly from patient experiences of care (pp. 2–3) 172 Chapter 8 Healthcare Quality garnered much attention and research. Failure to rescue occurs when healthcare providers do not recognize signs and symptoms of impend - ing arrest and fail to take appropriate action to stabilize the patient (Garvey, 2015). “Failure to rescue is a major cause of mortality in acute care settings . . . and nurses hold a significant key to addressing this issue” (Garvey, 2015, p. 145).

Al-Qahtani and Al-Dorzi (2010) identified that failure to rescue is due to failure of the organ - ization, lack of knowledge, failure to appreciate clinical urgency, lack of supervision, and failure to seek advice. It is estimated that adverse events occur in 10% of hospitalized patients with a mor - tality rate of 5% to 8%, half of which are prevent - able. Although the concept of failure to rescue a patient is not new, AHRQ research suggests that it is a sensitive indicator of both the quality and quantity of nursing care (Simpson, 2004).

▸ National Database of Nursing Quality Indicators The National Database of Nursing Quality Indica - tors (NDNQI) is a repository for nursing-sensitive indicators developed by the American Nurses Association and managed by the University of Kansas School of Nursing. More than 1,200 hospitals across the United States participate, volunteering unit-level data measures quar - terly (Kurtzman & Jennings, 2008). The NDNQI nursing-sensitive indicators are designed to be a sign of the structure, process, and outcomes of nursing care. Structure is indicated by the avail - ability of nursing staff, skill level of nurses, and education and certification of nursing staff. Process indicators measure assessment, intervention of patient care, and registered nurse job satisfac - tion. Outcomes measured for nursing sensitivity are those that improve if there is a greater quan - tity or quality of nursing care. These might include patient falls, intravenous infiltrations, Quality improvement is a comprehensive process and includes how people get access to health care, how much that care costs, and what happens to patients during that care. The ulti - mate goal is to improve patient safety. The AHRQ was established in 1989 to spearhead efforts to boost the quality of health care in the United States and to fund research on the comparative effectiveness of interventions. As a result of the 2009 American Recovery and Reinvestment Act, $473 million was invested in research supported by AHRQ (Kuehn, 2012). Comparative effective - ness research (CER) is a tool that generates and synthesizes evidence that compares benefits and harms of different interventions and strategies to prevent, diagnose, treat, and monitor health conditions and to improve the delivery of care (Largent, 2011). The goal is to determine which interventions are most effective for which pa - tients and thereby enable consumers, practi - tioners, and policymakers to develop informed decisions to improve population health. AHRQ developed the Guide to Patient and Family Engagement in Hospital Quality and Safety , which is an evidence-based resource to guide hospitals and families to improve quality and safety. The guide describes critical opportu - nities for hospitals to engage patients and fami - lies and to create partnerships between patients, families, and hospitals around the same goals. It also addresses real-world challenges and helps hospitals engage patients and families. This, in turn, helps hospitals improve quality and safety and helps them respond to healthcare reform and accreditation standards (AHRQ, 2013a).

▸ Patient Safety Indicators The AHRQ continues to develop patient safety in - dicators, which are tools to help healthcare agen - cies identify potential adverse events that occur during hospitalization. Failure to rescue is one of the AHRQ patient safety indicators that has National Database of Nursing Quality Indicators 173 be reported to the profession or appropriate li - censing body. This is to ensure that there will be some form of investigation and discipline for conduct or service below standards. Health - care providers who witness negligent care share in the guilt if they refuse to speak out about it.

Reasons why physicians may want to stay silent about errors by their peers include depending on each other for business. Breaking the code of silence may cause a loss of referrals and fi - nancial penalties (Allen, 2013). Physicians may also be wary of being sued or causing a colleague to face legal consequences. By definition, pro - fessionals self-regulate their practice, which re - quires a protective system for the society they serve. This concept is not unique to physicians.

It is essential for all professionals, including ad - vanced practice nurses. Self-regulation allows for mutual obligations shared between health - care providers and society.

Sorry Works! Coalition The Sorry Works! coalition began in 2005 and is composed mostly of doctors, insurers, lawyers, and patient advocates (Sorry Works!, 2013). The organization advocates that full disclosure and apologies for medical errors are a “middle-ground solution” to the medical malpractice crisis (Sorry Works!, 2013, p.1). It is surmised that apologies for bad outcomes, adverse events, or medical errors, combined with upfront compensation, help to reduce the anger of patients and fami - lies. The healthcare providers apologize to the patient and family, admit fault, provide an ex - planation of what happened and how the hos - pital will fix the procedures so the error is not repeated, and make a fair offer of upfront com - pensation (Wojcieszak, Banja, & Houk, 2006).

This approach is taken only after a root-cause analysis shows that the standard of care was not met. It is hoped that this, in turn, will lead to a reduction in medical malpractice lawsuits and associated defense litigation expenses. If the standard of care was met or if there was no medical error or negligence, the provid - ers still meet with the patient and family and their pressure ulcers, and so forth (American Nurses Association, 2009). In 2014, Press Ganey acquired the NDNQI database. Recently, the NDNQI has worked in conjunction with the National Quality Forum and The Joint Commission, using their nursing-sensitive indicators.

▸ National Error-Reduction Efforts The Code of Silence A serious question is why the statistics of the IOM 2000 report were such a shock to people.

Part of the answer is that fear of being sued sup - presses discussion of medical errors. If proce - dures are done with the best intentions and skill, yet something does not turn out the way it was supposed to, the doctor often has to compen - sate the patient with a huge settlement. Patients have a desire for full disclosure of errors, which should incorporate:

■ Disclosure of all harmful errors ■ An explanation as to why the error occurred ■ How the errors effects will be minimized ■ Steps the physician and organization will take to prevent recurrences ■ An apology (PSNet, June 2017b) Data indicate that patients are less likely to sue if physicians apologize and fully disclose er - rors (PSNet, June 2017b). In practice, however, many providers fail to clearly explain the error and its effects on the patient’s health. Currently, 10 states mandate disclosure of unanticipated outcomes to patients. Many patients harmed by a medical error never learn of the error (PSNet, June 2017b).

Physicians may shy away from discussing er - rors with patients due to fear of precipitating a malpractice lawsuit and embarrassment with the disclosure process. All professional codes of conduct require that breaches of professional behavior by colleagues 174 Chapter 8 Healthcare Quality ■ Know what medications you take and why you take them. ■ Use a hospital or clinic that has been care - fully checked out. ■ Participate in all decisions about your treatment (The Joint Commission, 2016).

Brochures and posters titled “Things You Can Do to Prevent Medication Mistakes” were mailed to the nation’s Fortune 1000 companies because The Joint Commission believes employ - ers have a crucial role in developing informed healthcare consumers among their employees.

National Patient Safety Goals Quite a few years ago, through the AHRQ, the federal government adopted the term patient safety (Kohn, Corrigan, & Donaldson, 2000). Patient safety endeavors are crucial components of quality improvement and risk management activities in healthcare institutions. The Joint Commission has developed a set of National Patient Safety Goals (NPSGs) to help organi - zations address explicit areas of patient safety.

Beginning January 1, 2003, all healthcare or - ganizations accredited by The Joint Commis - sion were required to demonstrate how they met the first six Joint Commission NPSGs. The Joint Commission has revised and expanded the NPSGs, which have been identified for the fol - lowing specific healthcare arenas:

■ Ambulatory health care ■ Behavioral health care ■ Critical access hospitals ■ Home care ■ Hospital ■ Laboratory ■ Nursing care center ■ Office-based surgery (The Joint Commission, 2017) In June 2013, The Joint Commission ap - proved a new NPSG, 06.01.01, on clinical alarm safety for hospitals and critical access hospitals. All these goals focus on problems in healthcare safety in hospital settings and how to solve them. The 2017 hospital NPSGs are summarized in BOX 8-1 . attorney to explain what happened, apologize, and offer empathy. They do not admit fault or provide compensation or offer to settle any claim. These protocols are based on a disclosure program de - veloped at the Veteran’s Administration Hospi - tal in Lexington, Kentucky (Wojcieszak, Banja, & Houk, 2006). It is expected that this approach will spread to all healthcare organizations com - mitted to creating a culture of safety and quality.

Safety Culture The Institute for Safe Medical Practices reported that 40% of clinicians either keep quiet or re - main passive after witnessing an improper pa - tient care event to avoid possible reprisals (Nurse.

com, 2012). In 2012 the National Association for Healthcare Quality (NAHQ) issued a “Call to Action” for Enhancing Health Care Quality and Patient Safety. This initiative is designed to en - hance overall quality of care, strengthen patient safety protection, and minimize costly medical errors. The call to action asks healthcare pro - vider organizations to expect all clinical staff to be accountable for achieving meaningful qual - ity improvements and to report potential safety risks. This helps create a strong safety culture in healthcare organizations, which will enhance best practices, improve quality, improve safety reporting, and protect staff. The NAHQ joined with more than 10 national organizations to de - velop recommendations.

Speak Up Campaign The Joint Commission initiated a new national Speak Up patient safety program in 2002, which urges Americans to take an active role in avoid - ing medication errors at the doctor’s office, phar - macy, hospital, and clinic. The acronym Speak Up stands for:

■ Speak up if you have questions or do not understand. ■ Pay attention to the care you get. ■ Educate yourself about your illness. ■ Ask a trusted family member or friend to be your advocate. National Error-Reduction Efforts 175 in response to lagging performance, mounting healthcare costs, and misaligned reimbursement systems (Kurtzman & Jennings, 2008).

Hospital Consumer Assessment of Healthcare Providers and Systems The Centers for Medicare & Medicaid Services (CMS) partnered with AHRQ to develop the Hospital Consumer Assessment of Healthcare ▸ Public Quality Reporting Systems Since the 2000 IOM report about medical errors, there have been considerable attempts to hold healthcare providers accountable for the qual - ity of care. To accomplish this, an abundance of national policies, performance measurement tools, and public and private reporting mech - anisms have been put into place. The effort to hold healthcare providers accountable has come BOX 8-1 2017 Hospital National Patient Safety Goals 1. Improve the accuracy of patient identification.

• Use at least two patient identifiers when providing care, treatment, and services.

• Eliminate transfusion errors related to patient misidentification. 2. Improve the effectiveness of communication among caregivers.

• Report critical results of tests and diagnostic procedures on a timely basis. 3. Improve the safety of using medications.

• Label all medications, medication containers, and other solutions on and off the sterile field in perioperative and other procedural settings.

• Reduce the likelihood of patient harm associated with the use of anticoagulant therapy.

• Maintain and communicate accurate patient medication information. 4. Reduce the harm associated with clinical alarm systems.

• Improve the safety of clinical alarm systems. 5. Reduce the risk of health care–associated infections.

• Comply with either the current Centers for Disease Control and Prevention or the World Health Organization hand hygiene guidelines.

• Implement evidence-based practices to prevent health care–associated infections due to multidrug-resistant organisms in acute care hospitals.

• Implement evidence-based practices to prevent central line–associated bloodstream infections.

• Implement evidence-based practices for preventing surgical-site infections.

• Implement evidence-based practices to prevent catheter-associated urinary tract infections. 6. The hospital identifies safety risks inherent in its patient population.

• Identify patients at risk for suicide. 7. Prevent mistakes in surgery.

• Conduct a preprocedure verification process.

• Mark the procedure site.

• A time-out is performed before the procedure. Data from The Joint Commission. (2017). National Patient Safety Goals Effective January 2017. Retrieved from https://www.jointcommission.org /assets/1/6/NPSG_Chapter_HAP_Jan2017.pdf 176 Chapter 8 Healthcare Quality to take respondents an average of 7 minutes to complete. The survey contains 18 patient per - spectives on care in 8 key topics: communica - tion with doctors, communication with nurses, responsiveness of hospital staff, pain manage - ment, communication about medicines, dis - charge information, cleanliness of the hospital environment, and quietness of the hospital en - vironment. It also includes four screener ques - tions and five demographic items. The NPSGs have become a critical method by which The Joint Commission promotes and enforces major changes in patient safety. The criteria used for determining the value of these goals are based on the merit of their impact, cost, and effectiveness (AHRQ, 2013b).

▸ Centers for Medicare & Medicaid Services CMS Reporting Hospital Quality Data for Annual Payment Update CMS collects 30 quality measures as part of its Hospital Inpatient Quality Reporting Program for the Annual Payment Update determina - tion process. This program requires hospitals to submit data for specific quality measures for health conditions that are common among people with Medicare and that typically result in hospitalization. The initiative is designed to furnish consumers with quality of care in - formation so they can make more informed decisions about their health care. It is also de - signed to encourage clinicians and hospitals to improve the quality of inpatient care provided to all patients.

Preventable Complications Section 3008 of the Affordable Care Act estab - lished the Hospital-Acquired Condition (HAC) Reduction Program to encourage hospitals to reduce these conditions (QualityNet, 2017). Providers and Systems (HCAHPS). Data sub - mitted to the HCAHPS data warehouse are ana - lyzed by CMS, which then calculates the hospital HCAHPS scores and publically reports them on the Medicare website (www.medicare.gov /hospitalcompare/search.html) (Medicare, 2014).

In 2013, the HCAHPS scores were one of 13 measures used by CMS to calculate $850 million in payments from its Hospital Value-Based Pur - chasing Program. Inpatient hospitals will see a 1% reduction in their Medicare payments, which will be used to fund incentives that must be earned back by hospitals on the basis of their quality of care (Kennedy, Craig, Wetsel, Reimels, & Wright, 2013). The HCAHPS survey is a standardized instrument and methodology that was devel - oped in 2006 to measure patients’ perspec - tives of hospital care. This provides a national standard for collecting and reporting infor - mation to the public that allows valid com - parisons of hospitals to enhance consumer decision making. BOX 8-2 lists the HCAHPS goals for the survey. The HCAHPS survey contains 27 items and is available in five languages. It is designed BOX 8-2 HCAHPS Survey Goals HCAHPS has three broad survey goals:

1. The survey will produce comparable data on patients’ perspectives of care to allow objective comparisons among hospitals on topics that are important to consumers. 2. Public reporting of the survey results is designed to create incentives for hospitals to improve quality of care. 3. Public reporting serves to enhance public accountability in health care by increasing transparency (HCAHPS, 2017). Data from Centers for Medicare & Medicaid Services. (2018). CAHPS® Hospital Survey. Retrieved from http://www.hcahpsonline.org /#Background Centers for Medicare & Medicaid Services 177 4 rankings are based on 3 years of nomina - tions by specialists. To be considered for the 12 data-driven specialties, a hospital had to meet at least one of three requirements: mem - bership in the Council of Teaching Hospitals, affiliation with a medical school, or availabil - ity of at least 6 of 13 key technologies, such as robotic surgery. In 2017, U.S. News and World Report analyzed data from nearly 5,000 medi - cal centers and over 30,000 physician surveys.

Survival rates, patient safety, hospital reputa - tion, and specialized staff were analyzed fac - tors. In 2017, only 152 hospitals ranked in at least one of the specialties.

▸ Conclusion This chapter has focused on the tremendous im - pact the seven primary IOM studies have had on quality efforts to reduce errors in health care.

These studies include the following:

■ The Future of Nursing ■ Preventing Medication Errors ■ Patient Safety: Achieving a New Standard for Care ■ Keeping Patients Safe: Transforming the Work Environment of Nurses ■ Health Professions Education: A Bridge to Quality ■ Crossing the Quality Chasm: A New Health - care System for the 21st Century ■ To Err Is Human: Building a Safer Health System Theories of error and error management were explored, along with numerous national healthcare initiatives and mandates. Healthcare providers must be committed to developing a culture of safety in which errors are accepted as inevitable, but members of the healthcare team are ever vigilant and committed to the preven - tion of error. This new culture of safety includes support and counseling for those who make mis - takes and open communication of errors and safety issues ( BOX 8-3 ). Beginning in 2015, this program requires the United States Secretary of Health and Human Services (HHS) to adjust payments to hospitals that rank in the worst-performing 25% of all subsection (d) hospitals with respect to HAC quality measures. CMS may reduce these hos - pitals’ payments by 1%. The preventable com - plications include those that are nurse sensitive and hospital acquired, including stage 3 and 4 pressure ulcers, falls with injuries, and noso - comial infections. For example, nursing homes will no longer receive insurance reimbursement from Medicare for treatment provided to pa - tients with hospital-acquired (iatrogenic) stage 3 pressure ulcers. A community-acquired pres - sure ulcer that a patient comes into the hospital with, which is not documented on admission or within the time frame required by hospital policy, is considered hospital acquired (iatro - genic). Nurses must assess the patient’s skin with the same attention as the patient’s respi - ratory and cardiac status. This new Medicare standard essentially mandates that registered nurses who admit patients conduct a thorough skin assessment and document it appropriately.

After the initial skin assessment is completed by the registered nurse, it is incumbent on the physician to order appropriate treatments specific to the pressure ulcer stage and thus reduce the risk of advancement of a stage 1 pressure ulcer to stage 3. Although pressure ulcers are widely viewed as a result of poor nursing care, the collaborative effort of the mul - tidisciplinary healthcare team, or lack thereof, is responsible for the patient.

United States’ Best Hospitals In 1990 U.S. News & World Report magazine initiated an annual appraisal of U.S. hospitals.

Patients who truly need outstanding care are the target of the magazine’s annual Best Hospi - tals rankings. Hospitals are judged, not on rou - tine procedures, but on difficult cases across 16 specialties. Twelve of the 16 specialty rank - ings are driven largely by hard data; the other 178 Chapter 8 Healthcare Quality References Agency for Healthcare Research and Quality (AHRQ). (2002, September). Improving health care quality. Fact sheet. (Agency for Healthcare Research and Quality Publication No. 02-P032, Vol. 2003). Rockville, MD: Author. Agency for Healthcare Research and Quality. (2003). AHRQ’s patient safety initiative: building foundations, reducing risk. Retrieved from https://archive.ahrq.gov/research /findings/final-reports/pscongrpt/psini2.html Agency for Healthcare Research and Quality. (2005). 30 safe practices for better health care (Agency for Healthcare Research and Quality Publication No. 05-P007). Retrieved from http://www.ahrq.gov/research/findings/factsheets /errors-safety/30safe/index.html Agency for Healthcare Research and Quality. (2013a). Guide to patient and family engagement in hospital quality and safety . Retrieved from http://www.ahrq.gov/professionals /systems/hospital/engagingfamilies/index.html Agency for Healthcare Research and Quality. (2013b). National patient safety goals. Retrieved from http://psnet.ahrq .gov/resource.aspx?resourceID =2230 Agency for Healthcare Research and Quality. (2017). Patient Safety Network: Detection of Safety Hazards. Retrieved from https://psnet.ahrq.gov/primers/primer/24/detection -of-safety-hazards Agency for Healthcare Research and Quality. (2014). CAHPS surveys and tools to advance patient-centered care. Retrieved from https://cahps.ahrq.gov/ Allen, M. (2013). Why doctors stay mum about mistakes their colleagues make . Retrieved from https://www.propublica.org /article/why-doctors-stay-mum-about-mistakes-their -colleagues-make Al-Qahtani, S., & Al-Dorzi, H. M. (2010). Rapid response systems in acute hospital care. Annals of Thoracic Medicine, 5 (1), 1–4. American Board of Internal Medicine. (2017). Choosing Wi s ely. Retrieved from http://abimfoundation.org /what-we-do/choosing-wisely American Nurses Association. (2009). Nursing sensitive indicators. Retrieved from http://www.nursingworld .org/MainMenuCategories/ThePracticeofProfessional Nursing/PatientSafetyQuality/Research-Measurement /The-National-Database/Nursing-Sensitive-Indicators_1 Bipartisan Policy Center. (2013). A bipartisan Rx for patient-centered care and system-wide cost containment. Retrieved from http://bipartisanpolicy.org/library/report /health-care-cost-containment Byers, J. F., & White, S. V. (2004). Patient safety: Principles and practice . New York, NY: Springer Publishing Company. Centers for Disease Control and Prevention (CDC). (2017). Health expenditures . Retrieved from https://www.cdc .gov/nchs/fastats/health-expenditures.htm. DuPree, E., Anderson, R., & Nash, I. S. (2011). Improving quality in healthcare: Start with the patient. Mount Sinai Journal of Medicine, 78 , 813–819. Discussion Questions 1. Identify a common error in healthcare delivery and work through Reason’s Swiss Cheese Model, identifying how the holes can occur and what layers of protection should stop the error from getting to the patient. 2. How has the code of silence changed over the past few years? Is it more or less prevalent? Why? 3. What impact will the 2014 Hospital Na - tional Patient Safety goals have on hospital care? How will they effect reimbursement? 4. Discuss how public reporting of the HCAHPS survey will create incentives for both hospitals and nurses to improve quality of care. BOX 8-3 Red Flag Alerts for Patient Safety Healthcare practitioners must be educated and alerted to red flags in their care of patients. When a red flag is identified, appropriate action should be taken to remedy the situation. Specific red flags include the following: ■ Poor treatment results ■ A lack of follow-up care ■ Repetitious problems ■ Equipment malfunctioning ■ Dissatisfied patients or family members ■ Poor staff–patient relations ■ Intimidated patients ■ Poorly maintained medical records ■ A lack of policies or procedures ■ Excessive volume of patients ■ Acting outside the scope of practice ■ Personality conflicts ■ Performance of a procedure without needed supervision Data from Kavaler, F., & Spiegel, A. D. (2003). Risk management in health care institutions: A strategic approach (2nd ed.). Sudbury, MA: Jones & Bartlett Publishers. 179 References Kohn, L. T., Corrigan, J. M., & Donaldson, M. S. (Eds.). (2000). To err is human: Building a safer health system . 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The Wall Street Journal . Retrieved from https://www .wsj.com/articles/how-to-make-hospitals-less-deadly -1463526075 Makary, M. A., & Daniel, M. (2016, May 3). Medical error—the third leading cause of death in the US. BMJ , 353 . Retrieved from http://www.bmj.com/content/353 /bmj.i2139 Mathews, C. (2013, January). Healthcare’s triple aim: How technology is facilitating collaboration among members, providers and payers. Health Management Technology, 31(1), 24. Retrieved from http://www.healthmgttech .com/articles/201301/healthcares-triple-aim.php Medcom. (2017). Medication errors in nursing: Common types, causes, and prevention . Retrieved from https:// www.medcomrn.com/index.php/articles/common -nursing-medication-errors-types-causes-prevention/ Medicare. (2014). Hospital compare. Retrieved from http://www.medicare.gov/hospitalcompare/search .html?AspxAutoDetectCookieSupport =1 National Association for Healthcare Quality. (2012, October 16). 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Journal of Perinatal Neonatal Nursing, 19 (1), 24–34. Sorry Works! (2013). Sorry Works! history. Retrieved from http://sorryworkssite.bondwaresite.com/history-cms-29 Spath, P. L. (Ed.). (1999). Error reduction in health care: A systems approach to improving patient safety . San Francisco, CA: Jossey-Bass. The Joint Commission. (2013a). 2012 national patient safety goals . Retrieved from http://www.jointcommission .org/mobile/standards_information/national_patient _safety_goals 181 References reduces the likelihood that a skin assessment will be predictive of pressure ulcer development during a hospitalization. The explanation is rather simple. The complete tool was tested for validity and reliability. Even minor changes can impact the accuracy of the scale. Research has been conducted by Bergquist (2001) testing modified Braden Scales and subsets to determine the extent of accuracy for predicting patients at greater risk of developing pressure ulcers. Bergquist found that the summative score, rather than any subset of the Braden Scale, was most predictive of pressure ulcer risk for older persons receiving home health care; however, researchers in China (Kwong et al., 2005) found a modified Braden Scale more predictive for pressure ulcer development, with the addition of skin and body build for height and the exclusion of nutrition, which was a surprising finding. One explanation offered by the researchers was that the focus of oral intake and protein only does not accurately represent patients’ nutritional status. It may also be necessary to explore modifications of the Braden Scale based on cultural differences. Assessment tools such as the Braden Scale may not be as accurate as nurses’ judgment. A study conducted by Lewicki, Mion, and Secic (2000) for cardiac surgery patients found that the sensitivity of the Braden Scale was 40% and its specificity was 70%, compared with nurses’ judgment, which was found to have a sensitivity of 49% and a specificity of 73%. Additionally, the researchers suggested that the cutoff score, which has been 16 or less, is more applicable to long-term care than acute care and may need to vary for each postoperative day. The National Database of Nursing Quality Indicators (NDNQI) accepts data from hospitals that use other skin assessment scales. Data from the Norton Scale are also acceptable and, in fact, are noted on the data collection tool that the designated NDNQI site coordinator must use to enter data. Unfortunately, there is no way to determine whether the calculated score using the Braden Scale or Norton Scale published on the NDNQI website for the participating hospitals is based on use of the complete Braden Scale, Norton Scale, or a modified version that had been previously tested for validity and reliability.

The accuracy of this data is of great importance to the participating hospitals so individual units can compare themselves to similar types of CASE STUDY Patient Risk Assessment Tools Helen Werner Patient Falls: Morse Fall Scale Fall incidence and subsequent injuries are of great importance as nursing quality indicators. The Morse Fall Scale is not always an accurate assessment of fall risk, according to the guidelines developed by Morse (2009); therefore, the predictive value is indeterminate. A study conducted in Australia by McFarlane-Kolb (2004) found that the Morse Fall Scale, in combination with other risk factors, more accurately reflected fall risk among older persons admitted to an acute surgical unit. Major tranquilizer use and male gender were the most significant predictors of fall risk in this population.

The Morse Fall Scale can easily be modified to include additional risk factors that are more accurate predictors of fall risk for the indigenous population. This is important in terms of guidelines that are developed by the hospital, which may be formulated based on a calculated fall risk that may be inaccurate for the population being served. If a patient is identified to be at risk for falls, a more in-depth assessment is needed to determine the causative factors, especially those that are treatable. Several fall-risk assessment tools were evaluated for validity by Ang, Mordiffi, Wong, Devi, and Evans (2007). The Morse Fall Scale, the St.

Thomas Risk Assessment Tool in the Falling Elderly Inpatients, and the Heindrich II Fall Risk Model were all validated for interrater reliability and validity studies; however, only the Heindrich II Fall Risk Model had a higher level of specificity (61.5%) than the Morse Fall Scale (48.3%). The Morse Fall Scale is the gold standard for fall-risk assessment in the United States; however, if nurses demonstrate difficulty scoring a patient’s fall risk accurately, it may be necessary to consider piloting the use of another scale that may be more user friendly.

Patient Skin Assessment Tools It is not uncommon for clinicians to shorten or modify risk assessments, like the Braden Scale, according to Braden and Maklebust (2005). This 182 Chapter 8 Healthcare Quality CASE STUDIES Braden, B., & Maklebust, J. (2005). Preventing pressure ulcers with the Braden Scale. American Journal of Nursing, 105 (6), 70–72. Kwong, E., Pang, S., Wong, T., Ho, J., Shao-ling, X., & Li-Jun, T. (2005). Predicting pressure ulcer risk with the modified Braden, Braden, and Norton Scales in acute care hospitals in mainland China. Applied Nursing Research, 18 , 122–128. Lewicki, L. J., Mion, L. C., & Secic, M. (2000). Sensitivity and specificity of the Braden Scale in the cardiac surgical population. Journal of Wound, Ostomy and Continence Nurses Society, 27 , 36–41. McFarlane-Kolb, H. (2004). Falls risk assessment, multitargeted interventions and the impact on hospital falls. International Journal of Nursing Practice, 10 , 199–206. Morse, J. M. (2009). Preventing patient falls (2nd ed.). New York, NY: Springer Publishing Company. participating NDNQI units across the country.

The collection and entry of data for quality improvement as a participating hospital in NDNQI is deemed necessary to attain Magnet certification.

References Ang, N. K. E., Mordiffi, S. Z., Wong, H. B., Devi, K., & Evans, D. (2007). Evaluation of three fall-risk assessment tools in an acute care setting. Journal of Advanced Nursing, 60(4), 427–435. Bergquist, S. (2001). Subscales, subscores, or summative score: Evaluating the contribution of Braden Scale items for predicting pressure ulcer risk in older adults receiving home health care. Journal of Wound, Ostomy and Continence Nurses Society, 28 , 279–289. Case Study 183 CASE STUDIES 185 © Anthony Krikorian/Shutterstock SECTION 4 Health Financing:

Payers, Markets, and Models CHAPTER 9 Healthcare Costs: Follow the Money CHAPTER 10 Private Health Insurance Market CHAPTER 11 Medicare: Protector to Innovator CHAPTER 12 Medicaid and the Financing of Care for Vulnerable Populations: A Story of Misconceptions CHAPTER 13 Innovation for the Delivery System of the Future: Medical Homes, Accountable Care Organizations, and Bundled Payment Initiatives © Anthony Krikorian/Shutterstock Healthcare Costs: Follow the Money Prabal K. De OBJECTIVES ■ Understand how health care is different from almost all other goods and services that we consume. ■ Define the basic economics terms of health care—demand and supply. ■ Describe the concepts of insurance and asymmetric information of moral hazard and adverse selection. OVERVIEW When an ambulance brings in a patient to an emergency room with symptoms of a heart attack, the doctors and nurses immediately spring into action—connecting the patient to an EKG, having an IV line put in, possibly starting oxygen and medications. If you are a nurse, the last thing you are thinking about are the various costs associated with such procedures. The Emergency Medical Treatment and Labor Act (EMTALA) ensures that hospitals do not deny care to patients regardless of their insurance coverage. Unfortunately, what happens in such situations have far-reaching consequences for all parties concerned: the patient who would be facing a bill, the hospital that would run the risk of foregoing payments for their services, and the hospital employees whose salaries come from the hospital and have a stake in the financial health of the hospital. Collectively, such costs, both aggregate and how they are shared, have deep implications for the overall healthcare sector and the economy. In this chapter, we will analyze the economic aspects of healthcare production and delivery in the United States, including how market forces have shaped the organization of healthcare sector in U.S. in the last 60 years or so. (continues) 187 CHAPTER 9 ▸ Health Care Is Different The first step to understanding the healthcare market is to understand the fact that health care is unlike any other goods and services that we consume. It is often easy to be swept away by popular catchwords such as “market-driven solu - tions.” Although we will talk about healthcare provision in the U.S. in terms of market forces, it is often fallacious to compare health care with markets of, say, broccoli. Some of the broad distinctions were laid out by Nobel prize–winning economist Kenneth Ar - row in his seminal article (Arrow, 1963). He ar - gues that the healthcare market has some unique risk elements because “Recovery from disease is as unpredictable as its incidence” (p. 951). These insights are still relevant in the U.S. market, so it is worth discussing them in some detail. First, the nature of demand is very different. The demand for health care is not like demand for broccoli that is predictable from an individ - ual point of view. Apart from some goods and services like wellness and preventive cares (such as exercising, taking vitamins, and vaccinations), most of the medical services are sought if and when necessary. Second, the role of physicians and nurses as service providers is unique. Although it is true that there are other personal services—such as personal finance advisors, or even hair stylists— where the outcome can have important impacts and there has to be some unusual amount of trust associated with the provider, because physi - cian’s services can alter the odds between life and death, and care delivered by nurses is so per - sonal, such trust has to be supreme. These ser - vices are also less substitutable compared to other services. Third, just like the service, the quality of product is also uncertain. If a person is involved in an accident, the paramedics would take the individual to the nearest emergency room, and may be admitted later in that hospital. Obviously, the victim would be in no position to compare hospitals in a way he or she would probably do before buying many other products. Moreover, for many of our day-to-day products and even services, we make repeated purchases. That is also not likely in medical care. A consumer may have only one shot with a pacemaker or a pros - thetic knee. Fourth, production of healthcare profes - sionals, including nurses, is different from the production of many other professional services.

Although many professionals such as lawyers and social workers need licensing, the education of the numerous professionals in health care is long, intense, and expensive. Incentivizing the production of a licensed healthcare workforce is often subsidized by the U.S. Congress through Medicare and regulated by the disciplinary bod - ies for quality and limits or expansion in short - age times as needed. Fifth, the healthcare sector has some of the most sophisticated pricing practices in the whole economy. It is worth pointing out one remark - able pricing trait that economists call price dis - crimination—the practice of charging different prices to different customers for the same prod - uct at the same time. In some extreme cases, that price may be zero—hospitals and other providers ■ Analyze the cost of care among various components of the health sector—hospitals, pharmaceuticals, and healthcare providers. ■ Discuss the benefits and/or justification of cost inflation. ■ Explore how the ACA and potential future health policy might influence cost. OBJECTIVES (continued) 188 Chapter 9 Healthcare Costs: Follow the Money often write off bills for patients who cannot af - ford to pay anything. They may be extraordi - narily high for wealthy overseas patients seeking care in one of the top hospitals. There are commonalities in the issues of uncertainty and unpredictability. There is an underlying assumption of trust, which means that there is an inequality of information be - tween individuals and healthcare services and product. To analyze these distinctions, it is im - portant to begin with an introduction to the ca - nonical economic thinking that is common in analyzing any economic situation in general.

▸ Resource Allocation and Market Role Broadly speaking, economists study allocation of scarce resources among alternative, some - times competing, uses. For example, should the federal government allocate more money to Medicaid, the program that provides health care to certain underprivileged groups like the poor and disabled, or to defense and national security? Or for a private healthcare practice, should the providers hire more secretaries to field patients’ calls for appointments or buy an expensive software application that moves the scheduling process online? Even though the two examples describe similar problems, there is one key difference. In the first case, the de - cision is taken by the federal government with no concerns for profit or loss. But in the sec - ond case, the practice, assuming that it is a pri - vate organization, wants to maximize its profit by maximizing revenue and minimizing cost.

In this section, the concept of market-based health care is described. Any market is based on the idea of exchange, whereby some individuals barter some of their goods and services to other individuals in ex - change for some other goods and services that those other individuals may offer, so that both of them get better off compared to their positions before the trade had taken place. This basic idea gives rise to the popular notions of demand and supply in basic economics.

Let’s start with a commodity that many of us have ordered—hamburgers. Given some - one’s income and preferences, one may ask here how many hamburgers an individual may eat a week when the price of a hamburger var - ies from 25 cents, $1, $2, up to $100. Intuition suggests that an individual would want to eat a lot of hamburgers when the price if 25 cents, and possibly none when it is $100. This hypo - thetical schedule is called the demand schedule and typically shows an inverse relationship be - tween quantity demanded and the price of the product. While price is one of the most import - ant determinants of demand, there are several other factors that affect demand for a good or service—income, taste and preference, availabil - ity of alternatives. However, they affect the core inverse relationship between a product and its quantity demanded, which is often called the law of demand, from outside only. The other side of the exchange is known as the supply side. For the hamburger restau - rant, if they can get $100 per hamburger, they would want to sell many. Contrarily, if the price is 25 cents, they possibly would not want to sell any . This hypothetical schedule is called the supply schedule and typically shows a posi - tive relationship between quantity supplied and the price of the product. Supply also de - pends on several factors other than the price of the commodity in question. The most import - ant set of factors is called “inputs”—labor and other materials that go into the production of the commodity. How many hamburgers would be sold? This decision would be taken by what Adam Smith famously called the “invisible hand” of the market. Through some back and forth, the sellers and buyers would figure out the price at which all the hamburgers would be sold. If people are lining up for hamburgers, the price would go up; if the store has much inventory at the end of the day, price would fall. Let’s say $1.50 is the magical price where all hamburg - ers are sold and no one wants to change their Resource Allocation and Market Role 189 need to make one more distinction—between consumer and capital goods. A consumer good is something that you consume within a per - iod of time, say a month or year. Most of the conventional goods that you think of are con - sumer goods. A capital good, on the other hand, is something that you consume over a period of time, say a car. Extending this analysis to health choices, we can apply a framework that was developed by one of the pioneers in the field of health economics, Michael Grossman (1972). The first important insight is that individuals want a commodity akin to “good health” (not med - ical care per se). Second, this commodity is both a consumption and an investment good. It is a consumption good because individuals derive satisfaction from consuming good health. It is also an investment good because healthier days arguably lead to more productive days, helping earn higher income. However, we are also interested in know - ing how the demand for such goods responds to prices to develop a demand schedule for health goods and services. The demand is tricky be - cause of the factors associated with the unusu - alness of health products. One way to do this is to somewhat arbitrarily change healthcare access for a reasonably big population. For example, a group of people can be chosen by lottery to re - ceive health insurance with no copay. In terms of the mechanism in the hamburger analogy, this would be tantamount to making hamburg - ers cheaper for a group of people. Question is:

Would they consume more hamburgers? It is less obvious for health care because of the unusual nature of the product. But the equivalent ques - tion would be—Do consumers consume more health services such as visits to a doctor’s office if such visits are made cheaper? Two famous ex - periments—one conducted by the RAND Corpo - ration (Newhouse et al., 1981) and the other by the state of Oregon (Baicker & Finkelstein, 2001) did something similar. They randomly assigned groups of people with no copay and positive co - pays. If there is an inverse relationship between price and quantity of medical care demanded, buying and selling choice. This price is called the equilibrium price, a sort of status quo that once reached, tends to remain. It is worthwhile to appreciate both the ele - gance of this mechanism and its inadequacy to be fully applicable in the healthcare sector. A complex decision about how many hamburgers to produce was taken by anonymous interaction of many individuals without anyone (particu - larly the government) telling them how to be - have. However, some of these notions make less sense, for example, a colonoscopy. How many colonoscopies would one choose to have in a year? Fortunately, economists have developed some apparatus to discuss health in terms of forces of demand supply that is both insight - ful and useful.

Demand for Health Even though our health is susceptible to various uncertainties, we can arguably control many as - pects of it. For example, we can eat healthy, do more exercise, and cease smoking. In other words, we can exercise some choice with respect to the quality and quantity of health-related factors. At an individual level, economists charac - terize this process in the following way: Sup - pose you have a fixed monthly budget and you have to choose between housing and food.

Within your budget, you can choose to have a smaller apartment to have better, more ex - pensive food, and vice versa. (Note that this is nothing but a personal resource allocation problem that many of us solve all the time, perhaps unconsciously). Therefore, given the rents of various types of apartments and food prices that you cannot change, you can choose to have an optimal allocation between food and housing. Now suppose the price of food goes up. As a result, you will probably consume less food and vice versa. To summarize, for vary - ing prices of a good, assuming that income and other prices remain the same, you will choose to consume more or less of a good or service (and this is exactly how the individual demand is drawn up as discussed above). Finally, we 190 Chapter 9 Healthcare Costs: Follow the Money single-payer systems contemplated in the late 1950s. In effect, the supply of doctors has in - creased only modestly in the U.S. Moreover, there has been fragmentation within the profes - sion. In line with economic theory, higher price (payment from insurance companies and dir - ectly from patients) has attracted proportionally more doctors to more specialized fields, leaving basic areas like family medicine low in supply.

In nursing, the shortage has increased funding for nursing education through periods of highs and lows, stimulating enrollments in schools rel - ative to the period. The other major “supplier” of medical care is hospitals. Hospitals have evolved enormously over the years, transitioning from dingy, often unsanitary, unregulated places to modern-day, state-of-the-art facilities. Following the 1946 Hill-Burton Act, which provided federal fund - ing for building hospitals, there has been a ma - jor expansion of hospitals in the U.S. However, that trend reversed from the mid-1970s for a variety of reasons. First, the direct incentives to build new hos - pitals dried up. Second, and more fundamen - tally, the rate of hospitalization in general also declined. The latter happened due to a few rea - sons. First, technologically, many procedures did not require hospitalization for treatment any more (i.e., the advent of laparoscopy). Sec - ond, insurance companies and the Centers for Medicare & Medicaid Services (CMS) did not always follow a fee-for-service (FFS) system and started basing their payments on patients’ med - ical conditions. Therefore, in the former sys - tem, the longer a patient stayed in a hospital, the more Medicare/Medicaid paid. Since Medi - care subsequently paid a fixed amount, hospi - tals had less incentive to keep patients longer than necessary. National average hospital bed occupancy rate was only 61% in 2012 (Becker’s Hospital Review, 2014).

Insurance How does insurance impact the market? Unlike other markets, in general, individuals demanding then the latter group, facing a higher price, would use less of it. The studies found broad support for the conjecture that zero copay leads individ - uals to consume more service (Newhouse et al., 1981; Baicker & Finkelstein, 2011).

Supply of Health Care What about the supply of health care? Although health services in the U.S. and elsewhere are provided by a variety of individuals and insti - tutional settings, let us focus on two major pil - lars—professionals such as doctors and nurses, and institutions such as hospitals. In terms of the availability of physicians, the United States performs much worse than many other developed countries. According to the Or - ganisation for Economic Co-operation and De - velopment (OECD) data, there are 2.6 doctors per 1,000 inhabitants in the U.S. compared to 4.4 in Norway and 4.1 in Germany (Lafortune & Moreira, 2015). Additionally, this average number also masks the vast amount of regional inequal - ity in physician availability in the U.S., where it is well known that rural areas are more under - served than their urban counterparts. The slow growth of doctor availability is not actually due to market forces. The supply of physicians, and to some extent nurses, is closely monitored by various agencies in the U.S. that affect the supply, including the parent organiz - ation and education accreditors for each—e.g., the American Medical Association (AMA), the American Association of Medical Colleges (AAMC), and in nursing, the American Associa - tion of Colleges of Nursing (AACN). In nursing, alliances of organizations have been instrumen - tal in lobbying the U.S. Congress for incentiv - izing and growing the workforce supply during periods of shortages. As an example of the slow growth in doctor availability, ever since its foun - dation in 1847, the AMA has strived to regulate the profession of practicing medicine in a var - iety of ways. It powerfully lobbied state legisla - tures to require licenses to practice medicine, it tried to close low-quality medical schools in the early 20th century, and vigorously opposed Resource Allocation and Market Role 191 of estimating the risk of a particular event’s oc - currence, for example, a man between the ages of 65 and 75 having a heart attack for the first time. Assume for simplicity that the insurance company cannot test its potential customers for their existing health conditions and behaviors, but need to rely on their self-disclosure. The intuition does not change even if the insurance company uses a battery of tests. For example, a patient healthy at the time of testing may have a history of hypertension in his family. Even though the insurance company does not know individual risk profiles, it has an idea about the composition of high-risk and low-risk patients in the target population. It usually cre - ates an average price, or premium, to collect from all its customers to cover the cost of care when one or few of its customers do suffer from events like heart attacks. Unfortunately, it might be the case that the premium is too high for individuals who have low risk of heart attack—as an example, a man who eats healthy, exercises regularly, and has no history of heart problems in the family. As a re - sult, he may choose not to buy that insurance contract. Contrarily, for someone who knows that she is high risk, that premium may actually be a good deal to cover herself from the cost of treating a heart attack. Next, explore the consequences of these de - cisions for the insurance market. The company based its price on the assumption that both high- and low-risk customers would buy that contract, lowering the average risk of a random client suf - fering from a heart attack. If many low-risk cus - tomers find the premium too high and withdraw from the insurance contract, the company would be left with only the high-risk customers. This is called the problem of adverse selection where high-risk customers self-select themselves into a contract meant for a more diverse risk pool. It is easy to see how this can destabilize the mar - ket. If higher risk customers over-represent the insured pool, then the insurance company may incur a loss in that period. Consequently, they may raise the premium for the same contract the following year. Unfortunately, that may not the product and individuals and institutions supplying that product do not interact directly in the healthcare market. Again, this is because health products and their demand are rife with uncertainty. The standard approach to deal with uncer - tainly in economics is to insure oneself, be it ac - cidents involving cars, flooding of basements, or losing or breaking your iPhone. In these cases, the cost of bad events is borne by a third party. What is insurance? At its core, insurance is based on the premise of idiosyncratic risk, which means while all individuals face the risk of falling sick or being in an accident, such risks are largely independent of each other, and the probability that all of them would be in an ac - cident is very small. Therefore, if everyone con - tributes to a pot of money on a regular basis, called premiums, then if an individual faces a bad outcome, that pot of money can be used to pay for services needed. Although the idea seems straightforward, insurance is one of the most complex economic arrangements. The key reason behind this is what economists call the problem of informa - tion asymmetry . These asymmetries are broadly categorized as either hidden information or hid - den action . Hidden information refers to the sit - uation when one party (such as the customer of a health insurance company) has more infor - mation on the item being insured (his or her health) than the other party (such as the insur - ance company). Hidden action, on the other hand, refers to the situation when one party (i.e., the customer) takes action that affects the outcome of the contract that he or she has en - tered with the other party (i.e., the insurance company), which cannot necessarily be veri - fied by the latter. Broadly speaking, both hidden informa - tion and hidden action affect the health insur - ance market. Examples follow.

Hidden Information Health insurance companies assess what is called the actuarial risk—a statistical method 192 Chapter 9 Healthcare Costs: Follow the Money patient health. Since the providers get paid for each procedure, and not remission of illness or prevention of relapse, there is incentive to order excessive, often unnecessary, procedures. To be sure, this does not have to be a sinister criminal plan, and it seldom is. The problem lies in the complex web of information asymmetry and incentive systems. When a provider finds out that the patient is covered, the provider may or - der procedures that are marginally important to protect the patient (and possibly self against any potential malpractice lawsuit), even when there is no benefit personally from those procedures. But it is very difficult for the patient and pro - vider to make an economic decision (in case there are copays) by themselves. Unfortunately, this system has contributed significantly to the escalation of costs through - out the system. Since patients are often pro - tected by a fixed copay, and generally trust their providers, they seldom question recommended tests and treatments. Insurance companies, on the other hand, try to pass on this higher cost to their enrollees in terms of higher and higher premiums. (Note how higher premiums affect individuals who did not seek much medical care, creating an indirect burden on healthier individ - uals.) In fact, it is widely recognized by now that the most threatening and overarching problem in the U.S. healthcare sector is escalating cost.

▸ Cost — The Main Problem While mechanisms such as copays and differ - ential contracts solve some of the informational asymmetries, they do not address the fact that health care in the United States remains enor - mously expensive, particularly compared to other industrialized countries. The difference is even more remarkable when we compare some of the standard health outcome indica - tors across these countries. Despite spending more money per capita, the U.S. often falls be - hind other industrialized countries in terms of solve the problem. It may drive some moder - ate-risk customers out who may deem this new premium too high—driving the market relent - lessly towards the point where only high-risk customers are willing to insure. In an extreme case, no feasible insurance contract may exist, even for nonprofit insurance companies.

Hidden Action Assume for the moment that there is no hidden information and insurance companies can get to know a complete medical history of patients before they sell them insurance. Now suppose a 50-year-old man, John, who smoked perhaps two cigarettes a day, drank three beers a week, and had a body mass index of 27, bought insurance.

By conventional standards, he is low risk and secures a low level of premium. However, hav - ing bought the insurance and been assured of medical care, he starts to smoke more, drink more, and switch to an unhealthy diet. Unfortu - nately, the insurance company cannot monitor these behaviors. Therefore, the contract, which was sold on the basis of original risk, becomes skewed because of the underlying risk that he fell sick, and the required care increases. Relationships of providers with both insur - ance companies and patients can also poten - tially suffer from moral hazard problems. One of the most important assumptions in health - care provision is that doctors and nurses do not consider their own economic well-being while recommending and carrying out treat - ments. Unfortunately, often there is little re - course to verify if such assumption is violated.

Patients lack expertise to question the treatment course ordered. Although insurance companies and the Center for Medicare & Medicaid Ser - vices (CMS) have experts to scrutinize a rec - ommended treatment course, the information asymmetry problem is unavoidable. The prob - lem is embedded in the popular fee-for-service (FFS) model of payment, where the medical provider is paid (either directly by the patient or the private or public insurance agency) for medical expenses regardless of their impact on Cost—The Main Problem 193 and medical science has improved and extended lives for many. If this improvement has come at a high cost, that may be acceptable. It may be useful to think about it in a more personal way: If improving your health makes you sub - stantially happier, then you may want to spend 15% of your income on health. Unfortunately, for the United States, the higher spending often does not translate into better health outcomes. There are many ways to measure health outcomes, but some of them are universally accepted to important goals across countries and cultures. Infant mortality rate (IMR) is one of them. It measures how many babies lose their lives during the first year of their birth per 1,000 live births. Globally, health professionals strive to keep this ratio as low as possible. While infant health is obviously unpre - dictable, systemically high rates of IMR point to deficiencies in the health delivery system (see FIGURE 9-2) (World Bank, 2017). Figure 9-2 represents data for infant mor - tality rates for those 10 highest countries that were represented in Figure 9-1. The graph shows a remarkable fact—in spite of spending the health outcomes. Additionally, there is a vast amount of disparity within the U.S. in terms of those health outcomes, both in terms of geog - raphy and race and ethnicity. To illustrate some of the points that depict the comparisons, consider FIGURE 9-1, which shows the total health expenditure (THE) for top 10 industrialized countries as percentages of their gross domestic product (GDP) in 2014.

Note, first of all, that not only does the U.S. spend the highest proportion among all 10 countries, it outspends the next highest spending country, Sweden, by more than five percentage points.

There is also a remarkable similarity between the other (mostly European) countries as far as the percentage of THE in GDP is concerned.

Finally, note that these are the highest spend - ing countries by this metric, so some of the ad - vanced countries such as the United Kingdom or Australia, whose numbers are slightly less than 10%, are not even in the graph (OECD, 2017). It can be argued that spending more money is not a bad outcome per se. It is true that hu - mankind has made tremendous progress in re - ducing and virtually eliminating many diseases, 0.00 2.00 4.00 6.00 8.00 1 0.00 1 2.00 1 4.00 1 6.00 1 8.00 United Stat es Sw eden S witz erland France Ger man y A ustr ia New Zealand Nether lands Denmar k Belgium % of GDP spent on healthcar e Total Health Expenditur e (THE) % Gross Domestic Pr oduct (GDP)-2014 FIGURE 9-1 Total health expenditures for top 10 industrialized countries as percentage of gross domestic product—2014 Data from World Health Organization. (2017). Global Health Observatory (GHO) data. Retrieved from http://www.who.int/gho/health_financing/total_expenditure/en/ 194 Chapter 9 Healthcare Costs: Follow the Money much poorer (Sri Lanka’s per capita income is 7% of the United States). Therefore, the disconnect between national spending and health outcomes, both in compar - ison to the performances of other industrial - ized countries and between states in the U.S., is quite clear. The general consensus is that the U.S.

spends too much on health care and no matter how that bill is shared, as an economy, it would soon struggle to pay that bill. And this height - ened spending has not been accompanied with highest proportion of its national income on health, the U.S. has the worst outcome among the industrialized countries shown in the figure in terms of IMR. Although such trends can be seen in other important health outcomes such as life expectancy, such anomalies are (fortun - ately) not seen across the board. In fact, the U.S.

excels in certain areas of health outcomes, par - ticularly innovations. There is more to this story. So far, the data suggest that some health outcomes in the U.S.

compare poorly with other advanced countries in the world. In addition, however, significant in - equality exists within the U.S., both across vari - ous regions and across different socioeconomic and demographic groups. There is a growing literature on various socioeconomic determi - nants of health that traces differences in health outcomes to these variables. Although beyond the scope of this chapter, excellent discussions about race, region, and social determinants can be found in the works of Williams (1999) and Williams, Neighbors, and Jackson (2003). FIGURE 9-3 plots the IMRs of two U.S. states, Mississippi and Alabama, and three countries that span continents and are much poorer than the U.S. We can see that some states in the U.S.

perform much worse than countries that are 0 1 2 3 4 5 6 Sweden Denmar k A ustr ia Ger man y Nether lands BelgiumSwitz erland France Ne w Zealand United Stat es Infant mor tality ra tes Inf ant mor tality rat es in countr ies that spend highest pr oportions of GDP on health 0 2 4 6 8 10 12 Cuba Alabama Louisiana Costa Rica Sri Lank a Mississippi Inf ant mor tality rat es for select ed countr ies and states in the Unit ed States Infant mor tality ra te FIGURE 9-3 Infant mortality rates for selected countries and states in the United States Data from Kaiser Family Foundation. (2018). Infant Mortality Rate (Deaths per 1,000 Live Births). Retrieved from http://kaiserf.am/2snoFoo FIGURE 9-2 Infant mortality rates in countries that spend highest proportions of GDP on health Data from World Bank. (2017). World Development Indicators. Retrieved from http://data.worldbank.org/data-catalog/world-development-indicators Cost—The Main Problem 195 going up over the years (2015). From an econo - mist point of view, rising cost is not necessarily a bad thing if it is also accompanied by bet - ter quality; but in this case, even before getting into the quality issues, what is more disturbing is the lack of transparency and efficiency. In a long article published in Time magazine, Ste - ven Brill pointed out a widespread practice in the hospital industry of using a protocol called the Chargemaster to bill patients (2013). Admit - tedly, healthcare products cannot be priced in the same way as, for example, a laptop or hair - cut, but the pricing scheme appeared almost completely arbitrary, where generic over-the- counter medicine is charged with hundreds of percentages of mark up. Hospitals run as not- for-profit institutions saved vast amounts of money in federal, state, and local taxes with a loose mandate of community engagements, particularly in densely populated poor urban areas, but the proportions of their budget de - voted to charity remained less than 2% to 3% in most of the cases. While there was no profit to be distributed to the shareholders, evidence suggests that these hospitals lavishly spent on facilities and on their top doctors and execu - tives (Brill, 2013). Fortunately, the cost problem is being widely recognized and initiatives are being taken to address the problem. As previously discussed, one key problem with the FFS payment system is that it rewards quantity of service provided, rather than quality—escalating costs while not necessarily improving care. To address this is - sue, the Center for Medicare & Medicaid Inno - vation, formed as part of the ACA, started an initiative called Bundled Payments for Care Im - provement (BPCI). The idea is to improve qual - ity and lower cost by reducing fragmented care.

For example, using a definition of “episode of care” as an inpatient stay at a hospital for a pa - tient, under the traditional Medicare payment system, hospitals and doctors are paid separately for their services provided for the same patient.

But in the BPCI system, under one model, the payments are still based on FFS, but are ret - rospective in nature, bundled together, and a steady and uniform improvement in some of the basic health outcomes over the years. Although it is not easy to identify a single source of cost escalation, let us take an account - ing approach and look at the different sectors that constitute the overall healthcare economy.

Then we can examine the nature of cost infla - tion in each of them. According to Fidelity Research, the Healthcare sector had a market capitalization of 5.08 trillion dollars, about 20% of the total market capitaliza - tion in the U.S. stock market, as of April 17, 2018.

The sector consists of six industries (in decreas - ing order of market capitalization): Pharmaceu - ticals, Biotechnology, Health Care Equipment & Supplies, Health Care Providers & Services, Life Sciences Tools & Services, and Health Care Tech - nology (Fidelity Investments, 2018). Pharmaceu - ticals rank 5 th in the overall industry-level ranking for market capitalization. The above estimates do not include the hospital sector, which according to CMS estimates, was a little more than a tril - lion dollars in 2015 (CMS, 2015). It is difficult to identify a single factor or sector that is responsible for the cost escalation.

It is somewhat easier to see for publicly traded profit-driven pharmaceutical and insurance companies (categorized under the managed care sector). Executives are driven by the com - pany’s bottom line and often such objectives are at odds with patients’ welfare. Obviously, there is a public recognition of this conflict and a va - riety of government regulations are in place to protect patients’ interests. Unfortunately, at the same time, these companies have armies of lob - byists to cut down such regulations. According to a bipartisan Center for Responsive Politics analysis of all lobbying expenditures as found in U.S. Senate Office of Public Records, more than 500 million dollars were spent on lobby - ing for the healthcare sector in the United States in 2016, a more than 40% increase compared to 2006 (Center for Responsible Politics, 2016). Cost escalation also comes from the not-for-profit section of the healthcare sec - tor. According to the CMS, not only are hos - pital costs rising, the rates of increase are also 196 Chapter 9 Healthcare Costs: Follow the Money genome editing, and sophisticated cardiovas - cular devices. The trade-off between impos - ing price control and setting lower incentives for research spending is present here also. If a company develops a new prosthetic knee that is significantly better than the current state of the art device, should it be allowed to charge as much as it can get from the market? Gener - ally, the question confronting the stakeholders is: Can the increase in benefit justify the cost hyperinflation? This is a complex issue and does not sug - gest any last word; however, it is worth explor - ing a bit deeper. One way to assess the “benefit” from healthcare innovation is to measure the life-years saved by a health intervention (some - times adjusted for quality). Cutler, McClellan, Newhouse, and Remler (1998) examined the cost and benefit of heart attack treatments between 1984 and 1991 using a Medicare dataset. They found that the total cost of treatment (including commodities like beta blockers and services of professionals) increased by 32%. However, in a follow-up study, they found that improvements in the quality of treatment during this period led to heart attack survivors living 8 months extra on average. Using some complex calculations, they concluded that the cost inflation was out - weighed by the benefits accrued. While the general argument that one should not merely look at the cost without factoring in the benefit is valid, it does not necessarily mean that all cost increases have been associated with increased quality and benefit. For example, Cut - ler and colleague’s studies used Medicare data, while it is well-known that Medicare reim - burses at the lowest rate among all insurers. In fact, according to American Hospitals Associ - ation (AHA), hospitals lose money from Medi - care reimbursements (AHA, 2013). According a recent Commonwealth Fund report, the U.S. performs well in terms of sur - vival rates after major issues like breast cancer or strokes compared to its peers in the indus - trialized world (Schoen, Hayes, Collins, Lippa, & Radley, 2014). Moreover, the U.S. does lead in innovation in both pharmaceuticals and reconciled against a “target” price. Under yet another model, “CMS makes a single, prospec - tively determined bundled payment to the hos - pital that encompasses all services furnished by the hospital, physicians, and other practitioners during the episode of care, which lasts the en - tire inpatient stay” (CMS, 2014). There is no denying the fact that as medi - cal spending has increased over the years, so has the overall quality of care, both in the U.S. and worldwide. Fifty years ago, an average Amer - ican was expected to live for 70 years (com - monly known as life expectancy). Today they can expect to live 9 more years. Many diseases like plague and smallpox that have historically claimed millions of lives have now been elimi - nated. Vaccines have improved preventive health enormously. Even some more recent challenges such as human immunodeficiency virus (HIV) have been met with some success—people with HIV have been managing their lives through medications that were not available just a few years ago. Death rates from acquired immu - nodeficiency syndrome (AIDS) have also been falling steadily. The number of AIDS-related fa - talities fell from 1.9 million in 2005, the year of peak mortality, to 1 million in 2016 (UNAIDS, 2017). These benefits need to be weighed against increased costs. Economists have long recognized the vital role that the pharmaceutical industry plays in this field. Discovery of a new drug is a slow, ex - pensive, and most importantly, uncertain pro - cess. Billions of dollars of upfront investment are needed to develop drugs—both those that succeed and those that fail. Profit-making pri - vate companies need to recuperate not only their research into successful drugs, but also their unsuccessful ones, driving up the prices for the former. On one hand, the patent protec - tion that these drugs enjoy is necessary to incen - tivize their research, but on the other hand, it offers monopoly rights, meaning that they can charge a price as high as the market can sustain. Another area where rapid improvements have been made is biotechnology and biomedical en - gineering, including the use of nanotechnology, Cost—The Main Problem 197 tax. This temporary arrangement became pop - ular and remained in place even after the war, finally being formalized in Internal Revenue Ser - vice (IRS) code in 1954. However, this arrange - ment left out one group of adult populations who were not in the job market—the elderly. Despite an earlier push by the Truman administration in 1949 to start a German-style national social insurance program, which was stopped by in - tense lobbying from various groups including the American Medical Association, there was little option for the retired and their spouses to find private insurance. This led to the second major development in the healthcare landscape beginning 1965, when President Johnson signed Social Security Act Amendments into law. It es - tablished Medicare, a health insurance program for the elderly, and Medicaid, a health insurance program for the poor. Looking at these developments through the lens of some economic insights previously dis - cussed, one observation is that employer-sponsored health insurance can mitigate both adverse se - lection and moral hazard problems to a large ex - tent. When individuals are signing up for one of the insurance plans provided by their employ - ees, they are not selecting the plan based on their health, a problem that is more relevant in the open insurance market, but they are selecting on the basis on their employment contract, of which health benefits are only a part. For large employers, there is likely to be a mix of various types of risk profiles. Obviously, this gets more difficult the smaller the employer gets, as there is likely to be less risk diversity and lower bar - gaining power for the small business. However, a less transparent problem with this arrangement comes from its tax policy aspects.

Pretax funding of employer-sponsored insurance premiums has been one of the driving forces be - hind cost escalation and passive subsidization provided by the federal government. It has also contributed to a slower increase in nominal wage growth in the U.S. How does this happen? Let us first look at the problem from the employer’s view - point. Suppose the employer contemplates a fixed additional amount to the employee cost, either in technological innovation. However, a large part of the innovation comes from the government sector. In fact, the prognosis that price controls may kill all innovation is not necessarily true. A large part of the overall innovation in terms of new drugs, new devices, or new methods, apart from new research insights, come from publicly funded organizations like the National Institute of Health (NIH) and university research labs (Bhattacharya, Hyde, & Tu, 2013).

▸ Health Policy—ACA and Beyond At the time of writing this chapter, the United States is undergoing a fierce health policy debate that, although political in nature, touches upon many topics discussed in this chapter. Should there be an “individual mandate,” in the sense that private individuals should be forced to buy a private product by the government? Or is the question misplaced because health care is not like any other private commodity that is bought and sold in the free market? Should government sub - sidize health care through Medicaid expansion, even though there is some evidence that both doctors and patients can exploit the subsidies by abusing prescription medication? What about the cost? What can policymakers do to control cost yet not create disincentives for innovations? The Patient Protection and Affordable Care Act (ACA), President Barack Obama’s 2010 sig - nature healthcare reform, has been the most sig - nificant change in the health policy landscape in this century. However, it will be worthwhile to step back and look at some of the most consequential changes in health policy in the post–World War II era. During the war, in order to control ram - pant wartime inflation, there was a wage freeze, even for most productive employees. In order to bypass this regulation, employers sought to of - fer health coverage in lieu of wage income and both labor unions and regulators agreed with the War Labor Board exempting employer-paid health benefits from wage controls and income 198 Chapter 9 Healthcare Costs: Follow the Money incentives to order unnecessary procedures. Af - ter the war, even though the Kaiser factories had much fewer workers, when such vertically in - tegrated plans were offered to the public, it be - came both popular and profitable. U.S. health care is still dominated by HMOs. This brings us to the first decade of the 21st century. The healthcare landscape was the fol - lowing—the majority of Americans were get - ting insurance from their employers. The elderly and disabled Americans were covered by Medi - care. And some qualified poor families and chil - dren received care from Medicaid, depending on the generosity of the states they lived in. Fi - nally, some Americans bought coverage directly from the individual insurance market offered by the insurance companies. This left a large num - ber of Americans uninsured, who were not old enough, not poor enough, and not fortunate enough to have a job that offered affordable health benefits. The individual insurance mar - ket was very expensive because of the adverse selection problem. It was probably too expen - sive for many healthy Americans to enroll. At the end of 2010, as many as 79 million Amer - icans were either uninsured or underinsured, defined as those who were insured, yet spent a high share of their income on medical care (Schoen, Hayes, Collins, Lippa, & Radley, 2014). Then came the landmark legislation of ACA in 2010. The mainstay of the law was circum - venting the adverse selection problem in the individual insurance market. It created both employer and individual mandates, where in - dividuals had to buy insurance, or pay a tax penalty. For qualified patients, it offered gen - erous subsidies. It also capped both premium out-of-pocket amounts. Finally, it tried to curb the cost escalation to some extent by imposing a Cadillac tax—whereby employer-sponsored health benefits whose value exceeds specified thresholds—would be subject to an excise tax of 40%. (Note: The actual implementation was first delayed until 2020 and it remains uncer - tain if it will ever take effect). ACA also sought to expand Medicaid significantly by allowing some individuals and families without children extra wage, or in extra benefit. At the margin, an extra dollar in wage would mean around 9 cents more in payroll taxes, whereas an extra dollar in benefits would entail no such additional expense.

Likewise, for the employee, it is better to take the extra dollars in benefit. Obviously, one can - not get paid only in benefits. But there is strong evidence that inflation-adjusted wages have re - mained flat for many workers whereas benefits have increased. The problem is that a more gen - erous health benefit may lead to system-wide cost increases. And despite the best efforts of in - surance companies, the moral hazard problems coming from the providers in terms of unneces - sary tests and procedures can fuel what can po - tentially become an upward spiral—generous tax-free benefits leading to higher cost leading to higher premiums leading to more wage-benefit substitutions—all funded by the federal govern - ment in terms of foregone tax payments. It is worth noting that beyond the tax conse - quences of premium payments substituting wage income, increase in cost affects insurance com - panies also. Insurance companies worry about escalating cost for their own bottom line. Sure, they can pass on some increased cost as higher premium, but as with any other business, they always strive to lower their cost, in this case pay - ments to healthcare providers. This brings us to another major health pol - icy change in the last 50 years or so—the emer - gence of health maintenance organizations (HMOs) and managed care. Starting in the af - termath of the Great Depression and during the World War II, Henry Kaiser, an industrialist, and an entrepreneur-doctor, Sidney Garfield, MD, teamed up to provide insurance to thou - sands of workers who worked in the shipyards of Kaiser-owned companies. Although the con - tract was standard—workers paid premiums for potential future treatments—there was a feature rather unique for the time. The care was provided by doctors and nurses who were also hired by the Kaiser companies at Kaiser-owned facilities, but care provided outside of this network was not covered. Kaiser could keep the costs down because the doctors had fixed payments and no Health Policy—ACA and Beyond 199 healthcare sector is only 6%. With Medicare, it had a slew of cost-saving regulations like re - duced payment rates and cutting down admin - istrative clutter. With the Cadillac Tax, it sought to undo some of the damages done by the blan - ket tax break on expensive employer-sponsored health insurance premiums. (Note: A more ef - ficient tax policy would be to scale back some of the tax breaks, but the political economy of taxation is often driven by politics and not eco - nomics). In the individual markets, the idea was that various insurance companies would com - pete with each other in the individual insurance markets or exchanges, as they were called, driv - ing down the premiums and copays. To be clear, the politics surrounding ACA is complex and it is impossible to evaluate this piece of health policy without getting into all the turmoil that its implementation and contin - uation faces until today. However, it was largely built on economic insights and the failure to re - peal it shows that such insights can actually be embedded into a resilient health policy.

Discussion Questions 1. In what ways can health care be different from other consumer purchases? Provide examples for both goods and services. 2. Critically evaluate the statement: “High and growing cost remains the most important challenge in the U.S. health care sector.” 3. Briefly discuss two major health policy changes that took place in the U.S. over the last five decades. 4. What are the challenges of a market-driven healthcare system and how can public and private insurance markets control premiums and co-payments? References American Hospital Association (AHA). (2013). Setting the record straight on TIME’s article “bitter pill.” Retrieved from http://www.aha.org/content/13/settingrecordstraight .pdf (accessed August 2, 2017). Arrow, K. J. (1963). Uncertainty and the welfare economics of medical care. American Economic Review , 53, 941–973. to be covered. Such expansion, including sub - sidies, was planned to be funded by a couple of new taxes.

▸ Conclusion At the time of writing this chapter, the U.S. Con - gress has tried and failed to repeal ACA. It has, however, successfully eliminated the individ - ual mandate through the tax reform legislation.

How that will have an impact on financing the rest of the ACA is still unknown at this time. It is worthwhile to look at that process through the lens of market principles and following the money. ACA was mainly built on free market principles. It explicitly tried to solve the adverse selection problem by mandating that individ - uals need to buy insurance. This was an unusual policy stance—government forcing private indi - viduals to buy private goods. However, it is clear that health care is different from all other pri - vate goods, so needs special treatment. More - over, any repeal effort that does not include the individual mandate is likely to fall prey to the adverse selection problem and rising premiums knocking many of the newly insured people off insurance once again. The same is true for the employer mandate also. The Medicaid expan - sion was straightforward. The effect of Medic - aid expansion on health outcomes and health services use is mixed. Results from the famous Oregon experiment suggest that while use of health services increased for Medicaid enroll - ees, the outcomes were not significantly better.

However, other studies that compare expan - sion with nonexpansion states show that Med - icaid expansion improved outcomes (Miller & Wherry, 2017). Unfortunately, the role of ACA in deal - ing with the major problem of cost escalation is still unclear (Weiner, Marks, & Pauly, 2017).

The two areas where ACA tried to control cost are Medicare and the “Cadillac Tax” (expensive employer-sponsored premiums). Even though the largest impact of ACA was on the individual market, the share of that market in the overall 200 Chapter 9 Healthcare Costs: Follow the Money Miller, S., & Wherry, L. R. (2017). Health and access to care during the first 2 years of the ACA Medicaid expansions. New England Journal of Medicine , 376(10), 947–956. Newhouse, J. P., Manning, W. G., Morris, C. N., Orr, L. L., Duan, N., Keeler, E. B., & Brook, R. H. (1981). Some interim results from a controlled trial of cost sharing in health insurance.  New England Journal of Medicine , 305 (25), 1501–1507. Organisation for Economic Co-operation and Development (OECD). (2017). Health expenditure . Retrieved from http:// www.oecd.org/els/health-systems/health-expenditure.htm Schoen, C., Hayes, S. L., Collins, S. R., Lippa, J., & Radley, D. (2014). America’s underinsured: A state-by-state look at health insurance affordability prior to the new coverage expansion . New York, NY: The Commonwealth Fund. Retrieved from http://www.commonwealthfund.org/publications/fund -reports/2014/mar/americas-underinsured (accessed August 2, 2017). United Nations Programme on HIV/AIDS (UNAIDS) (2017) Fact sheet—Latest statistics on the status of the AIDS epidemic . Retrieved from http://www.unaids.org /en/resources/fact-sheet (accessed September 25, 2017). Weiner, J., Marks, C., & Pauly, M. (2017). Effects of the ACA on health care cost containment.  LDI Issue Brief , 24(4), 1. Williams, D. R. (1999). Race, socioeconomic status, and health: The added effects of racism and discrimination.  Annals of the New York Academy of Sciences , 896 (1), 173–188. Williams, D. R., Neighbors, H. W., & Jackson, J. S. (2003). Racial/ethnic discrimination and health: Findings from community studies.  American Journal of Public Health , 93(2), 200–208. World Bank. (2017). World development indicators 2017 . Washington, DC: Author. © World Bank. Retrieved from https://openknowledge.worldbank.org/handle/10986 /26447. License: CC BY 3.0 IGO. Baicker, K., & Finkelstein, A. (2011). The effects of Medicaid coverage—learning from the Oregon experiment.  New England Journal of Medicine , 365 (8), 683–685. Becker’s Hospital Review. (2014, March 17). 8 statistics on hospital capacity . Retrieved from http://www .beckershospitalreview.com/patient-flow/8-statistics -on-hospital-capacity.html (accessed August 2, 2017). Bhattacharya, J., Hyde, T., & Tu, P. (2013).  Health economics . Basingstoke, UK: Palgrave Macmillan. Brill, S. (2013, February 20). Bitter pill: Why medical bills are killing us.  Time , 181 (8), 16–55. Centers for Medicare & Medicaid Services (CMS). (2014). Bundled Payments for Care Improvement (BPCI) initiative: General information . Centers for Medicare & Medicaid Services. Retrieved from http://innovation.cms.gov /initiatives/bundled-payments/ (accessed August 6, 2017). Centers for Medicare & Medicaid Services. (2015). National health expenditures 2016 highlights . Retrieved from https:// www.cms.gov/research-statistics-data-and-systems /statistics-trends-and-reports/nationalhealthexpenddata /downloads/highlights.pdf Center for Responsive Politics (2016) Health sector profile . Retreived from https://www.opensecrets.org/lobby /indus.php?id =H&year =2016 (accessed August 2, 2017). Cutler, D. M., McClellan, M., Newhouse, J. P., & Remler, D. (1998). Are medical prices declining? Evidence from heart attack treatments.  The Quarterly Journal of Economics , 113 (4), 991–1024. Fidelity Investments. (2018). Health Care Snapshot . Re - triev ed from https://eresearch.fidelity.com/eresearch /markets_sectors/sectors/sectors_in_market.jhtml?tab =industries&sector=35 Grossman, M. (1972). On the concept of health capital and the demand for health.  Journal of Political Economy , 80(2), 223–255. Lafortune, G., & Moreira, L. (2015). Trends in supply of doctors and nurses in EU and OECD countries. OECD Indicators. Paris, France: OECD Publishing. 201 References fee-for-service payment (CMS, 2017a). Under the Quality Payment Program, clinicians are rewarded for giving high-quality and high-value care in one of two ways: (1) the Merit-based Incentive Payment System (MIPS), or (2) advanced alternate payment models (APMs). Providers can choose, if they are eligible, one of these payment systems (clinician participation in either of these programs is based on practice size, specialty, location, or patient population). If they decide to participate in MIPS, they will earn a performance-based payment adjustment if they participated in the Quality Payment Program in 2017 or if they bill Medicare more than $30,000 in Part B allowed charges a year and provided care for more than 100 Medicare patients a year. Clinicians participating in MIPS, including physicians, physician assistants (PAs), nurse practitioners (NPs), clinical nurse specialists (CNSs), certified registered nurse anesthetists (CRNAs), and a group that includes such clinicians, will earn a performance-based payment adjustment to their Medicare payment.

This payment adjustment is based on a MIPS final score that assesses evidence-based and practice-specific quality data in the following four categories: (1) quality, (2) cost, (3) improvement activities, and (4) advancing care information.

Based on eligibility, each participating provider who submits payment data for Medicare reimbursement has been tasked to submit a plan of selected outcome measures that target select patient groups in the practice to be paid for their performance of meeting goals. This pay-for-performance approach weights the reimbursements that will incentivize quality over quantity. FIGURE 9-4 provides an example of the advice provided to clinicians by the Centers for Medicare & Medicaid Services (CMS) for the timing of participating in the payment process.

Quality Control To answer the question about how the Quality Payment Program will change providers’ Medicare payments, the response from CMS is that it depends on the data submitted by March 31, 2018. For example, for 2019, based on 2018 data, Medicare payments will be adjusted up, down, or not at all. This will continue over the subsequent years, taking into account new definitions and CASE STUDY Quality-Based vs. Quantity-Based Incentive Payment Approaches:

MACRA and MIPS Olga S. Kagan and Veronica D. Feeg The Medicare Access & CHIP Reauthorization Act of 2015 (MACRA), a bipartisan legislation signed into law on April 16, 2015, established the Quality Payment Program. The Quality Payment Program: (a) repealed the Sustainable Growth Rate (SGR) formula that was in effect in which Medicare physician payment rate calculations were based on fee-for-service reflected in increased enrollment and changes in physician fees; (b) changed the way that Medicare rewards clinicians for value over volume; (c) streamlined multiple quality programs under the new Merit- based Incentive Payment System (MIPS); and (d) gave bonus payments for participation in eligible alternative payment models (APMs) (CMS, 2016a). “ These changes were designed to stimulate provider delivery of services rewarded for quality of services based on outcomes rather than quantity of services in the fee-for-service reimbursement methods. This new program streamlines current pay for reporting and pay for performance programs with a single system where you can be rewarded for better care. You’ll be able to practice as you always have, but you may receive higher Medicare payments based on your performance” (CMS, 2016b, p. 1). The Quality Payment Program is a new way to pay clinicians, as well as offer clinicians tools and resources to help provide patients participating in Medicare the best possible care. The Quality Payment Program takes a comprehensive approach to payment by basing consideration of quality on a set of evidence -based measures that were primarily developed by clinicians, thus encouraging improvement in clinical practice and supporting by advances in technology that allow for the easy exchange of information. The Quality Payment Program also offers special incentives for those participating in certain innovative models of care that provide an alternative to 202 Chapter 9 Healthcare Costs: Follow the Money CASE STUDIES Phased-In Scoring for Payments The Quality Payment Program was slated to phase in since the enactment of MACRA in 2015.

Phase-in guidance has been made available to clinicians with tools to establish measures and ease of reporting. The following is a CMS interpretation of two payment paths available to technicians: 1. Pick your pace in MIPS : If you choose the MIPS path of the Quality Payment Program, you have three options ( FIGURE 9-5). 2. Participate in the advanced APM path : If you receive 25% of Medicare payments or see 20% of your Medicare patients through an advanced APM in 2017, then you earn a 5% incentive payment in 2019. The cycle of the program is shown in FIGURE 9-6. conditions modified over time by CMS. Payment incentives are estimated to give providers an increase in Medicare reimbursements when they optimize their services and minimize their frequency or former fee-for-service visits and tests.

With this new measurement system, payment is based on performance measures (scores) and participation, with expectation that the system will be phased in over subsequent years to change all Medicare payments based on this approach.

Electronic health records (EHRs) and CMS electronic tools are available to assist providers with calculations. Additionally, nonparticipation of providers can result in negative incentives for Medicare payments. In simple terms, providers are rewarded for quality and adjusted negatively for failing to comply when the program is fully implemented.

PerformanceYear 2017 Performance:

The first performance period opens January 1, 2017 and closes December 3\ 1, 2017.

During 2017, record quality data and how you used technology to support \ your practice.

If an Advanced APM fits your practice, then you can join and provide car\ e during the year through that model.

Submit March 31 2018 2018 feedback available Adjustment January 1, 2019 Send in performance data:

To potentially earn a positive payment adjustment under MIPS, send data \ about the care you provided and how your practice used technology in 2017 to MIPS by th\ e deadline, March 31, 2018. In order to earn the 5% incentive payment by significant\ ly participating in an Advanced APM, just send quality data through your Advanced APM.

Feedback:

Medicare gives you feedback about your performance after you send your d\ ata.

Payment:

You may earn a positive MIPS payment adjustment for 2019 if you submit 2\ 017 data by March 31, 2018. If you participate in an Advanced APM in 2017, then you \ may earn a 5% incentive payment in 2019.

FIGURE 9-4 Timing of participating in the payment process Data from Centers for Medicare & Medicaid Services. (n.d.). Quality Payment Program . Retrieved from https://qpp.cms.gov/ Case Study 203 CASE STUDIES MIPS-eligible clinicians in an off-campus outpatient hospital. Additional points were announced: Complex patients bonus. Clinicians can earn up to five bonus points for the treatment of complex patients (based on a combination of the Hierarchical Condition Categories [HCCs] and the number of dually eligible patients treated). Small practice bonus. Five points are added to any MIPS-eligible clinician or small group in a small practice (defined as 15 Deadlines and Changes Over Time Several changes have already been added to the implementation of the Quality Payment Program.

These changes are made as notifications and updates on the CMS website. For example, the new deadline was established of December 31st for the performance period for the submission of reweighting applications beginning with the 2017 performance period. The definition of hospital- based MIPS-eligible clinician was revised to include covered professional services furnished by 2017 +/– 4% +/– 5%+/– 7% +/– 9% 2018 2019 2020 20212022 FIGURE 9-6 Advanced APM path program cycle Data from Centers for Medicare & Medicaid Services. (n.d.). Quality Payment Program . Retrieved from https://qpp.cms.gov/ FIGURE 9-5 Pick your pace for MIPS plan Data from Centers for Medicare & Medicaid Services. (n.d.). Quality Payment Program . Retrieved from https://qpp.cms.gov/ Not participating in the quality pa yment program:

If yo u don’ t send in an y 2017 data, then y ou receive a negative 4% pa yment adjustment.

T est:

If y ou submit a minimum amount of 20 17 data to Medicar e (for exa mple, one qualit y measure or one impr ovement activit y for an y point in 20 17), y ou can av oid a downwa rd pa yment adjustment.

Pa rtial:

If y ou submit 90 da ys of 20 17 data to Medicar e, yo u ma y earn a neutral or positiv e payment adjustment and ma y even ear n the max adjustment.

F ull:

If y ou submit a full y ear of 2017 data to Medicar e, yo u ma y ear n a positive pa yment adjustment.

– % 0% + % + % 204 Chapter 9 Healthcare Costs: Follow the Money CASE STUDIES stool that supports our healthcare system, remain fundamentally and ideologically different. What is clear is that as the arguments shift in public support and policy, cost often remains a driver in decision making in publicly funded health care.

One should follow the money to understand more broadly the underlying policy changes that lie ahead.

Case Study Questions 1. What does the Medicare change in payments to providers mean in terms of delivery of services? 2. How does the Quality Payment Program impact on payment to nurses and other providers who provide services to Medicare patients? How do you think quality will be improved? 3. What ways can clinicians choose to participate in the Quality Payment Program? 4. Based on the current ruling, and final score calculations for 2017 transition year and 2018 MIPS performance year score, what would you anticipate will occur in the future? 5. How likely do you believe that Medicare financial incentives planned for quality improvement and cost reduction will be repealed or modified in the current administration and why? References AANA (2017). 2018 MIPS cost performance category fact sheet. Retrieved from https://www.aana.com/docs/default -source/ofs-aana-com-web-documents-(all)/2018_mips _cost_fact_sheet_version_1.pdf?sfvrsn 5177740b1_2 Centers for Medicare & Medicaid Services (CMS), U.S. Department of Health and Human Services. (2015). The Medicare Access & CHIP Reauthorization Act of 2015 path to value. Retrieved from https://www.cms.gov/Medicare /Quality-Initiatives-Patient-Assessment-Instruments /Value-Based-Programs/MACRA-MIPS-and-APMs /MACRA-LAN-PPT.pdf Centers for Medicare & Medicaid Services (CMS), U.S. Department of Health and Human Services. (2016a). Medicare value-based Programs: MACRA, MIPS, and APMs. Retrieved from https://www.cms.gov/Medicare /Quality-Initiatives-Patient-Assessment-Instruments /Value-Based-Programs/MACRA-MIPS-and-APMs /MACRA-MIPS-and-APMs.html Centers for Medicare & Medicaid Services (CMS), U.S. Department of Health and Human Services. (2016b). MIPS APMs in the Quality Payment Program fact sheet. Retrieved from https://www.cms.gov/Medicare/Quality or fewer eligible clinicians), as long as the MIPS-eligible clinician or group submits data on at least one performance category in an applicable performance period. Changes Beyond Adjustments Despite the adjustments made to the Quality Payment Program in year 2, including more flexibility, new incentives for participation, and free hands-on technical assistance with full implementation in year 3, U.S. Secretary of Health and Human Services Alex Azar proposed reduction or elimination of MIPS reporting requirements to the Centers for Medicare & Medicaid Services (Reid, 2018). This response was formulated based on clinicians’ citing requirements to be burdensome and expensive, taking time away from patient care.

Suggestions include using claims data and patient surveys to grade doctors in the program instead of having to report patient data by MIPS-participating clinicians. Another proposal is to introduce a voluntary value program in which physicians could be assessed in a group. Paul Ginsburg from the Brookings Institution and a member of the Medicare Payment Advisory Commission (MedPAC) believes that the reporting requirements under MIPS are ineffective at improving care because doctors can choose the quality measures to be graded on by the government. MedPAC, a congressional advisory board that has 17 members, approved a proposal in January calling on the U.S.

Congress to replace MIPS with a voluntary value program in which physicians could be assessed in a group (Reid, 2018). However, until further decisions are made, the current ruling stands.

MIPS-participating clinicians who receive a high score would be eligible for bonus payments from Medicare, while those who score poorly would be penalized. Clinicians who do not submit any data automatically will receive the lowest score. At this time, it is uncertain how the pendulum will swing with challenges to underlying politics of pro- and antiregulatory groups that impact how healthcare services are paid for by the government. The principled development of incentivizing quality while decreasing costs will continue in debates at the federal, state, and local levels; however, the approaches will differ. At the same time, the arguments for access, often called the “third leg” of the cost-quality-access 205 Case Study CASE STUDIES -Payment-Program/Resource-Library/MIPS-APMs-in -the-Quality-Payment-Program.pdf Centers for Medicare & Medicaid Services (CMS), U.S. Department of Health and Human Services. (2017a). Quality Payment Program year 2: Final rule overview fact sheet . Retrieved from https://www.cms.gov/Medicare /Quality-Payment-Program/resource-library/QPP-Year -2-Final-Rule-Fact-Sheet.pdf Centers for Medicare & Medicaid Services (CMS), U.S. Department of Health and Human Services (2017b). Quality Payment Program: Executive summary . Retrieved from https:// www.cms.gov/Medicare/Quality-Payment-Program /Resource-Library/QPP-Year-2-Executive-Summary.pdf Centers for Medicare & Medicaid Services (CMS), HHS (2017c). Quality Payment Program: Merit-Based Incentive Payment System (MIPS): Episode-based cost measure field test reports fact sheet. Retrieved from https://www.cms.gov/Medicare /Quality-Initiatives-Patient-Assessment-Instruments /Value-Based-Programs/MACRA-MIPS-and-APMs/Cost -Measures-Field-Test-Fact-Sheet.pdf Reid, J. (2018, February 15). HHS may nix reporting requirements for value-based care program, Azar says. Morning Consult. Retrieved from https://morningconsult.com/2018/02/15 /hhs-may-nix-reporting-requirements-for-value-based -care-program-azar-says/ 206 Chapter 9 Healthcare Costs: Follow the Money CASE STUDIES © Anthony Krikorian/Shutterstock Private Health Insurance Market Dr. Joyce A. Hahn OVERVIEW Like other developed countries in the world, in the United States there are both private and public health insurers. What makes the U.S. healthcare system unique has been the dominance of private insurers. Private health insurance creates access to health services and thus improves health by protecting individuals from financial loss due to the high cost of medical expenditures. Health insurance covers a broad range of benefit plans that reflects the ways in which health insurance is organized to pay for a wide array of health services. The health insurance plan not only specifies how and where the healthcare services will be provided, but also functions as the claims processor by managing payment of funds to the providers of the healthcare services. The employer-based private healthcare insurance model gained dominance during the Second World War. An implicit “social contract” was developed between the government, employers, and employees to offer health insurance as an employment benefit. With wages frozen, companies had limited financial resources to offer employees. Health insurance benefits provided a competitive advantage when recruiting and retaining employees. Companies were further encouraged to offer health insurance as an employee benefit as expenditures for healthcare expenses were exempted from income tax. This practice laid the groundwork for employer-based health insurance plans (Zhou, 2009).

This model has resulted in the U.S. being one of the only industrialized nations that does not offer universal coverage through some combination of private and public enrollment. The consequence of an employer-based system of health insurance where employers are not mandated to provide coverage is that employers can choose who to cover and whether or not to provide coverage at all. As healthcare costs have risen there has been a steady decline in the percentage of Americans covered by employer-based insurance policies. As the number of uninsured grew, the federal government felt the political momentum for reform that resulted in the passage of the Patient Protection and Affordable (continues) 207 CHAPTER 10 ▸ History of U.S. Health Insurance Reform The first insurance plans became available in the United States during the Civil War. These early accident insurance plans covered personal injury related from travel by rail or steamboat.

These first plans paved the way for more inclu - sive plans, which covered illness and injury and were the precursor to disability plans. The first group policy giving comprehensive benefits was offered by Massachusetts Health Insurance of Boston in 1847. These first group plans working with healthcare providers would serve to be the predecessors to the fee-based contracts of today’s modern health insurance plans (Zhou, 2009). Prior to the 1920s Americans distrusted the quality of medical care received in hospitals and patients were treated at home by their families and attended by family physicians. Medical ad - vances such as the development of X-ray tech - nology, blood pressure monitoring devices and the identification of disease-causing organisms served to increase confidence in the healthcare system. By the late 1920s, the cost of health care began to rise given the increased use of techno - logically based services being provided in medical facilities (Economics History Association, n.d.). The economic reality of the Great Depres - sion brought home the impact of rising health - care costs. Hospitals faced falling revenues as individuals could not afford the cost of care.

Health insurance was created to finance their costs. In 1929, Dr. Justin Ford Kimball of Bay - lor University in Texas introduced a medical insurance plan called the Baylor Plan to al - low teachers to prepay $.50/month for 21 days of semi-private hospitalization at Baylor Hos - pital. Rather than have each hospital compete for employer contracts, the American Hospital Association (AHA) hired Rufus Rorem to pro - mote hospital prepayment and seek the neces - sary enabling legislation to create a special class of nonprofit corporations that could sell hos - pital insurance. In 1934, New York became the OBJECTIVES ■ Explain the historical evolution of private health insurance and managed care into a healthcare industry. ■ Identify the key federal laws and their impact on the insurance industry. ■ Identify the key federal laws that protect individuals enrolled in private insurance. ■ Understand consumer-driven health care and the empowerment of the healthcare consumer. ■ Examine the impact of the Affordable Care Act (ACA) on the private insurance industry. ■ Explore the emerging opportunities for nursing practice within the private insurance market. Care Act (ACA). The ACA has served to bring healthcare insurance to those workers not covered by employer-based plans and the uninsured Americans. This chapter will provide an overview of the private health insurance industry in the U.S. beginning with the historical evolution of private insurance and managed care, the identification of the key federal laws and their impact on the insurance industry, and the rise of consumer-driven health care and the empowerment of the healthcare consumer. The impact of the ACA will be examined at this dynamic time in healthcare history.

OVERVIEW (continued) 208 Chapter 10 Private Health Insurance Market first state to offer such hospital insurance cov - erage. These plans were promoted by the AHA.

In 1938 the Blue Cross Commission of the AHA began a formal approval process for plans and only those endorsed plans could use the Blue Cross symbol and name (Massachusetts Asso - ciation of Health Plans, n.d.). This was the ori - gin of Blue Cross, which was a hospital-driven insurance plan. The American public welcomed Blue Cross as a hospital-driven insurance plan but now pres - sured employers for a medical insurance plan to cover physician costs. Blue Shield was estab - lished as physicians were pressured to offer an insurance product and was organized under the auspices of the American Medical Associa - tion (Blue Cross Blue Shield, 2017; Zhou, 2009). The financial successes of Blue Cross and Blue Shield as health insurance compan - ies spurred the development of additional pri - vate insurance companies. By the 1960s these additional private insurance competitors con - trolled more than 50% of the healthcare insur - ance market, decreasing the domination of Blue Cross and Blue Shield. The success of the com - peting private plans resulted from their lower costs. Blue Cross offered a service contract—a fixed quantity of service for a fixed price. Pri - vate insurers offered indemnity plans—a cash amount towards a particular medical service.

Ultimately Blue Cross was forced to offer in - demnity plans in order to remain competitive. Starting in the 1930s, an alternative way of organizing and financing healthcare delivery was introduced called a health maintenance organi - zation (HMO). Henry Kaiser, an American en - trepreneur who owned shipyards and factories on the west coast, began to offer his employees the opportunity to prepay for health care for a few cents a day (Kaiser Permanente, n.d.). This unique employer-based health insurance sys - tem not only evolved into the largest HMO in the world, it also established the foundation for many government and private healthcare payment innovations that followed (Kaiser Permanente, n.d.). In addition to Kaiser, which was organized by a major business, HMOs were organized in other parts of the country by other stakehold - ers. Group Health Cooperative in Puget Sound, Washington was organized by members of the Grange, the Aero Mechanics Union, and local supply and food cooperatives. The Health In - surance Plan of Greater New York (HIP) is an example of a government-managed care plan or - ganized when Fiorello LaGuardia was mayor of New York City (HealthPlanOne, 2016). Within the HMO paradigm, patient care is coordinated by a primary doctor who cares for the patient and determines if referral to a spe - cialist within a provider network is required (HealthInsurance.org, 2018). HMO enrollees are entitled to comprehensive and continuous ser - vice for a fixed payment. Until the 1970s, HMOs comprised a limited part of the market meeting stiff competition from local medical societies.

In 1970, the federal government recognized the potential of HMOs as a way to control costs and improve the quality of care. In the 1980s, the same potential was recognized by the private insurance industry. What had been organized under the umbrella of nonprofit organizations like Kaiser was now being virtually organized by the pri - vate insurance industry. The term managed care replaced the term health maintenance organiz - ation in the lexicon. What is important about the growth of managed care in the late 1980s is that it was a progressive strategy to provide ac - cess, a business strategy to control costs, a gov - ernment strategy to control costs and achieve access, and a political strategy to avoid national health insurance.

▸ Health Insurance Plans Today over 150  million Americans rely on their employers or the Health Insurance Ex - change Marketplace for health benefits. Em - ployers provide health insurance as a benefit package for employees. Citizens not covered by employer-sponsored plans can purchase health insurance directly from the Health Insurance Marketplace. The Health Insurance Market - place is a key provision of the Affordable Care Health Insurance Plans 209 offering traditional indemnity insurance, or a variety of models that fall under the heading of managed care plans such as a health maintenance organization (HMO), preferred provider orga - nization (PPO), or point-of-service (POS) plan. Examples of some historical key innova - tive approaches to healthcare insurance are pro - vided in TABLE 10-1. Act that operates as a service to help citizens shop for and enroll in affordable health insur - ance. The federal government has oversight of the Marketplace through a website (available at www.healthcare.org), which offers health plan shopping, enrollment services, and call cen - ters (Centers for Medicare & Medicaid, n.d. a).

These private health insurance plans are varied, TABLE 10-1 Historical Timeline of Payment Reform Efforts Year Reform Goal Sponsor 1929 Blue Cross a Designed to reimburse hospitals for expenditures. American Hospital Association (AHA) 1935 Social Security b Passed during the Great Depression providing old-age benefits and increased federal assistance for public health services; a provision to include national health insurance was omitted due to physician opposition. President Franklin D. Roosevelt 1939 Blue Shield a A plan for physician reimbursement for healthcare services. American Medical Association (AMA) 1965 Title XVIII of the Social Security Act – Medicare c Provides health insurance to individuals over age 65, and under age 65 with permanent disabilities. President Lyndon B. Johnson 1965 Title XIX of the Social Security Act – Medicaid b Covers health expenditures for impoverished Americans. President Lyndon B. Johnson 1973 Health Maintenance Organization Act b Predecessor of managed care. President Richard M. Nixon 1985 Consolidated Omnibus Budget Reconciliation Act (COBRA) d Provides continued coverage for healthcare costs when coverage from an employer-based group health plan ends due to job loss. President Ronald Reagan 1993 National Health Security Act b Proposed universal healthcare coverage for all Americans. Never voted on by Congress. President William Clinton 210 Chapter 10 Private Health Insurance Market Indemnity insurance is also known as fixed benefit insurance or fee-for-service (FFS) in - surance (Aetna, 2017; Fernandez, 2011; United HealthCare, 2017).

Health Maintenance Organization Healthcare service delivery and financing are integrated under managed care. In the original health maintenance organizations (HMOs), in - dividuals joined group practices where their in - surance premiums provided the budget to cover the cost of operating the group. Physicians were Indemnity Insurance Indemnity insurance plans make a fixed cash payment toward a particular medical expense based on what services are covered and what reimbursement method is used by the insur - ance company. An insured person makes the decision when and from whom to seek health services. The provider, if services are covered under the health plan, submits a claim with the insurer retrospectively after services have been provided for payment. With this model of healthcare delivery, the individual carries the risk for covering the cost of his or her care.

Deductible and coinsurance fees can still apply.

Data from [1] Blue Cross Blue Shield (2017). The history of the Blue Cross Blue Shield System. Retrieved from http://www.bcbs.com/about-the-association/; [2] Sultz, H.A. & Young, K.M. (2014). Health Care USA: Understanding its Organization and Delivery. 8th Ed. Maryland: Aspen Publishers; [3] Neuman, T. (2009). Medicare 101 Tutorial. Retrieved from: http:/kff.org/interactive/medicare- 101-tutorial; [4] SASid. (2007). Cobra Law Information. Retrieved from http://www.cobrainsurance.com/COBRA_Law.htm; [5] US Dept. of Labor (2015). Monthly Labor Review; April, 2015. The National Compensation Survey and the Affordable Care Act in health care data. Retrieved from https://www.bls.gov/opub/mlr/2015/article/the-national-compensation-survey-and-the -affordable-care-act-preserving-quality-health-care-data.htm Year Reform Goal Sponsor 1993 Family Medical Leave Act (FMLA) b Allows employees up to 12 weeks of leave for the birth of a child, adoption, or family illness. President William Clinton 1996 Health Insurance Portability and Accountability Act (HIPAA) b Prohibits insurance companies from denying healthcare coverage for preexisting conditions. Senator Edward Kennedy; Senator Nancy Kassenbaum 1997 State Children’s Health Insurance Program (SCHIP) b Initiative that funds healthcare coverage for children from low-income families whose family income is too high to qualify for Medicaid. Senator Edward Kennedy; Senator Orrin Hatch 2003 Medicare Prescription Drug Improvement & Modernization Act c Medicare Part D, provides a prescription plan for the elderly. President William Clinton 2010 Affordable Care Act (ACA) e Provides healthcare coverage for all Americans beginning January 2014. President Barack Obama Health Insurance Plans 211 Consumer-Driven Health Plan The consumer-driven health plan (CDHP) is one of the most recent innovations in the in - surance market that seeks to control costs by empowering healthcare consumers to make per - sonal decisions about their coverage. As health - care expenditures and insurance plan premiums increase, both employers and employees were seeking alternatives to high-cost insurance coverage. The theory behind consumer-driven plans is twofold. First, there is an overuse of ser - vices because individuals do not know the cost of services and do not carry substantial finan - cial risk in terms of being responsible for pay - ing for services. Second, healthcare consumers are becoming better educated in terms of their knowledge of personal healthcare services and costs. Because consumers are at risk, they will make more cost-effective decisions about the care they receive. One concern, however, is that patient care is typically driven by physicians and patients do not have adequate information to discern between cost and quality. A CDHP is a combination of a high-deductible plan with a pretax payment account, as described in TABLE 10-2. High-Deductible Health Plan A high-deductible health plan (HDHP) has a lower premium, a higher deductible, coinsur - ance, and out-of-pocket maximums for the in - sured to pay before receiving coverage. The insured will pay out of pocket for care, exclud - ing the preventive care allowed under ACA, un - til the deductible is met. Once the deductible is met the plan will pay for benefits that are based on the coinsurance level. These plans provide catastrophic coverage guarding against major medical cost. The lower premiums translate into cost savings for both the employer and the employee. An important feature that dis - tinguishes the HDHP from a traditional plan is the ability for the enrolled person to open a health savings account (HSA) that can be used to pay for the medical expenses incurred typically salaried so their costs were known.

Costs were controlled within the managed care organizations by restricting enrollee access to in-network providers who agreed to accept a discounted fee-for-service payment. HMOs typically won’t cover out-of-network care ex - cept in an emergency. An HMO can require their enrollees to live or work in its service area to be eligible for coverage. Enrollees need pri - mary care physician approval to access specialty care, a process known as gatekeeping. Precerti - fication is required for routine in-hospital care.

Disease management or care management co - ordinates care for enrollees with certain medi - cal conditions. A distinguishing feature of the managed care approach is the emphasis on pre - ventive health and the quality assurance pro - cesses (Fernandez, 2011, Centers for Medicare & Medicaid, n.d. b).

Preferred Provider Organization A preferred provider organization (PPO) plan offers individuals a hybrid insurance policy that combines the benefits of indemnity and man - aged care. The PPO will enter into contractual arrangements with providers and creates pro - vider networks. If a patient uses a preferred provider, the cost of services is heavily dis - counted. If a patient uses out-of-network pro - viders, PPO insurers will cover a portion of out-of-network providers charge depending on the plan. PPOs have an out-of-pocket de - ductible for the enrollee (U.S. Bureau of Labor Statistics, 2002).

Point-of-Service Plan A point-of-service (POS) plan is another hybrid insurance policy that loosens the gatekeeping re - strictions imposed by HMOs. The “point of ser - vice” reflects the ability for enrollees to decide which provider they will see without receiving prior authorization from a primary care pro - vider. Rules are generally similar to an HMO with the ability to see an out-of-network provider for a fee (U.S. Bureau of Labor Statistics, 2002).

212 Chapter 10 Private Health Insurance Market HSA become the property of the policyholder, regardless of the source of the deposit. Funds deposited but not withdrawn each year will carry over into the next year. If the policyholder ends their HSA-eligible insurance coverage, he or she loses eligibility to deposit further funds, but funds already in the HSA remain available for use (U.S. Department of the Treasury, 2013; Congressional Budget Office, 2016).

Health Reimbursement Arrangement The health reimbursement arrangement (HRA) account can only be funded by the employer. No pretax dollars from the employee can be added to the account. Money in the HRA can only be used for medical expenses. Any unused funds will roll over from one year to the next. It is not necessary for an employee to be enrolled in a high-deductible health plan (HDHP) to par - ticipate (U.S. Bureau of Labor Statistics, 2010). under the deductible. HDHPs are considered consumer-driven health plans allowing the con - sumer control over healthcare spending (Health Insurance Resource Center, n.d.).

Health Savings Account Health savings accounts (HSAs) were created by the U.S. Congress in 2003 so that individ - uals covered by high-deductible health plans (HDHP) could receive tax advantages for money saved to cover personal medical expenses. Funds placed in an HSA are not subject to federal in - come tax or payroll taxes at the time of deposit and are referred to as pretax dollars. An HSA is the account holder’s individual account and can be used to pay for qualified medical and phar - macy expenses. The account can be funded by the employer or employee with pretax dollars up to a statutory limit that varies yearly. An HSA plan includes a deductible, but enrollees can use their HSA to pay for out-of-pocket expenses be - fore they meet the deductible. All deposits to an TABLE 10-2 Comparison of Pretax Savings Plans Type of account Pretax employee contribution allowed Employer contribution allowed Rollover allowed Account must be linked with HDHP Health savings account (HSA) Ye s Ye s Ye s Ye s Health reimbursement arrangement (HRA) No contribution allowed from the employee Ye s Ye s No Flexible spending account (FSA) Ye s Ye s No No HDHP 5 high-deductible health plan. Data from US. Department of Labor (2010) Bureau of Labor Statistics. Compensation and Working Conditions. Consumer-Driven Health Care: What is It and What does it mean for employees and employers? Retrieved from https://www.bls.gov/opub/mir/cwc/consumer-driven-health-care-what-is-it-and-what -does-it-mean-for-employees-and-employers.pdf Health Insurance Plans 213 Employer-sponsored health insurance is financed both through the employers who shoulder the larger burden of the premium and employees who pay the remainder of the premium. As the cost of health insurance has risen, employers have shifted a larger percent - age of the costs of plans onto workers. Work - ers on average are now paying $5,277 toward their family coverage and $1,129 for single cov - erage premiums, according to the Kaiser Fam - ily Foundation Health Research & Educational Trust 2016 Employer Health Benefits Survey:

Health Plan Administration. To further control the cost of health insurance, employers are in - creasing cost sharing for services. Employees are experiencing higher plan deductibles and larger copayments at the time of healthcare provider service. These higher costs have served to fuel the political debate about the shortcomings of the insurance changes by ACA. Insurance pre - miums and deductibles continue to rise and the American public is contacting their con - gressmen to voice their displeasure and con - cern and ask for help. Health insurance plans are administered by private and nonprofit companies; some well-known plans are Aetna, Cigna, United HealthCare, and Blue Cross Blue Shield. Employers send premi - ums directly to the insurance company, a system known as group market health insurance. The premium is a set fee for the employer based on estimates of the costs that will be incurred by a particular group of employees. The cost of the premium is typically divided between the em - ployer and the employee with employees paying an ever-increasing percentage due to deduct - ibles and copayments. The insurance company provides underwriting, claims processing, pay - ments to providers, and negotiating agreements with providers. Many larger companies, in an effort to con - tain costs, choose to be self-insured. When a health plan is self-insured, companies negotiate agreements with providers, and the employer sets aside funds to pay for health benefits directly.

These plans are administered by an intermedi - ary (can be a private health insurance company), Flexible Savings Account A flexible spending account (FSA) allows em - ployees to arrange with their employer to set aside pretax dollars from their paycheck for out-of-pocket medical expenses. These expenses could include insurance copayments and de - ductibles, and qualified prescription drugs and medical devices. There is no carryover of unused FSA funds, meaning if you don’t use it, you lose it (Congressional Budget Office, 2016).

▸ Employer-Sponsored Health Insurance Employer-sponsored health insurance covers over 150 million nonelderly individuals of the U.S. population. The ACA employer responsi - bility provision requiring health insurance cov - erage for companies employing over 50 full-time employees is not seen as causing major changes in work hours or hiring in the employer mar - ket. Larger firms report they have looked ahead to the cost of providing health insurance when the ACA final provisions take place in 2020.

Smaller firms are relying on their employees finding less expensive options on the Health Insurance Marketplace (Kaiser Family Foun - dation, 2016). Employers negotiate and choose their own employee health insurance plan of - ferings; thus, there is no uniformity between plans. Plans have differing copays and deduct - ibles, for example some differing benefits such as prescription coverage. Employer-sponsored family coverage pre - miums reached $18,142 in 2016, representing a 3% rise in premiums over the 2015 average.

The average cost for single-person coverage in 2016 was $6,435, which was not statistically sig - nificant from the 2015 cost. Workers’ salaries since 2015 saw an average increase of 2.5% and reported inflation increased 1.1%. Since 2011 family coverage premiums have increased 20%, and since 2006 family premiums increased 58% (Kaiser Family Foundation, 2016).

214 Chapter 10 Private Health Insurance Market are not subject to state insurance regulation.

State insurance regulations typically require a richer set of benefits such as prenatal care and well-child care than are offered by the compa - nies that self-insure. Because these companies are not regulated they have the flexibility to change the package of benefits whenever it is financially advantageous. All health insurance plans are subject to federal laws. There are three federal laws that have significant impact on how health insur - ance is provided: 1. Employee Retirement Income Security Act of 1974 (ERISA, P.L. 93-406) 2. Health Insurance Portability and Accountability Act of 1996 (HIPAA, P.L. 104-191) 3. Patient Protection and Affordable Care Act (PPACA, P.L. 111-148) ERISA As federal law, ERISA sets minimum standards for employer-sponsored benefits. Companies that self-insure are subject to regulation under ERISA because the services are defined as an employer-sponsored benefit. This law requires health plans to provide the participants with the information regarding the plan features, participant rights to establish a grievance with an appeals process, and adequate disclosure of the plan’s financial activities. ERISA preempts state laws that relate to employee benefit plans.

Self-insured health plans are exempt from state laws under ERISA because health care is defined as an employer benefit and not insurance (U.S.

Department of Labor, n.d. a).

HIPAA This federal act is an amendment to ERISA providing protections for working Americans and their families who have preexisting med - ical conditions. The provisions in HIPAA es - tablished federal requirements for private and public employer-sponsored health plan insurers. which handles the enrollment, claims process - ing, and negotiating health provider contracts (Congressional Budget Office, 2016).

▸ Health Insurance Exchange Marketplace Individuals who cannot access health insurance through their employer can purchase individ - ual insurance plans through the Health Insur - ance Exchange Marketplace created under the ACA. This marketplace covers the self-employed, part-time workers, and those individuals unable to obtain insurance through an employer. These plans are administered by private insurance com - panies, with individuals assuming responsibil - ity for the full cost of their premium. The ACA is designed to address some of the problems in both the employer and the individual health in - surance market as a way to ensure that a greater number of individuals have the opportunity to purchase health insurance at an affordable cost (Fernandez, 2011).

▸ Laws and Regulations Impacting the Provision of Health Insurance Health insurance regulations address the benefits that must be offered, the individuals to whom the insurance is made available, and the insur - ers’ responsibilities to the plan enrollees. The U.S. federalism system makes the regulation of the health insurance market quite complicated.

In most cases, health insurance regulation is the primary responsibility of the states, as es - tablished in the 1945 McCaran-Ferguson Act.

Individual states have established standards and regulations. Fully insured plans (that is, employer-sponsored plans) are subject to state insurance requirements. Self-insured plans Laws and Regulations Impacting the Provision of Health Insurance 215 who cannot afford the cost of insurance can apply for a federal subsidy. Insurance is also available through employers. The ACA does not man - date employers to provide employees with in - surance coverage but does impose penalties on employers that have at least 50 full-time equiv - alent employees and do not provide coverage to pay a penalty (Chaikand, Fernandez, Newsom, & Peterson, 2010). In addition, eligibility for fed - eral programs, such a Medicaid and State Chil - dren’s Insurance Program (SCHIP), has been expanded under ACA.

▸ ACA and Its Impact on Employers Under the ACA, large employers will be subject to penalties—$2000 per year multiplied by the number of employees minus 30 (Kaiser Family Foundation, 2013a)—if they do not offer mini - mum and affordable health coverage. Their em - ployees will be eligible to purchase insurance through state exchanges. Employers are only re - quired to cover full-time employees; employers that currently offer a health plan to their part- time employees (working less than 30 hrs/week) may decide to drop part-time eligibility for in - surance plans. Similarly, employers that cur - rently sponsor retiree health plans may choose to terminate these plans, sending this group into the state health insurance marketplace. It is not known how many large employers will opt to pay the penalty and direct their employees to the insurance exchanges. Small employers, many of whom did not previously offer health insurance, are not subject to penalties. To encourage small business to purchase health insurance for their employees, employers with 50 to 100 employees can purchase coverage through the Small Busi - ness Health Options Program. Employers with fewer than 25 employees are eligible for a tax credit to offset the cost of insurance. All the changes under the ACA apply to new insurance plans. Some of the changes do This legislation permits individuals to continue health insurance after a loss or change of jobs.

Additional HIPAA provisions address patient privacy of identifiable medical information and electronic transmission of health information (U.S. Department of Labor, n.d. b).

ACA This healthcare reform act includes private in - surance provisions mandating new require - ments on individuals, employers, and health plans; restructures the private health insurance market; sets minimum standards for health coverage; and provides financial assistance to individuals and small businesses in certain cir - cumstances. ACA legislation supports innova - tive medical care delivery models and expands the Medicaid program (Centers for Medicare & Medicaid, n.d. a).

▸ The Health Reform Changes Impacting Private Insurers The ACA and the healthcare provisions of the Health Care and Education Reconciliation Act (HCERA) combined were signed into law by President Obama on March 23, 2010. On June 28, 2012, the U.S. Supreme Court, in the case of National Federation of Independent Business v. Sebelius , rendered a final decision to uphold the healthcare law (Supreme Court of the United States, 2012). Significant private health insurance market reforms within ACA are intended to im - prove consumer protections including oversight of premiums, access, coverage, and clearer com - munication between the insurers and the enrollee. The ACA requires all Americans to have health insurance, known as the individual mandate, or face penalties. Insurance can be obtained in sev - eral ways. Individuals can purchase insurance through state or federal exchanges. Individuals 216 Chapter 10 Private Health Insurance Market (Kaiser Family Foundation, 2017). Consumer coverage protections can be seen in BOX 10-1 . Group Plans and Individual Plans That Are Not Grandfathered Group plans and insurers are prohibited from excluding coverage for preexisting health con - ditions. They may not put lifetime limits on es - sential health benefits (EHB), which include emergency services, hospitalization, maternal and newborn care, mental health and substance abuse disorder services, preventive and wellness services, chronic disease management, and pe - diatric services, to include oral and vision care.

Plans can only charge a higher premium based on individual or family insurance, age, tobacco not impact older plans that are called grandfa - thered plans. If the private insurance plan was in existence before the ACA became law on March 23, 2010, it is a grandfathered plan. This is important because persons covered under such plans do not have the same level as pro - tection as do persons in plans organized after that date. A grandfathered plan only changes status when a major change such as reducing benefits or increasing out-of-pocket costs oc - curs. Insurance plans must inform the enroll - ees if they are grandfathered and provide them with contact information to ask questions.

Twenty-three percent of companies that of - fered employees health insurance benefits in 2016 offered at least one grandfathered health plan in 2016 and 23% of covered employees were enrolled in a grandfathered health plan BOX 10-1 Consumer Protections Under ACA All health plans must:

■ End lifetime limits on benefits. ■ End arbitrary cancellation of health coverage. ■ Cover adult children up to age 26. ■ Provide a Summary of Benefits and Coverage (SBC), a short, easy-to-understand summary of what a plan covers and costs. ■ Hold insurance companies accountable to spend your premiums on health care, not administrative costs and bonuses. Grandfathered plans DON’T have to:

■ Cover preventive care for free. ■ Guarantee your right to appeal. ■ Protect your choice of doctors and access to emergency care. ■ Be held accountable through rate review for excessive premium increases. In addition to the above, grandfathered individual health insurance plans (the kind you buy yourself, not the kind you get from an employer) don’t have to: ■ End yearly limits on coverage or cover you if you have a preexisting health condition. Data from U.S. Department of Health and Human Services (2017b). What if I have a grandfathered health insurance plan? Retrieved from https://www .healthcare.gov/what-if-i-have-a-grandfathered-health-plan/ ACA and Its Impact on Employers 217 in their healthcare choices (O’Connor, 2013). The expansion of coverage under ACA has included both healthy persons and persons who are less healthy but could not afford health care.

It also includes persons whose employers ter - minated coverage because it did not meet the minimum requirements set by the ACA and persons who had policies that did not meet the minimum benefit standards set by law. As a result, some persons experienced higher pre - mium costs. Private insurers, citing financial reasons, have been withdrawing from state Health In - surance Exchange Marketplaces, leaving some states with minimal insurer participation. Health insurance premiums on the exchanges are ex - pected to rise faster in 2017 than in previous years due to financial insurer loss and the phas - ing out of the ACA reinsurance program (Kaiser Family Foundation, 2017). The ACA reinsur - ance program worked as part of a risk reduc - tion for private insurers, transferring funds to the exchange insurance plans with higher-cost enrollees to provide incentive not to charge higher premiums. Concerns surrounding the financial sta - bility of the health exchanges and private in - surers were raised following the initiation of the Health Insurance Marketplace Exchanges.

Analysis of premiums and claims data re - ported insurer financial performance worsened in 2014 and 2015 with the opening of the ex - change marketplace (Kaiser Family Foundation, 2017; S & P Global Market Intelligence, 2017).

The analysis demonstrates improvement in fi - nancial stability in 2016 and early 2017. This additional data provides the evidence demon - strating the individual health exchange market has been stabilizing and private insurers are re - covering financially.

Private Insurers Initiatives to Transform Health Care The private insurer industry around the coun - try has been responding to ACA, becoming use, and geographic rating area (set by each state). Group and individual market plans must provide insurance to everyone who applies, and they must guarantee the ability to renew health insurance regardless of changes in health or the amount of health services that will be required (Mach, 2013).

Private Insurers and the State Health Insurance Marketplaces/ Private health insurers can also sell their insur - ance products on the state Health Insurance Exchanges, which are marketplaces where indi - viduals who are not covered by employer spon - sored plans and small businesses with fewer than 100 employees can choose affordable, compre - hensive health coverage that meets or exceeds a set of minimum benefit standards. The state exchange insurance plans must be offered at four tiers designed from the lowest premium (bronze) to the highest premium (platinum).

Government-sponsored premiums and subsid - ies will be available to make coverage affordable (Hahn, Sheingold, & Ott, 2013).

▸ Private Insurance Industry Response to ACA ACA and Its Impact on the Cost of Health Insurance Many provisions of the ACA have made health insurance coverage more affordable to individu - als, including premium and cost-sharing subsi - dies depending on income and rate restrictions on health plans for individuals and small busi - nesses. Newer innovative benefit designs were developed by health plans and are also designed to control costs. These include wellness pro - grams to encourage healthy living and finan - cial incentives to enhance patient engagement 218 Chapter 10 Private Health Insurance Market ▸ Opportunities for Nursing The evolving healthcare policy environment is a remarkable opportunity for nursing to demon - strate the quality and value of nursing. Nurse leaders, nurse practitioners, and nurse research - ers are in a unique position to demonstrate clin - ical outcomes, identify wasteful practices, and eliminate inappropriate care (Hahn, Sheingold, & Ott, 2013). Nurse executives have the opportu - nity to lead their organizations into becoming accountable care organizations (ACOs), utiliz - ing quality improvement outcomes based on evidence-based care (Cady, 2012). Researchers will find the current healthcare environment pres - ents an opportunity to validate nursing’s value to healthcare delivery by demonstrating links be - tween quality patient outcomes and care coor - dination strategies. Nursing case managers will find employment opportunities in private in - surance companies as nurse coordinators and navigators, as well as transition to care coaches assisting patients and families through the con - tinuum of care. There will also be a role for nurses to become involved with the design and imple - mentation of health information technology in their workplace as consumers and healthcare pro - viders embrace electronic technology (Paradis, Wood, & Cramer, 2009). The continued devel - opment of new care delivery models will impact and accelerate policy change to remove barriers to nursing practice and increase access to care for the underserved populations. These evolving roles are explained in more detail on TABLE 10-3. Nursing has a tradition of providing voice and leadership in the healthcare reform arena from the perspective of both the patient and the consumer (Hahn, Sheingold, & Ott, 2013).

Nurses are in the position to advocate to en - sure the inclusion of the nursing profession in new healthcare policy models for the deliv - ery of care. Our unique professional insights, evidence-based research, and individual expe - riences are key to improving both access to care and improving the quality of care. proactive and adjusting business models to move from underwriting risk to managing populations. They are changing from insur - ance carriers to consumer health solutions companies. Insurer websites are describing best practices and their goals of improving ac - cess to high-quality, affordable care. Personal - ized care providing care coordination through accountable care organizations (ACOs) and medical homes is highlighted. Insurers are also empowering consumers with online and mobile device apps to gain access to exten - sive provider networks, which demonstrates technological advances. Apps are available for physicians meant to assist doctors with mean - ingful use, workflow management, and clin - ical support (Divall, Camosso-Stefinovic, & Baker, 2013). Wellness and prevention pro - grams to include stress-reduction programs, free cholesterol screening, hypertension edu - cation and monitoring, and tobacco cessation programs are being reimbursed. Patient satis - faction is the ultimate goal.

▸ Health Insurance Legislative Changes on the Horizon Providing health insurance to all Americans has continued to be a bipartisan debate in the U.S.

Congress. Repeal of the ACA was at the forefront of Republican promises in the 2016 presidential election. Americans find themselves discussing whether health care is a personal right in the United States. Multiple Republican bills to re - peal and replace ACA (known as Obamacare ) have been presented and defeated in Congress.

It is a certainty that health insurance cover - age will change in our future, as it has always evolved in the past. Just what the new direction of health insurance coverage will look like is un - known. Nurses advocating for consumers can and will help shape the dynamics of healthcare insurance reform. Opportunities for Nursing 219 ▸ Quality Patient Care and Care Coordination Strategies The current healthcare reform environment provides the opportunity for nurses to partici - pate as leaders in care coordination promoting positive quality patient health outcomes. The ACA contains provisions that support measure - ment of effective patient care transitions, health delivery redesign with payment innovations to foster evidence-based transitional care, inte - grated models holding providers accountable across patient episodes of care, and establish - ment of public reporting and payment disin - centives for avoidable hospital readmissions TABLE 10-3 Nurse Employment Opportunities Opportunities for nurses in the private insurance industry Scope of role Nurse coordinator Responsible for interprofessional coordination of skilled nursing care. Also serves as a patient advocate, and facilitates communication between all stakeholders. Champions healthcare quality by supervising compliance with the Minimum Data Set (MDS) and Resident Assessment Instrument (RAI) requirements. a Nurse navigator Facilitates patient empowerment as a coach, tutor, and direct care provider.

Skilled in overcoming system barriers to comprehensive care with a variety of interprofessional team members. b Transitions coach Provides encouragement to patients and caregivers to become more active during the process of transitions of care. It is a model that primarily facilitates effective care transitions by working with patients and caregivers to improve the patient to provider communication and self-management skills. c Nurse informaticist Usually is registered nurse (RN) with graduate degree. Constructs, executes, and administers data systems that support healthcare quality through electronic medical records (EMR) and analysis of outcomes. Often delivers educational programs to clinicians and monitors trends. d APRN nurse entrepreneur Advanced practice nurse (APRN) responsible for development of nurse-managed clinics and new business ownership models of independent practice. e Sources : aAmerican Association of Nurse Assessment Coordination, 2011; bDesimini et al., 2011); cThe Care Transitions Program, n.d.; dNelson, 2013, eSharp & Monsivais, 2014.Data from American Association of Nurse Assessment Coordination (2011). Defining the role of nurse assessment coordinators: Beyond paperwork and reimbursement. Retrieved from: http://www.aanac.org/docs/white-papers/the-role-of-the-nurse-assessment-coordinator- (april-2011).pdf?sfvrsn=2 ; The Care Transitions Program®. Retrieved from: http://www.caretransitions.org/definitions.asp; Desimini, E., Kennedy, J., Helsley, M., Shiner, K., Denton, C., Rice, T., Stannard, B., Farrell, P., Marmerstein, P., Lewis, M. (2011). Making the case for nurse navigators: Benefits, outcomes and return on investment. Oncology Issues. September/October. 26-33; Nelson, B. (2013). Health information technology: Where do nurses fit in? Advance Healthcare Network For Nurses. Retrieved from: http://nursing.advanceweb.com/Student-and-New- Grad-Center/Career-Counseling/Health-Information-Technology-Where-Do-Nurses-Fit-In.aspx.

220 Chapter 10 Private Health Insurance Market readmission rates within 6 weeks by 57% ( Naylor et al., 1994), and a 50% reduction in readmis - sion rates within 6 months (Naylor et al., 1999). Dr. Naylor and her team of researchers partnered with Aetna Corporation and Kaiser Permanente Health Plan to translate research into practice. Throughout research and practice testing, the model has proven to provide improved quality of care at lower cost by reducing the number of hospital readmissions. The TCM was the basis for a new Medicare benefit for hospital discharge planning (University of Pennsylvania School of Nursing, 2017). The TCM model can be viewed as a neces - sary component to be embedded within the or - ganizational ethics for healthcare facilities. The integral role nurses play in all aspects of care transitions positions the nursing profession to be leaders in healthcare organizational ethics. Par - ticipation in the movement of transitional care is the opportunity for nurses to move beyond ethical moral distress and utilize their profes - sional role to articulate, advocate, and integrate transitional care into practice on behalf of their patients (Naylor & Berlinger, 2016). For decades, another dynamic nursing leader has been setting the example of expert care coordination while meeting the needs of childbearing women in the urban healthcare arena. Ruth Watson Lubic is credited with es - tablishing two certified birth centers, the Ma - ternity Center Association in New York City and the Family Health and Childbirthing Cen - ter in Washington, DC. Prenatal and labor and delivery care are provided at these centers for low-risk pregnancies. The cost savings are sig - nificant for childbearing woman, reducing the Cesarean rate in 2005 compared with the rest of the city (15% versus 28%) and significantly low - ered the rates of premature and low-birth rate infants. This resulted in $1.2 million in cost sav - ings. Such a nurse-driven innovation, if expanded to a nationwide model, could potentially save almost $13 billion for Medicaid-funded deliver - ies (Nickitas, 2011). Dr. Lubric’s legacy lives on in DC with the Family Health and Childbirth - ing Center, demonstrating a Cesarean section (Naylor & Sochalski, 2010). Master’s prepared nurses, that is, advanced practice nurses (APRNs), have been proposing and researching innova - tive transitional models of patient care that fo - cus on primary care, chronic care management, care coordination, and wellness. The Transitional Care Model (TCM) developed by Naylor and researchers at the University of Pennsylvania has been successful in demonstrating positive outcomes related to the triad of patient access to care, quality of care, and cost (University of Pennsylvania School of Nursing, 2013). Naylor, who is Robert Wood Johnson Foun - dation’s Interdisciplinary Nursing Quality Re - search Initiative Director and a professor at the University of Pennsylvania School of Nursing, designed the evidence-based research Transi - tional Care Model (TCM) to enhance the quality of life for patients and their families. The model involves care by APRNs serving as primary care coordinators to reduce hospital readmissions and promote positive health outcomes (Robert Wood Johnson Foundation, 2013). The APRN will perform an in-hospital assessment of the pa - tient and collaborate with the patient’s care team, resulting in an evidence-based discharge plan of care that is designed to meet the expectations of the patient, caregiver, and health providers.

Beginning with a visit within the first 24 hours after hospital discharge, the transitional care nurse (TCN) makes regular home visits and is available through telephone support through an average of 2 months after discharge. The TCN facilitates continuity of medical care between the hospital and primary care providers in the community. Patient and family engagement is a cornerstone of this model connecting the patient, family caregivers, and healthcare pro - viders as members of the care team (Robert Wood Johnson Foundation, 2013; University of Pennsylvania School of Nursing, 2013). Naylor reported increased patient satisfac - tion, physical functioning, and quality of life with the use of the TCM model (Naylor et al., 2009).

Improved healthcare quality outcomes at lower cost have been demonstrated in National Insti - tutes of Health (NIH) trials to include a drop in Quality Patient Care and Care Coordination Strategies 221 research and provide patient services as naviga - tors and clinical coordinators, and for advanced practice nurses to provide and bill for patient care. Future legislative change is expected to im - pact the dynamics of healthcare reform and the private insurance industry.

Discussion Questions 1. Describe the difference between employer-sponsored health insurance plans and individual health insurance plans obtained on the Health Insurance Exchange Marketplace. 2. Explain some of the consumer protection features of the ACA that all health plans must include. What are some of the ex - ceptions for the “grandfathered plans”? 3. Conduct an Internet search of the insurance marketplace for your own state. What are some of the features that you and your family will benefit from the most? 4. Describe the new nursing opportunities and roles that are evolving in the dynamic healthcare environment and the impact on patient access and quality. References Aetna. (2017). Indemnity plans . Retrieved from https://www .aetna.com/insurance-producer/health-plans-insurance /indemnity-plans.html American Association of Critical Care Nurses (AACN). (2015). AACN clinical scene investigator program generates clinical, fiscal results . Retrieved from https:// www.aacn.org/nursing-excellence/csi-academy/csi-news /aacn-clinical-scene-investigator-program-generates -clinical-fiscal-results American Association of Nurse Assessment Coordination (AANAC). (2011). Defining the role of nurse assessment coordinators: Beyond paperwork and reimbursement . Retrieved from http://www.aanac.org/docs/white -papers/the-role-of-the-nurse-assessment-coordinator -(april-2011).pdf?sfvrsn =2 Blue Cross Blue Shield. (2017). The history of the Blue Cross Blue Shield System. Retrieved from http://www.bcbs .com/about-the-association/ Cady, R. F. (2012). Healthcare reform after the Supreme Court ruling: Implications for nurse executives. J O N A’ s Healthcare, Law, Ethics, and Regulation, 14 (3), 81–84. rate of 18%, which is significantly below the national average of 32%, and a 5% premature infant rate, below the national average of 11%, in 2015 (Community of Hope, 2017).

Reimbursement Tied to Patient Outcomes Healthcare reimbursement currently is tied directly to patient outcomes. Nurses have taken the lead in many organizations to identify and improve patient care outcomes, thereby increasing reim - bursement rates for their healthcare institutions.

The American Association of Critical-Care Nurses (AACN) reported that critical care nurse–led in- novations at 42 hospitals nationwide not only significantly improved the patient clinical out - comes, but demonstrated financial savings that totaled more than $28 million annually (AACN, 2015). The AACN developed and implemented a 16-month leadership academy for critical-care nurses that resulted in the positive patient clin - ical outcomes. This initiative demonstrates the value in empowering and investing in leadership training for the bedside nurse to improve qual - ity patient outcomes, which has direct financial gains for the healthcare institution.

▸ Conclusion Private insurers continue to hold the largest insur - ance market share with over 150 million Amer - icans participating in private health plans. For most Americans healthcare insurance remains a benefit from their employers. Key federal legis - lation has shaped the healthcare industry; the most recent healthcare reform legislation known as the Affordable Care Act (ACA) is changing the way private insurers conduct business. Con - sumer empowerment and legislative reforms are instrumental in changing private insurer busi - ness models from underwriting risk to man - aging populations. The ACA is providing new opportunities for nurses to demonstrate quality outcomes through evidence-based practice and 222 Chapter 10 Private Health Insurance Market /infographic/employer-responsibility-under-the-affordable -care-act/ Kaiser Family Foundation (2013b) Percent of private sector establishments that offer health insurance to employees . Retrieved from http://kff.org/other/state-indicator/percent -of-firms-offering-coverage/ Kaiser Family Foundation (2016). 2016 employer health benefits survey: Health plan administration. Health Research & Educational Trust (HRET). Retrieved from http://kff .org/private-insurance/report/20132016-employer-health -benefits/ Kaiser Family Foundation (2017). Individual insurance market performance in early 2017. Retrieved from http:// www.kff.org/health-reform/issue-brief/individual -insurance-market-performance-in-early-2017/ Kaiser Permanente. (2013). About us: Our history . Retrieved from http://share.kaiserpermanente.org/article/history -of-kaiser-permanente/ Mach, A. L (2013, April 23). Overview of private health insurance provisions in the Patient Protection and Affordable Care Act (ACA) . Congressional Research Service Report. Retrieved from https://fas.org/sgp/crs /misc/R43048.pdf Massachusetts Association of Health Plans (MAHP) (n.d.). Blue Cross and Blue Shield: A historical compilation . Retrieved from http://www.mahp.org/issues/BCBS%20mutualization /Blue%20Cross%20History%20Compilation.pdf Monitini, L. (2012, October 9). A tale of two keynotes: Futurist Joe Flower and Aetna’s Mark Bertoli . [Blog post]. Retrieved from http://thehealthcareblog.com /blog/2012/10/09/a-tale-of-two-keynotes-futurist -joe-flower-and-aetna%E2%80%99s-mark-bertoli/ National Federation of Independent Business v. Sebelius , 557 U.S. 519 (2012). Naylor, M. D., & Berlinger, N. (2016). Transitional care: A priority for health care organizational ethics. The Hastings Center Report, 46 (S1), 39–42. Naylor, M. D., Brooten, D., Campbell, R., Jacobsen, B., Mezey, M., Pauly, M., & Schwartz. J. S. (1999). Comprehensive discharge planning and home follow-up of hospitalized elders: A randomized clinical trial. Journal of the American Medical Association , 28(7), 613–620. Naylor, M. D., Brooten, D., Jones, R., Lavizzo-Mourey, R., Mezey, M., & Pauly, M. (1994). Comprehensive discharge planning for the hospitalized elderly: A randomized clinical trial. Annals of Internal Medicine , 120 (12), 999–1006. Naylor, M. D., Feldman, P. H., Keating, S., Koen, M. J., Kurtzman, E. T., Maccoy, M. C., & Krakauer, R. (2009). Translating research into practice: Transitional care for older adults. Journal of Evaluation in Clinical Practice 15(16), 1164–1170. Naylor, M. D., & Sochalski, J. A. (2010, November 4). Scaling up: Bringing the transitional care model into the mainstream. The Commonwealth Fund . Retrieved from http://www.commonwealthfund.org/Publications/Issue -Briefs/2010/Nov/Scaling-Up-Transitional-Care.aspx Centers for Medicare & Medicaid Services (n.d. a). Glossary: Affordable Care Act . Retrieved from https://www .healthcare.gov/glossary/affordable-care-act/ Centers for Medicare & Medicaid Services (n.d. b). Health insurance plan & network types: HMOs, PPOs, and more . 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Making the case for nurse navigators: Benefits, outcomes, and return on investment. Oncology Issues , 26–33. Divall, P., Camosso-Stefinovic, J., & Baker, R. (2013). The use of personal digital assistants in clinical decision making by health care professionals: A systematic review. Health Informatics Journal, 19 (1), 16–28. Retrieved from http:// journals.sagepub.com/doi/10.1177/1460458212446761 Economic History Association. (2017). Health insurance in the United States . Retrieved from https://eh.net/encyclopedia /health-insurance-in-the-united-states Fernandez, B. (2011). Health insurance: A primer. Congressional Research Service. Report RI.32237. Retrieved from http:// www.fas.org/sgp/crs/misc/R43048.pdf Hahn, J. A., Sheingold, B. H., & Ott, K. M. (2013). Demystifying state health insurance marketplaces. Nursing Economics, 31(3), 119–127. HealthInsurance.org (2018). What is a health maintenance organization? 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Retrieved from http://www.nursing.upenn .edu/media/transitional care/Pages/default.aspx U.S. Bureau of Labor Statistics. (2002). Definitions of health insurance terms. National Compensation Survey. Retrieved from http://www.bls.gov/ncs/ebs/sp/healthterms.pdf U.S. Bureau of Labor Statistics (2010). Consumer-driven health care: What is it, and what does it mean for employees and employers? Retrieved from https://www .bls.gov/opub/mlr/cwc/consumer-driven-health-care -what-is-it-and-what-does-it-mean-for-employees-and -employers.pdf U.S. Department of Health and Human Services. (n.d. a). Glossary: Flexible spending accounts . Retrieved from https://www .healthcare.gov/glossary/flexible-spending-account-FSA/ U.S. Department of Health and Human Services. (n.d. b). What if I have a grandfathered health insurance plan? Retrieved from https://www.healthcare.gov /what-if-i-have-a-grandfathered-health-plan/ U.S. Department of Labor. (2013a). Health plans and benefits: Employment Retirement Income Security Act. Retrieved from http://www.dol.gov/dol/topic/health-plans/erisa .htm#doltopics U.S. Department of Labor. (2013b). Health plans and benefits: Health Insurance Portability and Accountability Act. Retrieved from http://www.dol.gov/dol/topic/health -plans/portability.htm U.S. Department of Labor. (2015, April). The National Compensation Survey and the Affordable Care Act in health care data. Monthly Labor Review . Retrieved from https://www.bls.gov/opub/mlr/2015/article/the -national-compensation-survey-and-the-affordable -care-act-preserving-quality-health-care-data.htm U.S. Department of the Treasury. (2013). Resource pages: Health savings accounts (HSAs). Retrieved from http:// www.treasury.gov/resource-center/faqs/Taxes/Pages /Health-Savings-Accounts.aspx White House. (2013). A more secure future: What the new health care law means for you and your family. White House blog: Barack Obama. Retrieved from http://www .whitehouse.gov/healthreform/healthcare-overview Zhou, K. (2009). The history of medical insurance in the United States. Yale Journal of Medicine and Law, 6(1), 38–39. Nelson, B. (2013). Health information technology: Where do nurses fit in? Advance Healthcare Network For Nurses . Retrieved from http://nursing.advanceweb.com/Student -and-New-Grad-Center/Career-Counseling/Health -Information-Technology-Where-Do-Nurses-Fit-In.aspx Nickitas, D. M. (2011). Nurses. In D. M. Nickitas, D. J. Middaugh, & N. Aries (Eds.) Policy and politics . Sudbury, MA: Jones & Bartlett Learning; p. 93. O’Connor, J. T. (2013). Comprehensive assessment of ACA factors that will affect individual market premiums in 2014. Milliman Report. Retrieved from http://www .ahip.org/MillimanReportACA04252013/ Paradis, M., Wood, J., & Cramer, M. (2009). A policy analysis of health care reform: Implications for nurses. Nursing Economics, 27 (5), 281–287. Robert Wood Johnson Foundation (2013). The transitional care model. The future of nursing. Retrieved from http:// www.nursing.upenn.edu/media/transitionalcare/Pages /default.apx Sharp, D. B., & Monsivais, D. (2014). Decreasing barriers for nurse practitioner social entrepreneurship. Journal of the American Association of Nurse Practitioners, 26(10), 562–566. S & P Global Market Intelligence. (2017). The U.S. ACA individual market showed progress in 2016, but still needs time to mature. Retrieved from https://www .globalcreditportal.com/ratingsdirect/renderArticle .do?articleId =1828594&SctArtId =421970&from =CM&nsl _code =LIME&sourceObjectId =10047007&sourceRevId =5&fee_ind =N&exp_date =20270408-00:16:31 Sultz, H. A., & Young, K. M. (2014). Health care USA: Understanding its organization and delivery. 8th ed. Frederick, MD: Aspen Publishers. The Care Transitions Program. (n.d.). What is a transitions coach? Retrieved from https://caretransitions.org /what-is-a-transitions-coach/ The Commonwealth Fund. (2016a). 2017 premium changes and insurer participation in the Affordable Care Act’s health insurance marketplace s. Retrieved from http:// www.kff.org/health-reform/issue-brief/2017-premium -changes-and-insurer-participation-in-the-affordable -care-acts-health-insurance-marketplaces/ The Commonwealth Fund (2016b). New Commonwealth Fund survey: Most ACA enrollees who have used their plans are getting health care they previously would have gone without; wait times for doctor appointments similar to other insured Americans . Retrieved from http://www.commonwealthfund.org/publications/press -releases/2016/may/aca-tracking-survey-access?omnicid =rsscmnw&utm_source =feedblitz&utm_medium =FeedBlitzRss&utm_campaign =thecommonwealthfund 224 Chapter 10 Private Health Insurance Market always (Buppert, 2012, 2017). The Balanced Budget Act of 1997 affords NPs provider status with direct reimbursement for services provided to Medicare beneficiaries at 85% of the annual physician rate schedule. Medicaid also directly reimburses NPs for serviced provided to its beneficiaries, but reimbursement is uneven due to jurisdictional-level regulatory oversight for Medicaid programs (Kaiser Family Foundation, 2012). However, given the private nature of commercial insurance, it remains the commercial payer’s prerogative to establish their own policies so long as they meet regulatory requirements. Lack of scope-of-practice parity and variation in local insurance regulations complicate business-planning efforts by creating an uneven market (Buppert, 2012, 2017; Watson, 2015). Without universal FPA, commercial payers may justify uneven policies, denying provider credentialing at will (Buppert, 1998). When the reimbursement rate is reduced or denied unless NP claims are submitted under a physician’s name, potential customer base and revenue generation are both compromised (Buppert, 2017; Chilton, 2002; Watson, 2015). It is imperative to know the insurance regulations and scope of practice barriers to commercial insurance credentialing so that when contracts are negotiated, the NP is equipped with the necessary information to disabuse any false assertions from the payer regarding the NP role and its legal entitlements (Buppert, 2012, 2017).

Lesson 2: Know the Fullness of Provider Status Available to the NP Confounding the unevenness of NP reimbursement amongst commercial payers is the lack of NP representation on commercial payer advisory boards and credentialing panels (Chilton, 2002). The lack of parity in NP scope of practice and reimbursement furthers the tradition of physician-controlled credentialing amongst commercial payers (Buppert, 2017). NPs are also unevenly recognized as primary care providers across commercial payers, leaving NPs as higher cost out-of-network or specialist providers (Buppert, 2012; Chilton, 2002; Watson, 2015). CareFirst (2013), a Blue Cross Blue Shield subsidiary, seems to have pioneered the NP primary care providers as recognized leaders of CASE STUDY This case study highlights an APRN nurse entrepreneur’s journey to establish an independent nurse practitioner practice inclusive of commercial (private) insurance company reimbursement. The lessons learned are explained to provide future APRN independent practitioners the opportunity to benefit from the experiences presented.

Commercial Insurance Credentialing for the Enterprising Nurse Practitioner: Lessons Learned Dr. Wesley Cook, President, District Primary Care, LLC In 22 states and the District of Columbia (DC), nurse practitioners (NPs) enjoy full practice authority (FPA). A leader in the FPA movement, DC provides a tremendous opportunity for enterprising NPs.

Enchanted by DC’s confidence in NPs, I formed District Primary Care (DPC) as a limited liability company in the summer of 2016. An aging population, a trend away from hospital-centered care for the chronically ill, and heightened public demand for in-home care provided the perfect niche for my talents and preferences (Iglehart, 2013; Sharp & Monsivais, 2014; Sharp, 1999).

Because DPC provides primary care services to geriatric patients who are facility- or homebound and are in the poorer sections of town, the business model would have been unsuccessful without accepting reimbursement from both public and commercial insurance products.

Medicare and Medicaid are both publicly and commercially administered, depending on the plan type. This case study shares the lessons I learned along the way.

Lesson 1: Contract Negotiation Requires Keen Awareness of Key Jurisdictional Barriers Commercial payers have often followed the Centers for Medicare & Medicaid Services’ (CMS) lead when establishing policies for reimbursement and determination of medical necessity, but not Case Study 225 CASE STUDIES supervise the process. Securing legal counsel is also invaluable in negotiation as attorneys are well versed in argumentation and negotiation strategies that are not typically part of the core NP curriculum. The public payers are straightforward, and I was able to easily provide management for Medicare and Medicaid credentialing. Additionally, after leaning on the firm to report progress more frequently and specifically, modifying directives per such reporting, CareFirst, Humana, and Aetna contracts were finalized. United HealthCare stated that they were closed to all individual providers, even though DPC was established as a practice entity. Cigna would not empanel nurse practitioners, explaining all claims must be tied to a physician. Always have legal counsel approve contractual language in prior to signing. This ensures that areas that should be negotiated have not been ignored. Payers do not always understand NPs as more than physician-extenders or mid-level providers. Presenting the business case inclusive of quality data will often do more to assist with commercial payer credentialing than any impassioned case made without these key data.

Lesson 4: Seeing Patients Prior to Contract Acceptance May Prove Detrimental Overly trusting the credentialing firm also proved detrimental to reimbursement itself. They did not request retroactive dating for claims generated prior to contract finalization. They maintained that it could not be negotiated after the contract.

Everything is negotiable; to accept the contracting party’s assertion otherwise is to accept a lose–win contract. While the start dates for retroactive claims with public payers and some commercial payers were successfully appealed, DPC suffered a financial loss of approximately $10,000 in unpaid claims generated on inactive dates. Hold off on directly reimbursable patient care until the credentialing process is complete, unless written agreement to pay from a date prior to the contract start is procured. Given the impoverished situation of many of DPC’s patients, the unreimbursed claims were written off as bad debt; attempting collection from those who believed they were being seen by an in-network provider seemed practically impossible and morally unsound. their patient-centered medical homes. Some commercial payers remain firm in not allowing NPs to be primary care providers. Practice ownership is demanding of time and mental energy, but it is imperative that NP-practice owners continue to work with commercial payers, gaining access to advisory boards and credentialing panels to heighten the profile of the NP in the physician-saturated environment (Buppert, 2017; Chilton, 2002). Procuring the extent of provider status afforded in writing will also help the NP-entrepreneur to create a business and marketing plan around those services for which reimbursement has been contractually guaranteed.

Lesson 3: Delegated Contract Negotiation Requires the Active Participation of the NP Owner A credentialing firm was enlisted to assist with the cumbersome task of credentialing. This firm was entrusted with contract negotiation but not signatory privileges. The firm promised clear communication and transparent processes. They advised that many times, applications can take up to 6 months to be approved by public and commercial payers alike. It slowly became clear that I had entrusted the management of a process to those who were not managing the process after 3 months of poor communication with many payers. Reports were difficult to read; excuses were myriad. The Medicaid application had been lost entirely, having not been monitored by the project manager. This placed significant delays on key revenue. Even worse, the credentialing contractor had not taken seriously any effort to negotiate on my behalf or involve me as impasses were met. Commercial payer credentialing has been streamlined substantially by CAQH ProView, a central, secure, online repository of standard credentialing information from which commercial payers draw requisite information. However, not all payers use the central repository, and some who do still require a separate application. Thus, this part of the process remains cumbersome but administrative, justifying delegation. However, the president of any given company retains ultimate responsibility for the oversight of business operations, even those administrative tasks delegated to those believed competent, so it is imperative for the NP-practice owner to 226 Chapter 10 Private Health Insurance Market CASE STUDIES payer credentialing, and I am enriched daily by both business and clinical aspects of my practice. Owning a practice is serious business, and it is all too easy to become enamored with the freedom of charting one’s own course to the detriment of business interests. Credentialing is a cumbersome process, commercial-payer credentialing, all the more. But, if the NP is to compete in the marketplace, pursuing and procuring commercial-payer provider status is essential. Without the ability to directly bill, NP entrepreneurs lose business opportunities because beneficiaries will choose lower cost, in-network providers. As NPs gain and maintain full practice authority across the country, commercial-payer provider status remains a significant barrier to scope-of-practice parity even in areas where full practice authority is enjoyed. Cumbersome as it may be, NPs are wise to pursue commercial-payer provider status in any practice setting, pairing with attorneys and professional organizations where necessary to resolve issues of obstruction (see BOX 10-2 ). Lesson 5: Maintain Business Viability with a Systemized Approach to Credentialing Maintenance There are additional layers for remaining credentialed with commercial payers. Each has its own timeline for recredentialing, different requirements for peer review, quality assurance, and prior authorization. A systemized approach is required for both the requisite tasks of maintaining good standing and pushing the policy envelope. When claims are denied because they have not been coded with a requisite modifier or the diagnosis codes do not match the evaluation and management codes, a system needs to be established so the NP does not lose income-producing time untangling often-confusing claim denials. DPC now has a practice manager and a biller who deftly manage this process. While DPC remains a fledgling business, it is viable and growing. The work of caring provides rewards worth the frustrating labyrinth of BOX 10-2 Practice Pearls for Nurse Practitioners Seeking Provider Status with Commercial Payers Lesson 1: Contract Negotiation Requires Keen Awareness of Key Jurisdictional Barriers ■ Hire an attorney to guide you through the process of understanding your rights as an NP business owner, payer contract negotiating, and credentialing firm hiring. ■ Set aside a copy of your local insurance regulations so that you may use them to appeal rejections, if applicable. Lesson 2: Know the Fullness of Provider Status Available to the NP ■ Reach out to your local nurse practitioner professional organization for any credentialing resources or contacts they may have. ■ Keep records of which payers allow PCP status, as well as any procedural prohibitions for NPs; if you are allowed per your jurisdictional scope of practice, challenge the policy in writing with the assistance of an attorney. Lesson 3: Delegated Contract Negotiation Requires the Active Participation of the NP Owner ■ Consult a business guide* tailored for NPs, as you:

• Hire an attorney.

• Focus inquiries to and determine priorities for your attorney, who is likely paid by the hour. (continues) Case Study 227 CASE STUDIES Buppert, C. (2017). Nurse practitioner’s business practice and legal guide (6th ed.). Burlington, MA: Jones & Bartlett Learning. CareFirst. (2013). Blue Cross Blue Shield’s patient-centered medical home program: An overview . Retrieved from https://member.carefirst.com/carefirst-resources/pdf /pcmh-program-overview.pdf Chilton, L. (2002). Breaking down insurance barriers: The Mississippi nurse practitioner network. Advance for Nurse Practitioners, 10 (9), 45–46. Grossman, S., & O’Brien, M. B. (2010). How to run your nurse practitioner business: A guide for success . New York, NY: Springer Publishing Company. Iglehart, J. K. (2013). Expanding the role of advanced nurse practitioners—risks and rewards. New England Journal of Medicine, 368 (20), 1935. Kaiser Family Foundation. (2012). Medicaid benefits: Nurse practitioner services. Retrieved from http://www.kff .org/medicaid/state-indicator/nurse-practitioner-services Case Study Questions 1. Identify key barriers for NPs credentialing with commercial payers. 2. Discuss the role of legal counsel in negotiating and appealing commercial-payer contracts. 3. Describe the value of NP quality and efficacy data in commercial insurance negotiations and appeals. References Balanced Budget Act of 1997, Pub. L. No. 105-33, § 4511, 111 Stat. 442-113 (1997). Buppert, C. (1998). Reimbursement for nurse practitioner services. The Nurse Practitioner, 23 (1), 60–64, 67. Buppert, C. (2012). Most payers now reimburse NPs, but the details differ. Journal for Nurse Practitioners, 8 (9), 743–745. * Suggested business guides: Buppert’s Nurse Practitioner Business Practice and Legal Guide or Grossman & O’Brien’s How to Run Your Nurse Practitioner Business: A Guide for Success. • Map out your credentialing plan.

• Hire and evaluate a credentialing firm, if not self-credentialing.

• Learn key knowledge for the NP entrepreneur: NP reimbursement overview. NP practice ownership considerations. Appeal provider-status rejection with the assistance of your attorney. Rejection is not a final ruling if you have not appealed at least once . . . or thrice. Lesson 4: Seeing Patients Prior to Contract Acceptance May Prove Detrimental ■ Expect credentialing to take 3 to 6 months. Accept it. The speed of the insurance company’s credentialing staff is a rate-limiting aspect of the process you have no control over. ■ Know the policy for retroactively submitting claims prior to the contractual start date. Do not see patients with that insurance until you are officially credentialed unless you have in writing that claims will be paid retroactive to the date of the contract; you will not be paid. Lesson 5: Maintain Business Viability with a Systemized Approach to Credentialing Maintenance ■ Keep record of who the decision makers are, how often they meet, when any closed panels are expected to open, and any written policies you procure during the process. Place this in the file with your contract so that you may be equipped to gain a better contract during recredentialing, if possible. BOX 10-2 Practice Pearls for Nurse Practitioners Seeking Provider Status with Commercial Payers (continued) 228 Chapter 10 Private Health Insurance Market CASE STUDIES Watson, M. (2015). Basic principles to consider when opening a nurse practitioner-owned practice in Texas. Journal of the American Association of Nurse Practitioners, 27 (12), 683–689. doi:10.1002/2327-6924.12274 /?currentTimeframe 50&sortModel 5%7B%22colId %22:%22Location%22,%22sort%22:%22asc%22%7D Sharp, D. B., & Monsivais, D. (2014). Decreasing barriers for nurse practitioner social entrepreneurship. Journal of the American Association of Nurse Practitioners, 26 (10), 562–566. doi:10.1002/2327-6924.12126 Sharp, N. (1999). NP ownership of home care, long-term care, assisted living, and community care. The Nurse Practitioner, 24(12), 51–59. doi:10.1097/00006205-199912000-00005 Case Study 229 CASE STUDIES © Anthony Krikorian/Shutterstock Medicare: Protector to Innovator Brigitte S. Cypress OBJECTIVES ■ Understand the evolution of the passage of Medicare, including its timelines and milestones. ■ Summarize the current Medicare structure, including who is eligible, its four components, and the changes with the implementation of the Affordable Care Act. ■ Have an overview of Medicare spending and its effect on future Medicare projections. ■ Analyze and understand how we pay for Medicare and its effect on consumers and providers. ■ Discuss the Medicare’s Quality Improvement Organizations (QIOs) and their role in improving health quality of Medicare beneficiaries. ■ Describe the Medicare Access and Children’s Health Insurance Program Reauthorization Act (MACRA) of 2015 and its current and future impact to clinicians and providers. ■ Provide a future outlook of Medicare and discuss strategies how to move forward for better patient, family, provider, and healthcare outcomes. OVERVIEW Medicare is America’s second largest entitlement program, behind Social Security, signed into law by President Lyndon Johnson in 1965. The program provides healthcare insurance for the retired and disabled population, including younger adults with permanent infirmities. Medicare faces many issues and challenges today—and in the years to come—despite the creation of the Affordable Care Act (ACA) of 2010. The uncertainty of the current political climate, coupled with the controversies of the ACA, will continue to create debate and tensions among policymakers in the United States Congress, healthcare providers, consumers, and beyond. The situation heightens the need for serious consideration of reform now and in the future. 231 CHAPTER 11 ▸ Introduction For the last 10 years, Americans have witnessed the intense and tumultuous debate over the fu - ture of their healthcare system. The passage of the Patient Protection and Affordable Care Act of 2010 (ACA) ushered in a new era in health law and policy. The Affordable Care Act guarantees access to health care for more than 30 million people, creates new incentives to change clin - ical practice to foster better coordination and quality, and changes the payment system to re - ward value. It also gives more information to physicians to make them better clinicians and make patients more value-conscious consum - ers. After multiple legal challenges and Con - gressional efforts that ultimately failed to repeal the law, the ACA was established by the end of the Obama administration. The law has since been vulnerable related to its length and com - plexity, and divisive and heated debates have led to massive confusion about its impact. There is also the continuous pressures of the “repeal and replace” chorus of angry and misinformed vot - ers. The ACA is not only historic and transfor - mational, but profoundly troubling for some and controversial for many (Manchikanti, Caraway, Parr, Fellows, & Hirsch, 2011). With the new po - litical climate and the 2016 election of President Donald Trump, dynamic uncertainty again per - vades the national debate. The unpredictability that the national de - bate surrounding American health care pro - duces will certainly affect policy, legislation, and, consequently, patient and family outcomes.

Healthcare providers must adequately address current issues such as their inability to push or - ganizations and entities into adopting more ef - ficient practices. Other important aspects like improvement in coverage and affordability and incentives toward reducing financial excess and waste should be addressed. Eliminating gaps in delivery of high-ranking services should also be a high priority. Medicare is moving quickly to bring about effective changes on reimburse - ment and finances, as it faces increasing finan - cial spending and swelling enrollment. In fiscal year 2017, the Office of the Actu - ary of the Centers for Medicare & Medicaid Ser - vices (CMS) has estimated that gross current law spending on Medicare benefits will total $709.4 billion. Medicare will provide health insurance to 58 million individuals who are age 65 or older, disabled, or have end-stage renal disease (ESRD) (U.S. Department of Health and Human Services [USDHHS], 2017b). Much of the recent growth in spending over the past two decades among Medicare beneficiaries is attributable to rising spending on chronic conditions, specifically, diabetes, hypertension, kidney disease, mental disorders, and arthritis. Spending has also in - creased in outpatient care and for prescription drug therapy, but less for inpatient care (Thorpe, Ogden, & Galactionova, 2010). The $709.4 bil - lion Medicare benefits spending for 2017 is item - ized as follows: (a) Part A: $202.1 billion gross fee-for-service spending; (b) Part B: $192.9 billion gross fee-for-service spending; (c) Part C: $204.7 billion gross spending; and (d) Part D:

$109.7 billion gross spending (U.S. Department of Health and Human Services, 2017b). Medi - care Part A pays for inpatient hospital, skilled nursing facility, home health related to a hospital stay, and hospice care. Medicare Part B pays for physician, outpatient hospital, end-stage renal disease, laboratory, durable medical equipment, certain home health, and other medical services.

Medicare Part C, the Medicare Advantage pro - gram, pays plans a capitated monthly payment to provide all Part A and B services, and Part D services, if offered by the plan. Medicare Part D offers a standard prescription drug benefit. Reducing and slowing the rise in health spending is among the nation’s top health policy priorities. On April 16, 2015, President Obama signed the Medicare Access and CHIP Reau - thorization Act of 2015 (MACRA) into law. The Congressional Budget Office (CBO) projects the total Medicare spending to increase from $708 billion to $1.4 trillion from 2017-2027. Net Medi - care spending is projected to grow modestly as a share of the federal budget and the nation’s economy over the next 10 years (Congressional Budget Office, 2017). 232 Chapter 11 Medicare: Protector to Innovator The rate of growth of Medicare spending over the long term is predicted to exceed the rate of growth in federal revenues and the over - all economy. Thus, much political attention has focused on improving Medicare as imperative for restraining spending increases (Thorpe, Ogden, & Galactionova, 2010). Medicare must find new ap - proaches to help restrain the growth in health - care costs. But how can the government program provide health insurance for most of the people age 65 or older at a time when their healthcare needs tend to explode? This is particularly true for “baby boomers” who continue to enter their retirement years with more complex, chronic health problems and comorbidities than previ - ous generations. When the last of the iconic gen - eration reaches age 65 in less than 8 years, more than 80 million people will be eligible for Medi - care coverage. The demands on Medicare increase at a time when the ratio of people paying into the program versus those receiving benefits is at an all-time low and getting worse. How can Medi - care improve coverage and reimbursement with - out limiting access to beneficial services for a great number of people? The increase in the number of people eligible for benefits paired with the rising costs of health care and longer lifespans threaten the program’s sustainability. It could force the cur - rent presidential administration and the United States Congress to come up with a plan to reduce costs, either by cutting benefits, raising taxes, or some other policies that change the basic prom - ise made to aging Americans. This raises a seri - ous question: Should the worry be for the current situation or for the long term?

▸ Evolution of the Passage of Medicare:

Timeline and Milestones Prior to the 1960s (between 1901 and 1909), President Theodore Roosevelt advocated for the passage of social insurance. He believed that a strong country required healthy people. He also favored the passage of health insurance legis - lation that would come from the states, rather than the federal government, and cover only the working classes. President Roosevelt had an unsuccessful run for another term in 1912. By 1935, Congress passed the Social Security Act of 1935 during the first of President Frank - lin Roosevelt’s four terms. This epochal piece of legislation contained old-age insurance, un - employment compensation, and maternal and child health, but not health insurance. The U.S. Surgeon General Thomas Parran proposed in 1937 that national health insurance first cover Social Security beneficiaries. By 1939, the Fed - eral Security Agency was created to administer federal organizations dealing with health, edu - cation, and social insurance, including the So - cial Security Board, Public Health Service, and Office of Education. After the Social Security Board called for beneficiary health insurance, President Harry Truman publicly lent his support to national health insurance in 1945 (Centers for Medicare & Medicaid Services, 2017e). In 1965, President Lyndon Johnson said that Medicare would protect Americans by not allowing illness to drain their savings so they might enjoy dignity in their later years. During this time, only about half of older Americans had any health insurance and only about one in four older Americans had protection against the high cost of hospitalization (Centers for Medicare & Medicaid Services, 2017d, 2017g ). Medicare and Medicaid were enacted as Title XVIII and Title XIX of the Social Security Act, providing hos - pitalization, post-hospital extended care, and home health coverage to almost all Americans age 65 or older (Centers for Medicare & Med - icaid Services, 2017b, 2017d ). To implement the Health Insurance for the Aged (Medicare) Act, the Social Security Administration (SSA) was re - organized and the Bureau of Health Insurance was established on July 30, 1965. This bureau was responsible for the development of health insurance policy. The creation of Medicare in 1965 ensured the dignity of Americans as they reached old age at that time, just as President Evolution of the Passage of Medicare: Timeline and Milestones 233 Johnson promised. This was a truly memora - ble accomplishment for many millions of se - niors and people with a disability who have since then counted on the program. On July 1, 1966, Medicare was implemented and more than 19  million individuals enrolled (Centers for Medicare & Medicaid Services, 2017e). In the early 1970s, Medicare eligibility was extended to individuals under age 65 with long-term disabilities and to individuals with end-stage renal disease (ESRD). Medicare was given additional authority to conduct demon - stration programs by 1972. Also in 1972, law - makers extended coverage to people receiving Social Security Disability Insurance payments for 2 years and people with ESRD. For benefi - ciaries whose primary or secondary diagno - sis is amyotrophic lateral sclerosis (ALS), the 2-year waiting period was waived. The Health Maintenance Organization (HMO) Act pro - vided start-up grants and loans for the develop - ment of HMOs in 1973. HMOs meeting federal standards relating to comprehensive benefits and quality were established and under cer - tain circumstances had the right to require an employer to offer coverage to employees. The Medicare statute was also amended to provide for HMOs to contract to provide Medicare ben - efits to beneficiaries who choose to enroll. By 1977, the Health Care Financing Administra - tion (HCFA) was established to administer the Medicare and Medicaid programs (Centers for Medicare & Medicaid Services, 2017e). The 1980s ushered in the broadened cover - age of Medicare home health services. Medicare supplemental insurance, also called “Medigap,” was brought under federal oversight. The Tax Equity and Fiscal Responsibility Act of 1982 made it easier and more attractive for health maintenance organizations to contract with the Medicare program providing for Medicare pay - ments on a full-risk basis. In addition, the Act expanded the Agency’s quality oversight efforts through peer review organizations (PROs). An acute care hospital inpatient prospective payment system (IPPS) for the Medicare program, based on patients’ diagnoses, was adopted to replace cost-based payments in 1983. Under the IPPS, each case is categorized into a diagnosis-related group (DRG). Each DRG has a payment weight assigned to it, based on the average resources used to treat Medicare patients in that DRG. The Medicare hospice benefit was established as an option for beneficiaries to receive all-inclusive care to relieve pain and manage symptoms in a home setting rather than an institutional set - ting. Further, in 1986, the Emergency Medical Treatment and Labor Act (EMTALA) required hospitals participating in Medicare that offer emergency services to provide appropriate med - ical screenings and stabilizing treatments. The Medicare Catastrophic Coverage Act of 1988 was enacted, which included the most signifi - cant changes since enactment of the Medicare program, improved hospital and skilled nurs - ing facility benefits, covered mammography, and included an outpatient prescription drug benefit and a cap on patient liability. By 1989, the Medicare drug benefit and other enhance - ments of Medicare coverage in the Medicare Catastrophic Coverage Act of 1988 were re - pealed after higher-income seniors protested new premiums. A new Medicare fee schedule for physician and other professional services, a resource-based relative value scale, replaced charge-based payments (Centers for Medicare & Medicaid Services, 2017e). Additional federal standards for Medicare supplemental insurance were enacted by 1990.

The Health Insurance Portability and Account - ability Act of 1996 (HIPAA) was passed in 1996.

It created the Medicare Integrity Program, which dedicated funding to program integrity activ - ities and allowed HCFA to competitively con - tract for program integrity work. By 1997, The Balanced Budget Act of 1997 (BBA) made changes to Medicare including: (a) establishing an array of new Medicare man - aged care and other private health plan choices for beneficiaries, offered through a coordi - nated open enrollment process; (b) expanding education and information to help beneficia - ries make informed choices about their health care; (c) requiring the Health Care Financing 234 Chapter 11 Medicare: Protector to Innovator Administration (HCFA) to develop and imple - ment five new prospective payment systems for Medicare services (for inpatient rehabilitation hospital or unit services, skilled nursing facility services, home health services, hospital outpa - tient department services, and outpatient reha - bilitation services); (d) slowing the rate of growth in Medicare spending and extending the life of the trust fund for 10 years; (e) providing a broad range of beneficiary protections; (f ) expanding preventive benefits; and (g) testing other innova - tive approaches to payment and service delivery through research and demonstrations (Centers for Medicare & Medicaid Services, 2017e). In 1988, Medicare.gov was launched to provide updated information about Medicare. The first annual Medicare & You handbook was mailed to all Medicare beneficiary households in 1999.

The Ticket to Work and Work Incentives Im - provements Act of 1999 (TWWIIA) expanded the availability of Medicare and Medicaid for cer - tain disabled beneficiaries who return to work.

The Balanced Budget Refinement Act of 1999 (BBRA) increased payments for some Medicare providers and increased the amount of Medicaid disproportionate share hospital (DSH) funds available to hospitals in certain states and the District of Columbia (Centers for Medicare & Medicaid Services, 2017e). The herald of the new millennium further increased Medicare payments to providers and managed healthcare organizations, reduced cer - tain Medicare beneficiary copayments, and im - proved Medicare coverage of preventive services through the Benefits Improvement and Protec - tion Act (BIPA) of 2000. U.S. Secretary of Health and Human Services Tommy Thompson re - named the HCFA the Centers for Medicare & Medicaid Services (CMS) in 2001 (Centers for Medicare & Medicaid Services, 2017e). By 2003, the Medicare Prescription Drug, Improvement, and Modernization Act (MMA) created a new optional outpatient prescription drug bene - fit, effective in 2006. Medicare consists of two separate but coordinated trust funds: hospital insurance (HI, or Part A) and supplementary medical insurance (SMI). The SMI trust fund comprises two separate accounts: Part B account and the Part D account. Almost all persons who are age 65 and over or disabled and who are en - titled to HI are eligible to enroll in Part B and Part D on a voluntary basis by paying monthly premiums (Boards of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds, 2015). For the period prior to 2006, MMA created a tempo - rary prescription discount card program. Ben - eficiaries with incomes less than 150% of the federal poverty level (FPL) became eligible for subsidies under the new Part D prescription drug program. MMA also required beneficia - ries with higher incomes to pay a greater share of the Part B premium beginning in 2007. En - rollment started for Medicare prescription drug coverage by 2005. Medicare prescription drug coverage (Part D) began Medicare for 39 million beneficiaries. Numerous MMA provisions were implemented, including several new preventive services for Medicare beneficiaries, the year after in 2006 (Centers for Medicare & Medic - aid Services, 2017e). The Patient Protection and Affordable Care Act (ACA) was signed into law by Pres - ident Barack Obama on March 23, 2010. For the first time, health insurance companies were prohibited from denying or charging more for coverage based on an individual’s health status.

This allowed for the expansion of the Medicaid program and subsidies for insurance purchased through state-based marketplaces to ensure that private insurance is affordable. The ACA also provided a variety of other insurance reforms, such as new preventive benefit requirements and prohibitions on dollar limits, and expanded Medicare drug and preventive services benefits.

Also in 2010, people exposed to environmental health hazards within areas under a correspond - ing emergency declaration became Medicare eli - gible (Manchikanti, Caraway, Parr, Fellows, & Hirsch, 2011). By 2011, 3.6 million people with Medicare saved $2.1 billion on their prescrip - tion drugs. More than 25.7 million beneficiaries in original Medicare received at least one pre - ventive service following a cost-sharing waiver Evolution of the Passage of Medicare: Timeline and Milestones 235 in the Affordable Care Act. Further in 2013, an estimated 37.2  million Medicare beneficiaries received at least one free preventive service, in - cluding an estimated 26.5 million people with original Medicare. The Medicare Access and Children’s Health Insurance Program (CHIP) Reauthorization Act (MACRA) of 2015 changed the way Medicare pays physicians. It replaced the Sustainable Growth Rate (SGR) method - ology with a method that is more predictable and speeds up participation in alternative pay - ment models. These models encourage quality and efficiency. MACRA also extended CHIP for 2 years, through fiscal year 2017 (Centers for Medicare & Medicaid Services, 2017e).

▸ Current Medicare Structure Medicare celebrated its golden anniversary in 2015. The program now provides insurance cov - erage for almost 58 million Americans, accounts for 20% of the nation’s healthcare spending, and 4% of the GDP (Rettenmaier & Saving, 2016; Thorpe, Ogden, & Galactionova, 2010). Eligi - ble Medicare beneficiaries include individuals age 65 and over who are eligible for Social Se - curity payments, those under 65 with a disabil - ity who receive Social Security cash payments, and people of all ages with ESRD. A summary of the general Medicare enrollment from 2015 to 2017 is presented in TABLE 11-1. The distri - bution of the number of people receiving Medi - care (Parts A–D) is shown in TABLE 11-2. As of 2015, the average benefit per enrollee total was $12,559 divided into: Part A: $4,978; Part B:

$5,441, and Part D: $2,141 (Centers for Medi - care & Medicaid Services, 2017a).

The Four Components of Medicare Basic Medicare consists of Parts A and B and an optional Part D. This is also known as “original Medicare.” Part A is basically hospital insurance after a pre-occurrence deductible is met ($1,288 in 2016) for a hospital stay of 1 to 60 days, and $161 daily co-insurance for days 21 to 100 in a skilled nursing facility (SNF) (U.S. Depart - ment of Health and Human Services, 2017e).

This helps to cover 80% of inpatient care as well as skilled nursing facilities, hospice, and home healthcare services. If a person or spouse of 10 years or more has been working 40 quarters (10 years of full-time job), he or she has been already paying into Medicare Part A. If he or she is turning age 65 and currently working and wants to wait to take Social Security (SS) bene - fit, enrollment in Medicare Part A is needed. If the person is receiving SS benefit already, enroll - ment to Medicare Parts A and B is automatic.

The premium for Part B is deducted from the * Persons in millions; numbers may not add up due to rounding.Source: Reproduced from Centers for Medicare & Medicaid Services Office of the Actuary. (2016). HHS FY 2017 budget in brief . Retrieved from https://www.hhs.gov/about/budget/fy2017/budget-in-brief/cms/medicare/index.html#parts TABLE 11-1 General Medicare Enrollment* (Years 2015–2017) Category 2015 2016 2017 2017 +/– 2016 Age 65 and over 46.0 47.7 49.3 +1.7 Disabled 9.0 9.0 9.0 +0.0 Total Beneficiaries 55.0 56.7 58.4 +1.7 236 Chapter 11 Medicare: Protector to Innovator SS benefit check each month. This deduction is $121.80 per month (as of 2016) or more de - pending on your income (U.S. Department of Health and Human Services, 2017e; Schaef - fer & Schaeffer, 2015). If one is turning age 65, working, and covered under the employer’s group health plan, nothing should be done un - less told by the employer to enroll in Medicare Parts A and B. If unsure, the person can also switch from employer coverage to a Medicare Ad- vantage (Part C) or Medigap plan (Schaeffer & Schaeffer, 2015). Medicare Part B is simply medical insurance. It generally covers 80% of the cost of services af - ter an annual deductible of $166 (as of 2016). The standard monthly Part B premium is $121.80 as of 2016. However, approximately 70% of benefi - ciaries were held harmless from increases to the Part B premium in 2016 compared to 2015, be - cause the SS cost of living adjustment for 2016 is 0%. Therefore, these beneficiaries will continue to pay the 2015 premium amount of $104.90.

The Bipartisan Budget Act prevented an even higher premium from going into effect for the 30% of beneficiaries who are not held harmless.

Some beneficiaries pay a higher Part B premium based on their income: Those with annual in - comes above $85,000 (single) or $170,000 (mar - ried) pay from $170.50 to $389.80 per month as of 2016 (U.S. Department of Health and Human Services, 2017e). Part B aids with the cost of phy - sician visits, end-stage renal disease, laboratory, durable medical equipment, certain home health, and other medical services (ambulatory surgery services, some preventative care like immuniza - tions, blood works, X-rays, and some diagnostic * Parts A –D in millions; totals may not add up due to rounding. No data available for year 2016. Source: Reproduced from National Committee to Preserve Social Security & Medicare. (2017). Fast facts about Medicare. Retrieved from http://www.ncpssm .org/Medicare/MedicareFastFacts TABLE 11-2 Distribution of Number of People Receiving Medicare in 2015* Total Medicare Beneficiaries 55.3 Aged 46.3 Disabled 9.0 Part A (Hospital Insurance, HI) Beneficiaries 54.9 Aged 46.0 Disabled 9.0 Part B (Supplementary Medical Insurance, SMI) Beneficiaries 50.7 Aged 42.5 Disabled 8.2 Part C (Medicare Advantage) Beneficiaries 17.5 Part D (Prescription Drug Benefit) Beneficiaries 41.8 Current Medicare Structure 237 screenings) that do not require a hospital stay.

Part B coverage is voluntary, and about 91% of all Medicare beneficiaries are enrolled in Part B (U.S. Department of Health and Human Ser - vices, 2017e). It does not cover any care outside of the United States or cost of help with daily ac - tivities like bathing, eating, getting dressed, or any care of eyes, teeth, or hearing. A summary of the number of persons served and payments by type of service for Medicare Part A and B is presented in TABLE 11-3 b e l o w. If one has no group benefits as an employee or retiree, there are two options: (1) supplement the Medicare benefits with a federally stan - dardized Medigap plan, or (2) replace the Medicare benefits with a Medicare Advantage Plan (Part C). Medicare Part C plans pay a cap - itated monthly payment to provide all Part A and B services, and Part D services if offered by the plan. Plans can offer additional benefits or alternative cost-sharing arrangements that are at least as generous as the standard Parts A and B benefits under traditional Medicare. In addi - tion to the regular Part B premium, beneficia - ries who choose to participate in Part C may pay monthly plan premiums that vary based on the services offered by the plan and the efficiency of the plan (U.S. Department of Health and Hu - man Services, 2017e). Part D is prescription coverage. It offers a standard prescription drug benefit with a 2016 deductible of $360 and an average estimated monthly premium of $41 (U.S. Department of Health and Human Services, 2017e). Some plans do not have a deductible at all (Schaeffer & Schaeffer, 2015). After the initial coverage of TABLE 11-3 Medicare Part A and B Persons Served and Payments by Type of Service (2015) Original Medicare Persons Served in Millions Program Payments in Billions Part A 7.7 $181.9 Inpatient hospital 6.6 $130.0 Skilled nursing facility 1.8 $29.1 Home health agency 1.7 $6.9 Hospice 1.4 $15.9 Part B 33.8 $178.0 Physician/durable medical equipment 33.3 $102.0 Outpatient 25.5 $64,4 Home health agency 2.0 $11.3 Total (Parts A and B) 34.4 $359.9 Source: Reproduced from Centers for Medicare & Medicaid Services. (2017). CMS Fast Facts . Retrieved from https://www.cms.gov/Research-Statistics-Data-and -Systems/Statistics-Trends-and-Reports/CMS-Fast-Facts/index.html 238 Chapter 11 Medicare: Protector to Innovator $2,960, there is a coverage gap until the benefi - ciary and the Part D provider have spent $4,700 (U.S. Department of Health and Human Ser - vices, 2017e). The gap is known as the “donut hole.” Low-income beneficiaries are responsible for varying degrees of cost sharing, with copay - ments ranging from $0 to $7.40 in 2016 and low or no monthly premiums. The Affordable Care Act makes Medicare prescription drug coverage more affordable by gradually closing the gap in coverage where beneficiaries had to pay the full cost of their prescriptions out of pocket before catastrophic coverage for prescriptions took ef - fect. The “donut hole” will be closed by 2020.

The number of beneficiaries enrolled in Medi - care Part D is expected to increase by about 4% to 44.5 million this year, including about 12.7 million beneficiaries who receive the low-income subsidy.

In 2016, approximately 58% of those with Part D coverage are enrolled in a standalone Part D pre - scription drug plan, 38% in a Medicare Advan - tage prescription drug plan, and the rest in an employer plan or the Limited Income Newly El - igible Transition (NET) Plan. Overall, approxi - mately 88% of all Medicare beneficiaries receive prescription drug coverage through Medicare Part D, employer-sponsored retiree health plans, or other creditable coverage (U.S. Department of Health and Human Services, 2017e). A sum - mary of Medicare deductibles, coinsurance, and premiums for the years 2016 and 2017 is shown in TABLE 11-4 b e l o w. Affordable Care Act and Medicare The Affordable Care Act closes the Medicare Part D coverage gap, or “donut hole,” through a combination of manufacturer discounts and gradually increasing federal subsidies (U.S.

Department of Health and Human Services (2015b, c). When beneficiaries exceed an ini - tial coverage limit of their total drug spending ($3,310 in 2016) until they reach the threshold for qualified out-of-pocket spending ($4,850 in 2016), they are generally responsible for the 5% gap of their drug costs. Prior to the Afford - able Care Act, beneficiaries were responsible for 100% of their drug costs in the coverage gap. Un - der the ACA, in 2017, non–low-income subsidy beneficiaries who reach the coverage gap will pay 40% of the cost of covered Part D brand drugs and biologics and 51% of the costs for all generic drugs in the coverage gap. In 2015, more than 5.1  million beneficiaries reached the coverage gap and saved more than $5.4 billion on their medications due to the prescription drug dis - count program. These savings averaged about $1,054 per person (U.S. Department of Health and Human Services, 2017e). It is argued that the ACA represents the most significant trans - formation of the American healthcare system since Medicare and Medicaid, but a realistic vision of the future of federal Medicare expen - ditures will require significant increases in tax - ation and the estimates themselves are subject to significant uncertainty. As the Chief Actuary of CMS, Paul Spitalnic stated at the end of the 2015 Medicare Trustees Report: The ACA has been successful in re - ducing many Medicare expenditures to date. Although early indications from some of the alternative payment model demonstrations have been encouraging, there is a strong possibility that certain payment changes will not be viable in the long range. Specifically, the annual price updates for most categories of non-physician health services will be adjusted downward each year by the growth in economy-wide productivity.

Sustaining these price reductions will be challenging for health care pro - viders, as the best available evidence indicates that most providers cannot improve their productivity to this degree for a prolonged period given the labor-intensive nature of these services. Absent an unprecedented change in health care delivery systems and payment mechanisms, the prices paid by Medicare for most health ser - vices will fall increasingly short of the cost of providing such services. If this Current Medicare Structure 239 issue is not addressed by subsequent legislation, it is likely that access to, and quality of, physicians’ services would deteriorate over time for beneficiaries.

Overriding the price updates specified in current law, as lawmakers repeatedly did in the case of physician payment rates under the SGR formula, would lead to substantially higher costs for Medicare in the long range than those projected in this report (pp. 258–259).

Aligned with expenditures and financing, what is Medicare spending like and how is it TABLE 11-4 Medicare Deductibles, Coinsurance, Premiums (Years 2016–2017) Medicare Components Calendar Year 2016 Calendar Year 2017 Part A Inpatient Hospital Deductible $1,288.00 $1,316.00 Coinsurance/day $322.00 $329.00 Coinsurance/LTR day $644.00 $658.00 Coinsurance/SNF day $161.00 $164.50 Part B Deductible $166.00 $183.00 Part D Maximum deductible $360.00 $400.00 Initial coverage limit $3,310.00 $3,700.00 Out-of-pocket threshold $4,850.00 $4,950.00 Premiums Part A $411.00 $413.00 Part B $104.90–$389.80 $134.00–$428.60 LTR = lifetime reserve; SNF = skilled nursing facility. * Source: Reproduced from Centers for Medicaid & Medicare Services. (2017). CMS Fast Facts . Retrieved from https://www.cms.gov/Research-Statistics-Data -and-Systems/Statistics-Trends-and-Reports/CMS-Fast-Facts/index.html 240 Chapter 11 Medicare: Protector to Innovator financed? It is important to have an overview of Medicare spending and to understand how the program is currently financed.

▸ Overview of Medicare Spending From the Centers for Medicare & Medicaid Ser - vices (CMS) Office of the Actuary, the 2016 an - nual report of the Boards of Medicare Trustees and the 2016 Medicare baseline and projections, and most recent historical and spending data from the Congressional Budget Office (CBO), Medicare ac - counted for 15% of the federal budget. Medicare plays a major role in the healthcare system, ac - counting for 20% of total national health spend - ing in 2014, 29% of retail sales of prescription drugs, 26% of hospital care, and 23% of physician services (Cubanski & Neuman, 2016). Medicare benefit payments totaled $632 billion in 2015: 23% for hospital inpatient services, 12% for the Part D drug benefit, 11% for physician services, and 27% for Medicare Advantage private health plans covering all Part A and Part B benefits. Medicare spending grew 4.5% to $646.2 billion in 2015, or 20% of total national health expenditures (NHE) (Centers for Medicare & Medicaid Services, 2017f ).

As of 2016, 31% of Medicare beneficiaries are en - rolled in Medicare Advantage plans (Cubanski & Neuman, 2016). Slower growth in Medicare spending in recent years can be attributed in part to pol - icy changes that took effect as part of the ACA and the Budget Control Act of 2011 (BCA).

The Budget Control Act of 2011 lowered Medi - care spending through sequestration that re - duced payments to providers and plans by 2% beginning in 2013. The ACA included reduc - tions in Medicare payments to plans and pro - viders and introduced delivery system reforms that aimed to improve efficiency and quality of patient care and reduce costs, including ac - countable care organizations (ACOs), medical homes, bundled payments, and value-based pur - chasing initiatives. The average annual growth in total Medicare spending was 4.4% between 2010 and 2015, down from 9% between 2000 and 2010, despite faster growth in enrollment since 2011 with the “baby boom” generation reaching Medicare eligibility age. The average annual growth in spending per beneficiary av - eraged just 1.4% between 2010 and 2015, down from 7.4% between 2000 and 2010 (Cubanski & Neuman, 2016). Despite the slower growth in spending over the recent years, Medicare dis - bursement is expected to continue to grow more slowly in the future, and there are signs that it could increase at a faster rate due to rising pre - scription drug expense, growing enrollment in Medicare, increases in provider payments, and higher growth in input prices for medical care (Cubanski & Neuman, 2016). The Boards of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds in their 2015 annual report further stated: Projections of Medicare costs are highly uncertain, especially when looking out more than several decades. One reason for uncertainty is that scientific advances will make possible new inter - ventions, procedures, and therapies.

Some conditions that are untreatable today will be handled routinely in the future. Spurred by economic incentives, the institutions through which care is delivered will evolve, possibly becom - ing more efficient. While most health care technological advances to date have tended to increase expenditures, the health care landscape is shifting. No one knows whether future developments will, on balance, increase or decrease costs (p. 2). ▸ How We Pay for Medicare Medicare’s expenditures are currently paid through a combination of payroll taxes (37%), taxes on Social Security benefits, federal general How We Pay for Medicare 241 revenues (42%), premium payments from retir - ees (13%), state transfers, and a few other sources (Rettenmaier & Saving, 2016).

Medicare’s Hospital Insurance Revenue Sources Medicare Part A is financed primarily through a 2.9% tax on earnings paid by employers and employees (1.45% each) (accounting for 88% of Part A revenue). Higher-income taxpayers (more than $200,000/individual and $250,000/ couple) pay a higher payroll tax on earnings (2.35%). Part A is also funded by federal income taxes on Social Security benefits. In 2015, pay - roll taxes will pay for 87% of Part A’s $276 billion in spending. Federal income taxes on Social Se - curity Benefits will pay for 8% and general rev - enues and premiums from voluntary enrollees make up the remainder (Cubanski & Neuman, 2016; Rettenmaier & Saving, 2016).

Medicare’s Supplementary Medical Insurance Revenue Sources Medicare supplementary medical insurance (SMI) includes Parts B and D. Part B is financed through general revenues (73%), beneficiary pre - miums (25%), and interest and other sources (2%). Beneficiaries with annual incomes over $85,000/individual or $170,000/couple pay a higher, income-related Part B premium re - flecting a larger share of total Part B spending, ranging from 35% to 80%. The ACA froze the income thresholds through 2019, and beginning in 2020, the income thresholds will once again be indexed to inflation, based on their levels in 2019 (a provision in the Medicare Access and CHIP Reauthorization Act of 2015 [MACRA]).

As a result, the number and share of benefici - aries paying income-related premiums will in - crease as the number of people on Medicare continues to grow in future years and as their incomes rise. Part D is financed by general revenues (77%), beneficiary premiums (14%), and state payments for dually eligible beneficiaries (10%). As for Part B, higher-income enrollees pay a larger share of the cost of Part D cover - age (Cubanski & Neuman, 2016; Rettenmaier & Saving, 2016). The Medicare Advantage program (Part C) is not separately financed. Medicare Advantage plans such as HMOs and preferred provider or - ganizations (PPOs) cover all Part A, Part B, and (typically) Part D benefits. Beneficiaries enrolled in Medicare Advantage typically pay monthly premiums for additional benefits covered by their plan, in addition to the Part B premium (Cubanski & Neuman, 2016).

▸ Medicare Quality Improvement Organizations The Quality Improvement Organizations (QIOs) Program is one of the largest federal programs dedicated to improving health qual - ity for Medicare beneficiaries. It is an integral part of the U.S. Department of Health and Hu - man Services (USDHHS)’ National Quality Strategy for providing better care and better health at lower cost. QIOs, an important re - source in CMS, are required under Sections 1152 to 1154 of the Social Security Act. CMS is required to provide a report to the U.S. Con - gress every fiscal year that outlines the admin - istration, cost, and impact of the QIO Program.

Throughout its history, the program has been instrumental in advancing national efforts to motivate providers in improving and meas - uring quality for better outcomes. By law, the mission of the QIO Program is to improve the effectiveness, efficiency, economy, and quality of services delivered to Medicare beneficiaries.

Based on this statutory charge, CMS identi - fies the core functions of the QIO Program as: (a) improving quality of care for beneficiaries, (b) protecting the integrity of the Medicare Trust 242 Chapter 11 Medicare: Protector to Innovator Fund by ensuring that Medicare pays only for services and goods that are reasonable and nec - essary and that are provided in the most appro - priate setting, and (c) protecting beneficiaries by expeditiously addressing individual complaints, such as beneficiary complaints, provider-based notice appeals, violations of the EMTALA, and other related responsibilities as articulated in QIO-related law. A QIO is composed of a group of health quality experts, clinicians, and con - sumers organized to improve the quality of care delivered to people with Medicare. There are two types of QIOs that work under the direc - tion of CMS: Beneficiary and Family Centered Care (BFCC-QIOs) and the Quality Innovation Network (QIN-QIOs) (Center for Medicare & Medicaid Services, 2017h; U.S. Department of Health and Human Services, 2017d). The current QIOs’ 5-year contract cycle, or 11th Statement of Work, began on August 1, 2014, and provides approximately $580 million in fiscal year 2017 and $4.1 billion over 5 years.

In the 11th Statement of Work, there are 14 Quality Innovation Network (QIN) contracts and 5 Beneficiary and Family Centered Care (BFCC) contracts. BFCC-QIOs is the program’s statutory case review work that manages all beneficiary complaints and quality of care re - views, concerns related to early discharge from healthcare settings, and patient and family en - gagement to ensure consistency in the review process while taking into consideration local factors important to beneficiaries and their families. They also handle cases in which ben - eficiaries want to appeal a healthcare provider’s decision to discharge them from the hospital or discontinue other types of services. Two desig - nated BFCC-QIOs serve all 50 states and three territories, which are grouped into five regions.

Since August 2014, nearly 200,000 case reviews have been conducted. Effective January 2016, Beneficiary and Family Centered Care Contract QIOs assumed the initial reviews of short-stay hospital claims under a probe and educate pro - cess (Center for Medicare & Medicaid Services, 2017h; U.S. Department of Health and Human Services, 2017 d). Quality Innovation Network (QIN) contrac - tors have been working to reduce the occurrence of central-line bloodstream infections, hospital readmissions, and adverse drug events. The QIO Program’s 14 QIN (QIN-QIOs) bring Medicare beneficiaries, providers, and communities to - gether in data-driven initiatives that increase patient safety, make communities healthier, bet - ter coordinate post-hospital care, and improve clinical quality. By serving regions of two to six states each, QIN-QIOs can help best practices for better care spread more quickly, while still accommodating local conditions and cultural factors (Center for Medicare & Medicaid Ser - vices, 2017h; U.S. Department of Health and Human Services, 2017d).

▸ The Future Outlook:

The Way Forward It is established that projection of Medicare costs is highly uncertain, although it has been on a slower upward trajectory now than in past decades. This raises several questions about re - cent spending growth and future projections:

Can the recent slowdown in Medicare spend - ing be sustained and can this be done without adversely affecting access to or quality of care?

How are payment and delivery system reforms influencing spending levels? How will future spending be affected by Medicare’s new ap - proaches to physician payment that will be es - tablished pursuant to the 2015 law known as MACRA? What steps could be taken to mod - erate the projected growth in Medicare spend - ing due to the availability of new specialty drugs and medical technology? (Cubanski & Neuman, 2016). Given the magnitude of the fiscal chal - lenges ahead, Medicare needs new approaches to help it move to a more solid financial foot - ing. The USDHHS presented a set of propos - als moving forward with Medicare that are the answers to these questions. The President’s Fiscal Year 2017 Budget in - cludes a package of Medicare legislative proposals The Future Outlook: The Way Forward 243 that will save a net $419.4 billion over 10 years.

The USDHHS emphasized that this can be done by supporting delivery system reform to promote high-quality, efficient care, improving beneficiary access to care, addressing the rising cost of pharmaceuticals, more closely aligning payments with costs of care, and making struc - tural changes that will reduce federal subsidies to high-income beneficiaries and create incen - tives for same to seek high-value services. These strategies are divided into six separate headings, namely, payment incentives, care delivery, infor - mation, addressing the rising cost of pharma - ceuticals, increasing the availability of generic drugs and biologics, and Medicare structural re - forms. They are presented in BOXES 11-1 through 11-6 below. These proposals, combined with tax proposals included in the President’s Fiscal Year 2017 Budget, would help extend the life of the Medicare Hospital Insurance Trust Fund by over 15 years (U.S. Department of Health and Hu - man Services, 2017a ). There are other changes to Medicare that have been proposed that could help to address the healthcare spending challenges posed by the aging of the population, including restructuring Medicare benefits and cost sharing, eliminating “first-dollar” Medigap coverage, further increas - ing Medicare premiums for beneficiaries with relatively high incomes, raising the Medicare el - igibility age, shifting Medicare from a defined benefit structure to a “premium support” sys - tem, and accelerating the ACA’s delivery system reforms (Cubanski & Neuman, 2016). MACRA provides a unique opportunity to transform healthcare delivery from a volume-based Medicare payment system to one focused on high-quality care at a reasonable cost. The law revoked the Sustainable Growth Rate Formula that calculated payment cuts for physicians. It also created a new framework for rewarding phy - sicians for providing higher quality care by es - tablishing two tracks for payment: merit-based incentive payment system (MIPS), and advanced alternative payment models (AAPMs). The Qual - ity Payment Program (QPP) is the umbrella term used to describe the MIPS and AAPM tracks under MACRA. It consolidates three existing quality reporting programs: Physician Quality Reporting System (PQRS),  Value-Based Pay - ment Modifier (VBPM), and  meaningful use (MU), plus it adds a new performance category, called improvement activities (IA), into a single system through MIPS. It also notably required that Social Security numbers be removed from BOX 11-1 USDHHS Payment Incentives Proposal 2017 Payment Incentives Reform Medicare Advantage Payments to Improve the Efficiency and Sustainability of the Program.

Implement Bundled Payment for Post-Acute Care.

Expand Basis for Beneficiary Assignment for Accountable Care Organizations to include Nurse Practitioners, Physician Assistants, and Clinical Nurse Specialists.

Allow CMS to Assign Beneficiaries to Federally Qualified Health Centers and Rural Health Clinics Participating in the Medicare Shared Savings Program.

Allow Accountable Care Organizations to Pay Beneficiaries for Primary Care Visits up to the Applicable Medicare Cost-Sharing Amount.

Establish a Bonus Payment for Hospitals Cooperating with Certain Alternative Payment Models.

Establish a Hospital-Wide Readmissions Reduction Measure.

Establish Quality Bonus Payments for High- Performing Part D Plans.

Extend Accountability for Hospital-Acquired Conditions.

Implement Value-Based Purchasing for Additional Providers.

Source: Data from U.S. Department of Health and Human Services. (2017). HHS FY 2017 Budget in Brief - CMS – Medicare: 2017 legislative proposals . Retrieved from https://www.hhs.gov/about /budget/fy2017/budget-in-brief/cms/medicare/index.html#parts 244 Chapter 11 Medicare: Protector to Innovator Medicare identification cards (Center for Medi - care & Medicaid, 2017c; U.S. Department of Health and Human Services, 2017c). MACRA supports the USDHHS goal to re - ward clinicians for value over volume through MIPS and providing bonus payments for partic - ipation in eligible alternative payment models. MIPS will combine several current quality pro - grams for physicians and healthcare profession - als into one comprehensive program starting in 2019. Under MIPS, positive and negative payment adjustments will be made under the Medicare physician fee schedule based on qual - ity performance, resource use, use of electronic health records, and participation in clinical prac - tice improvement activities. These adjustments will be capped at 4% in 2019, 5% in 2020, 7% in 2021, and 9% in 2022 and future years. Be - tween 2019 and 2024, Medicare physicians and healthcare professionals can also receive an BOX 11-2 USDHHS Care Delivery Proposals 2017 Care Delivery Expand the Ability of Medicare Advantage Organizations to Pay for Services Delivered via Telehealth.

Allow the Secretary to Introduce Primary Care Payments under the Physician Fee Schedule in a Budget Neutral Manner.

Source: Data from U.S. Department of Health and Human Services. (2017). HHS FY 2017 Budget in Brief - CMS – Medicare: 2017 legislative proposals . Retrieved from https://www.hhs.gov /about/budget/fy2017/budget-in-brief/cms/medicare/index .html#parts BOX 11-3 USDHHS Information Proposals 2017 Information Add Certain Behavioral Health Providers to the Electronic Health Record Incentive Programs.

Increase Value in Medicare Provider Payments.

Eliminate the 190-Day Lifetime Limit on Inpatient Psychiatric Facility Services.

Update Medicare Disproportionate Share Formula for Hospitals in Puerto Rico.

Adjust Payment Updates for Certain Post- Acute Care Providers.

Source: Data from U.S. Department of Health and Human Services. (2017). HHS FY 2017 Budget in Brief - CMS – Medicare: 2017 legislative proposals . Retrieved from https://www.hhs.gov /about/budget/fy2017/budget-in-brief/cms/medicare/index .html#parts BOX 11-4 USDHHS Proposals to Address the Rising Costs of Pharmaceuticals 2017 Address the Rising Costs of Pharmaceuticals Align Medicare Drug Payment Policies with Medicaid Policies for Low-Income Beneficiaries.

Accelerate Manufacturer Drug Discounts to Provide Relief to Medicare Beneficiaries in the Coverage Gap.

Modify Reimbursement of Part B Drugs.

Require Mandatory Reporting of Other Prescription Drug Coverage.

Allow the Secretary to Negotiate Prices for Biologics and High-Cost Prescription Drugs.

Change the Part D Coverage Gap Discount Program Agreements from Annually to Quarterly.

Establish Authority for a Program to Prevent Prescription Drug Abuse in Medicare Part D.

Increase Part D Plan Sponsors’ Risk for Catastrophic Drugs.

Require Evidence Development for Coverage of High Cost Drugs.

Source: Data from U.S. Department of Health and Human Services. (2017). HHS FY 2017 Budget in Brief - CMS – Medicare: 2017 legislative proposals . Retrieved from https://www.hhs.gov /about/budget/fy2017/budget-in-brief/cms/medicare/index .html#parts The Future Outlook: The Way Forward 245 additional positive adjustment for exceptional performance ( Centers for Medicare & Medic - aid, 2017c; U.S. Department of Health and Hu - man Services, 2017c). MACRA is a significant piece of healthcare legislation that is expected to have a profound effect on the way U.S. health care is reimbursed.

However, surveys show that few physicians are familiar with the legislation and the im - pact it will have on their practice especially at a time of unprecedented change, intense pricing pressure, and ever more complicated reporting requirements. Why does MACRA matter? For physicians and healthcare professionals who qualify to receive a separate incentive payment for participating in an eligible alternative pay - ment model, MACRA provides a 5% lump sum payment each year from fiscal years 2019 to 2024. To be a “qualifying alternative payment model participant,” a physician or healthcare professional must receive a certain amount of their payments through an entity (such as an ac - countable care organization [ACO]) that partic - ipates in an eligible alternative payment model (U.S. Department of Health and Human Ser - vices, 2017c). For clinicians who receive reim - bursement under Medicare Part B, MACRA will tie an increasing amount of that payment to quality and value as defined by their Qual - ity Reporting Program (QPP). The program is cost neutral. By 2022, there will be a 18% differ - ential in payment made to the top performers versus the lowest performers. Medicare intends to publish the data so that it can be used by Physician Compare and other third parties to drive patient choice. These data are also likely to drive private payers as they define networks and enter into contract negotiations. Physi - cian Compare is a CMS website designed to help consumers make informed choices about the health care they receive through Medicare.

MIPS payment adjustments will follow provid - ers for 2 years if they switch practices. Practices may think twice if a clinician is a low MIPS per - former and it may affect their mobility. Provid - ers who fail to engage with MACRA and MIPS BOX 11-5 USDHHS Proposals to Increase the Availability of Generic Drugs and Biologics 2017 Increase the Availability of Generic Drugs and Biologics Prohibit Brand and Generic Drug Manufacturers from Delaying the Availability of New Generic Drugs and Biologics.

Modify Length of Exclusivity to Facilitate Faster Development of Generic Biologics.

Establish Transparency and Reporting Requirements in Pharmaceutical Drug Pricing.

Source: Data from U.S. Department of Health and Human Services. (2017). HHS FY 2017 Budget in Brief - CMS – Medicare: 2017 legislative proposals . Retrieved from https://www.hhs.gov /about/budget/fy2017/budget-in-brief/cms/medicare/index .html#parts BOX 11-6 USDHHS Proposals for Medicare Structural Reforms 2017 Medicare Structural Reforms Eliminate Beneficiary Coinsurance for Screening Colonoscopies with Polyp Removal.

Increase Income-Related Premiums under Medicare Parts B and D.

Encourage the Use of Generic Drugs by Low- Income Beneficiaries.

Modify the Part B Deductible for New Beneficiaries.

Introduce Home Health Copayments for New Beneficiaries.

Source: Data from U.S. Department of Health and Human Services. (2017). HHS FY 2017 Budget in Brief - CMS – Medicare: 2017 legislative proposals . Retrieved from https://www.hhs.gov /about/budget/fy2017/budget-in-brief/cms/medicare/index .html#parts 246 Chapter 11 Medicare: Protector to Innovator will be setting themselves up for significant reductions in Medicare payments. Furthermore, as data from the program are made publicly available, there is a risk that it could drive future patient volumes away from low performers. The same data will be used to define networks and set prices, and for private payers to implement similar quality reporting programs (Center for Medicare & Medicaid Services, 2017c; U.S. De - partment of Health and Human Services, 2017c).

▸ Conclusion Medicare is a valuable source of health insurance for seniors age 65 and older, as well as younger adults with permanent disabilities.  Despite its many benefits and quality improvement pro - grams, Medicare faces many issues and chal - lenges today and in the years to come. Today, Medicare excess healthcare cost growth and demographics are driving the rise in healthcare spending by the increasing number of the elder population. For decades, per-capita healthcare spending has grown more rapidly than the na - tion’s per-capita gross domestic product. Other critical challenges include how to finance care for future generations without unduly burdening beneficiaries, taxpayers, or the general economy; concerns about the current payment system for private plans; the current structure of prescrip - tion drug spending; and how to make health and long-term care more affordable for benefici - aries in light of rising health costs. It is imper - ative that we change the extent that a growing Medicare spending and cost burden is taxpayer financed. Indeed, most reforms either passed or suggested should also have the goal of improving the health and healthcare experiences and de - creasing the costs of all Americans. We can aim higher by supporting the partnerships that are essential today in getting better health care. Like the prevention-oriented health care today, Medi - care and Medicaid programs cannot be effective without partnership. New approaches to better care to keep Medicare and Medicaid sustainable and to keep it financially secure should also be upheld, given the uncertainty and controversy of the Affordable Care Act in the current pol - itical climate. The need is urgent to bring U.S.

healthcare costs into a sustainable range for both public and private payers. The demands Medi - care places on the rest of the federal budget will force the U.S. Congress to consider some diffi - cult choices as to who should bear the burden of elder healthcare spending. It amplifies the need for serious consideration of reform.

Discussion Questions 1. Trace the evolution of the passage of Medicare, its timelines, and milestones. 2. Describe the current Medicare structure, including who is eligible, its four com - ponents, and the changes with the im - plementation of the Affordable Care Act. 3. Discuss Medicare spending as it is now and its effect on future Medicare projections. 4. How do we pay for Medicare and what are the effects on consumers and providers? 5. What are Medicare’s Quality Improvement Organizations (QIOs) and their role in improving health quality of Medicare beneficiaries? 6. What is the Medicare Access and Children’s Health Insurance Program Reauthorization Act (MACRA) of 2015 and its current and future impact to clinicians and providers? 7. How do you envision Medicare in the future and how should we move forward for better patient, family, provider, and healthcare outcomes? References Boards of Trustees, Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds. (2015). 2015 annual report of the Boards of Trustees of the Federal Health Insurance and Federal Supplementary Medical Insurance Trust Funds. Retrieved from https:// www.cms.gov/Research-Statistics-Data-and-Systems /Statistics-Trends-and-Reports/ReportsTrustFunds /Downloads/TR2015.pdf 247 References Centers for Medicare & Medicaid Services (CMS). (2017a). CMS fast facts. Retrieved from https://www.cms.gov /Research-Statistics-Data-and-Systems/Statistics-Trends -and-Reports/CMS-Fast-Facts/index.html Centers for Medicare & Medicaid Services (CMS). (2017b). CMS program statistics. Retrieved from https://www.cms.gov /Research-Statistics-Data-and-Systems/Statistics-Trends -and-Reports/CMSProgramStatistics/2015/2015_Main.html Centers for Medicare & Medicaid Services (CMS). (2017c). CMS quality measure development plan: Supporting the transition to the quality payment program 2017 annual report . Retrieved from https://www.cms.gov/Medicare/Quality -Initiatives-Patient-Assessment-Instruments/Value -Based-Programs/MACRA-MIPS-and-APMs/Draft -CMS-Quality-Measure-Development-Plan-MDP.pdf Centers for Medicare & Medicaid Services (CMS). (2017d). CMS’s program history: Medicare and Medicaid. Retrieved from https://www.cms.gov/About-CMS/Agency Information /History/index.html Centers for Medicare & Medicaid Services (CMS). (2017e). Medicare and Medicaid milestones. Retrieved from https://www.cms .gov/About-CMS/Agency-Information/History/Downloads /Medicare-and-Medicaid-Milestones-1937-2015.pdf Centers for Medicare & Medicaid Services (CMS). (2017f ). National health expenditure data fact sheet: Historical NHE 2015 . Retrieved from https://www.cms.gov/research -statistics-data-and-systems/statistics-trends-and-reports /nationalhealthexpenddata/nhe-fact-sheet.html Centers for Medicare & Medicaid Services (CMS). (2017g). President milestones . Retrieved from https://www.cms.gov/About -CMS/Agency Information/History/Downloads/President CMSMilestones.pdf Centers for Medicare & Medicaid Services (CMS). (2017h). Quality Improvement Organizations. Retrieved from https://www.cms.gov/Medicare/Quality-Initiatives-Patient -Assessment-Instruments/QualityImprovementOrgs /index.html Congressional Budget Office. (2017). An update to the budget and economic outlook , 2017–2027 . Retrieved from https:// www.cbo.gov/publication/52801 Cubanski, J., & Neuman, T. (2016). The facts of Medicare spending and financing . Henry J. Kaiser Family Foundation. Retrieved from http://www.kff.org/medicare/issue-brief /the-facts-on-medicare-spending-and-financing/ Manchikanti, L., Caraway, D., Parr, A. T., Fellows, B., & Hirsch, J. A. (2011). Patient Protection and Affordable Care Act of 2010: Reforming the health care reform for the new decade. Pain Physician, 14, E35 –E67. Rettenmaier, A. J., & Saving, T. R. (2016). Paying for Medicare now and in the future. Retrieved from http://www.ncpa .org/pdfs/sp_medicare_study_options.pdf Schaeffer, D., & Schaeffer, I. (2015). Medicare made 123 easy. Cave Creek, AZ: American Retirement Advisors Inc. Spitalnic, P. (2015). J statement of actuarial opinion. In Boards of Trustees, Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds, 2015 annual report of the Boards of Trustees of the Federal Health Insurance and Federal Supplementary Medical Insurance Trust Funds (Appendix, pp. 258 –259). Retrieved from https://www.cms.gov/Research-Statistics -Data-and-Systems/Statistics-Trends-and-Reports /ReportsTrustFunds/Downloads/TR2015.pdf Thorpe, K. E., Ogden, L. L., & Galactionova, K. (2010). Chronic conditions account for rise in Medicare spending from 1987 to 2006. Health Affairs, 29 (4), 718 –724. U.S. Department of Health and Human Services. (2017a). HHS FY 2017 budget in brief - CMS – Medicare: 2017 legislative proposals. Retrieved from https://www.hhs .gov/about/budget/fy2017/budget-in-brief/cms/medi care/index.html#proposals U.S. Department of Health and Human Services. (2017b). HHS FY 2017 budget in brief - CMS – Medicare: CMS budget overview . Retrieved from https://www.hhs.gov /about/budget/fy2017/budget-in-brief/cms/medicare /index.html#overview U.S. Department of Health and Human Services. (2017c ). HHS FY 2017 budget in brief - CMS – Medicare: Highlights of the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA). Retrieved from https://www.hhs.gov /about/budget/fy2017/budget-in-brief/cms/medicare /index.html#macra U.S. Department of Health and Human Services. (2017d). HHS FY 2017 budget in brief - CMS – Medicare: Medicare Quality Improvement Organization. Retrieved from https://www.hhs.gov/about/budget/fy2017/budget-in brief/cms/medicare/index.html#quality U.S. Department of Health and Human Services. (2017e). HHS FY 2017 budget in brief - CMS – Medicare: The four parts of Medicare. Retrieved from https://www .hhs.gov/about/budget/fy2017/budget-in-brief/cms /medicare/index.html#parts 248 Chapter 11 Medicare: Protector to Innovator CASE STUDY Preserving the Cognitive Status of Older Surgical Patients: A Case Study Steven Baumann After reviewing some of the current literature on what is now known as postoperative cognitive decline or dysfunction (POCD), this case study will consider the case of an older adult surgical patient and one hospital’s efforts to reduce the incidence and severity of delirium to illustrate that more needs to be done to preserve the cognitive status of older adults. It will also offer some recommendations for practice, policy changes, and further research to reduce the incidence and severity of POCD. Thanks to improvements in surgery and anesthesiology, surgical procedures are now routinely being done on persons of advanced age, including those with multiple comorbidities and various vulnerabilities, including those at risk for or in early stages of cognitive decline. In the context of an aging population this translates into increased numbers of older surgery patients, some who undergo multiple surgeries. As a result of this demographic shift and advances in medicine, more surgical procedures are done on persons over age 65 in the United States than on people under age 65 (Inouye et al., 2016). While their survival and postoperative infection rates are carefully monitored by hospitals and various agencies, the frequency and consequences of postoperative delirium (POD) and postoperative cognitive decline or dysfunction (POCD) continue to go unidentified and underreported; therefore, these clinical entities are generally missed by the general public and healthcare financers, all to the detriment of seniors, their caregivers, and society in general. The consequences of POD and POCD are increased rates of disability, decreased quality of life, higher healthcare costs, and increased need for institutionalization (Inouye et al., 2016).

In other words, there is an important opportunity to prevent irreversible cognitive decline in later life and reduce the burden on caregivers and the U.S. economy that is missed. According to Inouye and colleagues (2016) and others (Cavallari et al., 2016; Fong et al., 2015), postoperative delirium (POD) is more common and detrimental to older adult surgical patients than previously thought, and POCD is an irreversible and progressive neurocognitive syndrome. It is estimated that 10% to 25% of older adult surgical patients have postoperative complications; postoperative delirium (POD) is the most frequent (Inouye et al., 2016). Of the patients who have POD, around 40% never return to their preoperative cognitive status (O’Brien, Mohan, O’Hare, Reynolds, & Kenny, 2016). As illustrated by the case below, the traditional care of the older surgical patient is doing them more harm than previously thought. This individual patient case study and hospital-wide case study seeks to inform nurses about POD and POCD, so that they can take a leading role in hospitals and ambulatory surgical sites to change healthcare practice and policy in ways that protect and preserve the cognitive integrity of older adults, and prevent the need for burdensome assistance from their caregivers. In other words, the costs and benefits of surgery in later life need to be recalculated in light of the new information coming out about impact of surgery and anesthesia on cognitive functioning. Older adult patients and their families need to be better informed about these issues and greater efforts needs to be made to minimize the short- and long-term risk that major surgery and anesthesia represents to older adults.

Because this might involve delaying or avoiding surgery, such a change may reduce the number of revenue-generating procedures done in hospitals and ambulatory surgical centers; therefore, such information and practice changes may be met with institutional, as well as individual, barriers to change. Healthcare and hospital policy, economics, and technology play an important role in implementing the changes suggested in this case study.

Postoperative Cognitive Decline According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (American Psychiatric Association, 2013), delirium is a neuropsychological syndrome characterized by disturbance of attention Case Study 249 CASE STUDIES and awareness that develops over a short time period. Delirium involves disturbances in cognition and perception that are not better explained by a preexisting dementia. It is estimated that 29% to 64% of hospitalized older adults experience delirium; of these, nearly half had some level of delirium on admission to the hospital (Inouye, Westendorp, & Saczynski, 2014). Postoperative delirium (POD) is a change in mental status that is distinct from withdrawal effects of anesthesia, which are common in the first 24 hours after surgery. Postoperative delirium therefore usually begins 24 to 72 hours after surgery (Silverstein & Deiner, 2013) and it usually associated with multiple etiological factors. Postoperative cognitive decline (POCD) is a relatively newly recognized postoperative complication; because definitions of the phenomenon remain somewhat unclear, its incidence remains uncertain. Like posttraumatic stress disorder (PTSD), POCD follows a specific event, in this case a surgery or multiple surgeries.

Also like PTSD, the person’s presurgical mental and medical health are important contributing factors, and some think that POCD represents an unmasking of preexisting cognitive deficits, rather than a new pathology. In either case, POCD represents cognitive decline that is greater and more rapid than is normal cognitive aging, but usually less severe than Alzheimer’s dementia.

Postoperative cognitive decline has been described as a biphasic condition, in that postoperative delirium often improves but the improvement is not sustained, and a rather rapid decline follows (Cavallari et al., 2016). Some of the mechanisms that account for POD also contribute to POCD, and conditions are seen as multifactorial geriatric syndromes.

Surgery and anesthesia, particularly in older adults, are significant biochemical and physiologic stressors. The presence of suspected biomarkers for dementia (alpha beta, tau, phosphorylated tau, alpha beta40/tau, alpha beta42/tau ratios, and apolipoprotein E-E4 genotype) increases the risk for both POD and POCD (Fong et al., 2015). While the science regarding the prevention of POCD is still evolving, the overlap of POD and POCD suggest that nursing interventions to reduce delirium in the hospitalized patient, particularly those who also had surgery, should also be helpful and important to reduce the incidence and degree of POCD. Likewise, the characteristics of the surgery, such as its duration and type, and the type and amount of anesthesia used contribute to the risk of POCD in older adults. The following describes a case study of an older male having surgery in which the prevention of POD and POCD was not anticipated or prevented; it is here to illustrate how routine practice needs to be changed in light of the above described new information.

Case Study Mr. Harris is a 72-year-old married white male, who is a retired New York City detective. His medical history includes hypertension, hypocholesteremia, and gastroesophageal reflux disease, each of which is fairly well controlled. He presents to his primary care provider with a complaint of worsening hematuria and dysuria with urinary frequency.

He is referred to a urologist, who after doing an ultrasound of the bladder, recommends cystoscopy and bladder polyp removal. Mr. Harris’ current medications are amlodipine (Norvasc) 5 mg daily, pantoprazole (Protonix) 40 mg daily, and simvastatin (Zocor) 20 mg at bedtime. He has no known drug allergies, but he smokes one pack of cigarettes per day, a habit he has had for nearly 50 years. He drinks two cans of beer each night, which is less than he used to drink when he was younger. Just prior to his scheduled cystoscopy and bladder polyp removal, his complete blood count and metabolic panel results are within normal limits.

Routine Preoperative Assessment and Care On the day of the procedure Harris’ only new complaint is that he has not slept for the past two nights, anxious about the procedure and fearful about the possible findings. He has been informed, and is aware from this own internet search, that a biopsy specimen will be tested and that bladder polyps are often cancerous. On examination, his blood pressure is 132/70 mmHg, heart rate is 62 beats per minute, respiration rate is 16 per minute, and his oral temperature is 97.6°F. The pulse oximeter displays his oxygen concentration on room air as 98%. His height is 5’8” (68 in) and his weight is 172 lbs. (78.1 kgs), giving him a BMI of 26.2. On physical examination, there is no heart murmur, jugular venous distention, or peripheral edema. His electrocardiography is normal. His lungs are clear, with no evidence of 250 Chapter 11 Medicare: Protector to Innovator CASE STUDIES wheezing, rhonchi, or rales. His abdomen is soft and nontender; there are bowel sounds in all four quadrants. There are no abnormalities in his gait or restrictions in range of motion. His laboratory results, including liver enzyme tests, creatinine, and BUN, are within the normal range for an older adult male. He is prescribed ciprofloxacin 200 mg via IV to be administered 1 hour preoperatively.

Mr. Harris’ Postoperative Course Postoperatively continuous bladder irrigation (CBI) is ordered for Mr. Harris requiring that he be admitted to the hospital for his procedures.

While Mr. Harris is in the postanesthesia care unit (PACU), he receives two doses of fentanyl 25 mcg via intravenous (IV ). As per routine, once medically stable he is transferred to a medical-surgical unit, where he receives an additional dose of ciprofloxacin 200 mg IV, the fentanyl order is discontinued, and he is provided with an order for oxybutynin (Ditropan) 5 mg on an as-needed basis. He receives one dose of oxybutynin at 2:00 p.m.; the evening nurse making her rounds finds him restless and confused, and he says to her, “Why are there strangers in this room.” The nursing staff tries to calm him and decides to move him closer to the nurse’s station and suspends the bladder irrigation. Despite these interventions, Mr. Harris becomes more confused and agitated, and attempts to leave the hospital.

His wife is contacted and asked to return to the hospital in the hopes that she can help calm and reorient him, but she fails to do so. The patient is at this point very agitated, so the nurse calls the house physician to evaluate the patient. An order for lorazepam 1 mg stat is provided with wrist restraints. Because of this postoperative delirium complication, Mr. Harris’ stay in the hospital was extended an additional day, and by the second night he is calmer, although he remained mildly confused. He was generally alert and oriented the next afternoon, so he was discharged. While he generally returned to baseline and remained there over the next 3 weeks at home, his wife noticed that he was not the same in the months that followed the procedure and his cognitive status continued to gradually deteriorate over the next 6 months, such that his wife began to suspect he might be in an early stage of dementia. At this point she became afraid to let him drive or leave him alone at home. Before discussing Mr. Harris’s case further, a hospital-wide effort to reduce delirium will be first be discussed.

South Shore University Hospital The hospital where Mr. Harris was admitted is described here as South Shore University Hospital.

It is a 591-bed regional academic medical center in the northeastern United States. Located in a busy suburban area less than 30 minutes from New York City, this hospital offers multiple surgical specialties, offering patients a wide range of surgical interventions performed within its 24 operating rooms, and postoperative levels of care from intensive care to medical-surgical units. It was identified in 2016 that acute delirium, like Mr. Harris’ case, was frequently occurring and creating longer lengths of stay. Older patients who were admitted for routine surgical procedures, who should be home in a day or two, were developing delirium and would end up staying longer, and many of them needed transfer to a subacute rehab setting instead of home. Aside from the disruption in the lives of patients, like Mr. Harris, and their families, there are other risks of adverse events for older adults the longer they stay in the hospital.

Preventing POD therefore reduces the risk of other adverse events, including POCD (Blazer, Yaffe, & Liverman, 2015; Xie, 2016). Recognizing that prevention of acute delirium should be a priority goal in any inpatient healthcare setting, South Shore University Hospital administration assembled an interdisciplinary committee, which came to be known as the Delirium Prevention Team. On the team was a geriatrician; the chairs of both the departments of surgery and anesthesiology; the directors of nursing operations, nursing education, laboratory, radiology, and the blood bank; as well as staff nurses, clinical informaticists, and members of the engineering department. Several strategies were discussed and implemented, requiring changes in the operations of multiple departments. The proposed changes were based on a paradigm shift from an individual-level provider-centric model to a patient-centric model, with the specific goal of the prevention of delirium, including POD and POCD. The primary objective in determining which strategies to focus on extended from the understanding that one of the key ways to prevent delirium was to make sure patients would have Case Study 251 CASE STUDIES more regular sleep–wake cycles, with at least 5 hours of uninterrupted sleep. The decision made was to create the midnight to 5:00 a.m. time frame as protected time. Every effort, aside from a clinical emergency, was made not to interrupt the patient during this time. Previously, surgical patients had blood drawn at 4:00 a.m. This time was a tradition at the hospital, to assure laboratory results would be available for the surgical team to make their morning rounds scheduled for 7:00 a.m., and the first case in the operating room could start at 8:00 a.m. After considerable deliberation, it was decided that premade order sets were not adequately individualized; many included 4:00 a.m. blood draws that were not clinically indicated. Many of those blood tests were eliminated or moved to the evening before in order to reduce the number of blood tests drawn early in the morning. Reducing the number of early morning laboratory tests made it possible for those who still needed them to be able to get them done at 5:00 a.m., and they would still receive results on time. The role of the clinical informaticists was to design new electronic order sets, and adjust the electronic medical record to prevent providers from being able to order tests prior to 5:00 a.m., unless critically emergent. Chest X-rays and electrocardiograms were also not being done before 5:00 a.m.—or not at all—as this team also focused on resource utilization and specific clinical indication for tests or procedures. Early morning processes were also streamlined to minimize the disruption to the patient. South Shore University Hospital, for several years, had a quiet time in place at 3:00 p.m. This practice included dimming unit lights and reducing the volume of overhead paging for 1 hour to promote patient rest and sleep. Signs had been hung to encourage quiet time. The Delirium Prevention Team recognized that this practice could reduce sleep at night, so the practice was stopped. Curtains and blinds were kept open during daylight hours. These strategies have been observed to reduce the incidence of delirium. One of the biggest changes and challenges was to get the nurses to not allow patients to sleep during the day, even if they had been up the night before with delirium. The engineering department was an integral part of this team and new strategies. At the time of the team’s implementation, a grateful family had donated a considerable amount of money to the hospital to renovate one of the patient care units and upgrade the bedside technology for patient use. This included providing tablets and updated televisions in each patient room. The funding was also used to identify lighting equipment that might assist in facilitating a proper sleep–wake cycle. The new lighting would automatically get brighter during the day and dim at night, providing visual cues to both patient and staff for proper wakeful times and sleep times. The team also developed a patient/family brochure that is given to all patients at the time of admission. This brochure explains delirium, the possible causes, the common behaviors, and some advice on what family and friends can do to help.

This brochure has enabled the nurse to begin the conversation with the patient and family about delirium, as it can be a very frightening experience for both the patient and the family. South Shore University Hospital required all staff to be educated on delirium, including POD and POCD, and strategies were put in place on hire and on an annual basis, with the goal of preventing acute delirium and potentially reducing the incidence of POCD.

Individual Practice Change Recommendations Returning to the specific case of Mr. Harris, it is important for nurses to be aware of the key role they play in preoperative and postoperative assessment and teaching, and therefore they are in a key position to calculate the risk for POD and POCD and intervene in a way to reduce its incidence and severity. In addition to the above hospital-wide education and changes to improve nighttime sleep and reduce delirium, hospital and home care nurses need new knowledge, tools, and skills to reduce POCD. In the case of Mr. Harris, his need for surgery was not in question, nor is it clear if delirium could have been prevented, but alternative medical and nursing care as described above could have reduced its severity, and perhaps avoided the POCD. Cognitive baseline assessment should be done on all older surgical patients with use of a validated assessment tool, such as the Confusion Assessment Method (CAM). Mr. Harris’s risk for postoperative cognitive delirium and decline was increased by his smoking, alcohol 252 Chapter 11 Medicare: Protector to Innovator CASE STUDIES use, stress, fatigue on the day of the procedure, pre- and postoperative pain, use of opioids, age, as well as use of ciprofloxacin and oxybutrin, which are both on the American Geriatric Society (AGS)’s Beers Criteria for potentially inappropriate medication use in older adults (American Geriatric Society, 2015). Mr. Harris lack of sleep prior to his procedure was also a modifiable risk factor for POD and POCD.

Disturbance in one’s circadian rhythmicity, which is associated with intrinsic melatonin’s metabolite 6-sulfatoxymelatonin (6-SMT ) fluctuating, has been associated with POCD ( Wu, Wang, Wu, & Yue, 2014). Newman, Wilkinson, & Royse (2015) also reported those older surgical patients (49.2 vs. 45.2) who have difficulty eating and have lower body temperatures are slower to clear cognitively after surgery. The recognition and management of underlying individual level risk factors is imperative to the prevention of POCD.

Ongoing professional educational programs regarding POCD are needed for all members of the healthcare team. Modifiable predictor factors should be targeted for interventions to prevent or preempt POCD. In addition to sleep, improved management of pain, stress, and nutritional status with as little opioid analgesics, benzodiazepine, and antipsychotic medication use as possible is the goal. Nonpharmacological interventions and environmental practices known to reduce delirium should also help reduce the risk of POCD.

Conclusion This case study is an example of how the traditional approach to surgery can do a disservice to the older adult surgical patient and a paradigm shift involving multiple hospital departments working together is needed to reduce the incidence and severity of POD and POCD.

Case Study Questions 1. What are the nature of barriers that remain to recognition of POD and POCD in older surgical patients and what individual and system-wide changes are needed where you work to help maintain the cognitive integrity of older adults? 2. While this case study did not discuss any of the research currently being done on changes in surgery and the use of anesthesia, including the use of electroencephalogram during surgery to reduce the amount of anesthesia needed, it does ask the question: What contribution can nursing research make to prevent cognitive decline in older adults? 3. How can nurse educators package innovative nursing educational materials, including virtual simulation, to distribute the knowledge and skills needed by all hospitals and ambulatory surgical centers to make the changes suggested above? References American Geriatrics Society 2015 Beers Criteria Update Expert Panel. (2015). American Geriatrics Society 2015 Updated Beers Criteria for Potentially Inappropriate Medication Use in Older Adults. Journal of the American Geriatrics Society, 63 (11), 2227–2246. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author. Blazer, D. G., Yaffe, K., & Liverman, C. T. (2015). Cognitive aging: Progress in understanding and opportunities for action . Washington, DC: National Academies Press. Cavallari, M., Dai, W., Guttmann, C. R., Meier, D. S., Ngo, L. H., & Hshieh, T. T., . . . Alsop, D. C. (2016). Neural substrates of vulnerability to postsurgical delirium as revealed by presurgical diffusion MRI. Brain , 139 , 1282–1294. doi: 10.1093/brain/aww010. [Epub 2016, February 26.] Fong, T. G., Hshieh, T. T., Wong, B., Tommet, D., Jones, R. N., & Schmitt, E. M., . . . Inouye, S. K. (2015). Neuropsychological profiles of an elderly cohort undergoing elective surgery and the relationship of cognitive performance with delirium. Journal of the American Geriatrics Society, 63 (5): 977–982. doi:10.1111/jgs.13383. Inouye, S. K., Marcantonio, E. R., Kosar, C. M., Tommet, D., Schmitt, E. M., & Travison, T. G., . . . Jones, R. N. (2016). The short-term and long-term relationship between delirium and cognitive trajectory in older surgical patients. Alzheimer’s & Dementia , 12, 766–775. http:// dx.doi.org/10.1016/j.jalz.2016.03.005. Inouye, S. K., Westendorp, R. G., & Saczynski, J. S. (2014). Delirium in elderly people. Lancet , 383, 911–922. doi: 10.1016/S0140-6736(13)60688-1. Newman, S., Wilkinson, D. J., & Royse, C. F. (2014). Assessment of early cognitive recovery after surgery using the Post-Operative Quality of Recovery Scale. Acta Anaesthesiology Scandinavia, 58 , 185–191. O’Brien, H., Mohan, H., O’Hare, C., Reynolds, J. V., & Kenny, R. A. (2016). Mind over matter? The hidden epidemic of cognitive dysfunction in the older surgical patient. Case Study 253 CASE STUDIES Annals of Surgery , [Epub ahead of print], PMID: 27537541 doi: 10.1097/SLA.0000000000001900. Silverstein J. H., & Deiner, S. G. (2013). Perioperative delirium and its relationship to dementia. Progress in Neuro- Psychopharmacology & Biological Psychiatry. 43, 108–115. doi: 10.1016/j.pnpbp.2012.11.005. Wu, Y., Wang, J., Wu, A. & Yue, Y. (2014). Do fluctuations in endogenous melatonin levels predict the occurrence of postoperative cognitive dysfunction (POCD)? International Journal of Neuroscience, 124 (11), 787–791. doi: 10.3109/00207454.2014.882919. Xie, Z. (2016). The mechanistic studies of postoperative delirium and cognitive dysfunction in rodents. Paper presented at the New York Academy of Science conference on Surgery and Cognition Delirium, Cognitive Decline, and Opportunities to Protect the Brain. New York, NY. Retrieved from http://www.nyas.org/MediaPlayer.aspx?mid =3bcd7e43-962e-4d94-8ba4-a884e5d1f2b8 254 Chapter 11 Medicare: Protector to Innovator CASE STUDIES © Anthony Krikorian/Shutterstock Medicaid and the Financing of Care for Vulnerable Populations: A Story of Misconceptions Barbara Caress and Nancy Aries OVERVIEW Unlike any other country, access to health care in the United States is based on key social attributes such as immigration status, income, employment, disability, age, and parentage. This results in tremendous inequities in health insurance entitlement and the level of benefits received. Medicare was a breakthrough, opening eligibility to all elderly persons. At the time, it was assumed that Medicare would be the first step to universal coverage, but this has not happened. Instead there is Medicaid, Medicare’s poorer cousin. Medicaid comes in two variants. Original Medicaid for the very poor—the federal government sets a loose set of parameters regarding services and eligibility and matches the states’ payments for services. Although many people think Medicaid covers all very low-income and vulnerable people, that is not true. Because states determine income cutoffs for eligibility, many persons living in poverty are not eligible. At the same time, original Medicaid is the major source of support for previously non-poor elderly persons and those with disabilities because it covers long-term care services such as nursing homes and home health care that are not covered by Medicare. The second variant is Medicaid offered as part of the Affordable Health Care Act (ACA). Extending income eligibility and setting national standards would have created a more seamless system of financing for America’s low-income population, but the Supreme Court decision in 2012 allowed states to choose whether or not to participate. At this time, 33 states are participating in the Medicaid expansion. The expansion is being actively considered by 3 more states. At the same time, the Trump administration and 11 states are seeking federal approval to impose new barriers to Medicaid enrollment. 255 CHAPTER 12 ▸ Introduction Unlike other countries, the United States has cre - ated a healthcare system in which access to care is based on social criteria. There is private insur - ance for many employed members of society and their dependents, although a declining percent - age (from 71% in 2009 to 66% in 2014) of the workforce receives employer-based health insur - ance (Long, Rae, Claxton, & Damico, 2016). The elderly are enrolled in government-sponsored Medicare, covering hospitalization in Part A and doctors in Part B. Having worked through - out their lifetimes, these individuals are viewed as deserving of benefits to which they contrib - uted while employed. The government also pays for the most vulnerable, low-income populations who had been eligible for income support. His - torically this has included children, some of their parents, the disabled, and the elderly. With the ACA, government-paid (ACA Medicaid) or as - sisted (ACA marketplace) coverage has expanded. The different modes of health insurance do not ensure that every American has access to health coverage and health services. There are still large groups in the population who are left out because they are uninsured or underinsured (Kaiser Commission on Medicaid and the Un - insured, 2013b). Among the 27.6 million who were still uninsured at the end of 2015, 46% re - ported that they could not afford it even with ACA subsidies. In fact, 84% of the people paying the tax penalty for failure to have health insur - ance made less than $50,000 a year. Even with today’s government program, 5.4  million are still uninsured due to their immigration status, in addition to the 2.6 million who are very low- income residents of one of the states that did not expand Medicaid coverage. In the past, to fill some of the gaps in cov - erage, a number of federal, state, and local pro - grams were developed to ensure that there was some minimal floor of health care for everyone.

Most large cities had at least one large public hospital that cared for the poor (Starr, 1982). In the 1960s a large number of community health centers were built in low-income rural areas, and then in economically disadvantaged urban communities (Sardell, 1988). Public health de - partments organized clinics for persons with communicable diseases, such as tuberculosis (TB) and acquired immunodeficiency syndrome (AIDS), and other programs for special popula - tions and services, such as school-based care or family planning (Rosenbaum, 2011). The patchwork ways in which access to health care has been defined creates disparities in access and quality of care. People with excel - lent health insurance and limited out-of-pocket obligations can generally get care from a wide range of providers who participate in their net - work. However, Medicaid recipients and many people insured through the ACA often have access to smaller lists of providers (known as a “narrow” network) due to the low reimburse - ment rates that result in nonparticipation. And, of course, uninsured people have only as much access as they can afford to pay out of pocket.

Where people live also impacts their health out - comes. Academic medical centers tend to be located in urban areas and make it easier for people needing complex care to access these OBJECTIVES ■ Consider why access to health care is more limited in the United States than other industrialized nations. ■ Explain how Medicaid can be a safety net but not cover all persons who live in poverty. ■ Analyze the critical role Medicaid plays in supporting long-term care for the elderly and disabled. ■ Describe how and why original Medicaid and ACA expansion are different. ■ Describe who remains uninsured and why that matters. 256 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations services than persons who live several hours away (Schwamm, 2014). These differences are further aggravated by differences among states.

Although disparities exist between rich and poor, white and black, educated and nonedu - cated, urban and rural, a low-income person in a top-performing state on The Commonwealth Fund scorecard may fare better than advantaged populations in low-performing states (Radley, McCarthy, & Hayes, 2017). This chapter will examine how care is fi - nanced for vulnerable populations and the con - sequences of these organizational choices. The chapter begins with a comparison of the United States to other developed nations. Such a compar - ison is critical to understanding how the choice to make access dependent on social criteria leads to worse health outcomes. Next the chapter will review the original Medicaid program because it is the primary source of care for many low- income people. It will consider the populations served by original Medicaid, the high costs of Medicaid, and the significance of Medicaid being a feder - ally mandated and state-implemented program.

This means there is no one Medicaid program; rather, there are 50 different programs with 50 sets of outcomes. ACA Medicaid is quite differ - ent. While still a state option and state adminis - trated, it includes federally established income and immigration status criteria and a fixed set of coverages. The discussion would not be com - plete without an examination of the impact of health insurance coverage on the health of the people being served. And the flip side—the ef - fect of being uninsured on well-being.

▸ Health Outcomes in the United States in Relation to 10 Developed Nations Most Americans assume that the United States has the best healthcare system in the world. This is true for many people, but it is also true that millions of Americans receive subpar care. To understand the variance that exists in the United States, a good place to begin is by examining the U.S. in comparison to other developed nations.

While there are many differences among these healthcare systems, the fact that the U.S. is the only nation to define access to care based on so - cial classifications impacts both access to and affordability of care. A study of health system performance thus becomes a way to demonstrate the extent to which different modes of access have resulted in disparate outcomes. Every year The Commonwealth Fund con - ducts a survey of 11 developed nations concern - ing access and affordability of care. TABLE 12-1 highlights some findings from the 2017 survey.

First to consider is the percentage of adults who had problems getting medical care due to cost issues. In the United Kingdom, only 1% of re - spondents reported cost problems compared to 20% of U.S. respondents. In the U.S., 58% re - ported not seeing a doctor. The next closest re - sponse was 22% in Switzerland. The second indicator to consider is out- of-pocket spending. In Sweden, only 4% re - ported having spent more than $1,000 out of pocket. In the United States, 36% of respon - dents spent more than $1,000 out of pocket. Interestingly, this percentage does not vary greatly between the insured and the uninsured. Amer - icans are confronted with high out-of-pocket expenses because U.S. mandated out-of-pocket limits exclude many common expenses such as eye glasses, dental, and out-of-network care. High spending did not translate into ex - cellent health outcomes. In fact, 21% of Amer - ican adults suffered from two or more of five common chronic conditions. Adults in the 10 other countries surveyed were healthier. Can - ada trailed the U.S. by 5 points, 16%, and the next highest, France, had 12% of adults aged 18 to 64 suffering from two or more common chronic diseases. Nor does the extra spend - ing produce exceptionally better treatment results for breast cancer. The U.S. 5-year rela - tive survival rate is tied for first with Norway and Sweden. Lastly and more tellingly, deaths Health Outcomes in the United States in Relation to 10 Developed Nations 257 from conditions amenable to health care such as diabetes and appendicitis are much higher in the U.S. than in any of the 10 other coun - tries in the survey. The importance of considering the United States in the context of other developed nations is to demonstrate the variance that exists and to suggest that the differences can be attributed in part to the complexity of the healthcare sys - tem in the United States and the limited access to care due, in part, to the inequitable distribu - tion of health insurance. TABLE 12-1 Adult Access and Affordability of Care in the United States and 10 Other Countries Nation Percentage of adults who: Had serious problems paying or were unable to pay medical bills Had $1,000 or more in out-of- pocket medical spending Had multiple chronic condi - tions 5-year breast cancer relative survival rate Mortality amenable to health care* Australia 5 16 10 88 62 Canada 6 15 16 88 78 France 23 7 12 – 61 Germany 4 5 8 86 83 Netherlands 7 7 9 85 72 New Zealand 5 7 9 86 78 Norway 8 13 12 89 64 Sweden 5 4 10 89 69 Switzerland 11 46 10 – 55 United Kingdom 1 4 10 81 85 United States 20 36 21 89 112 258 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations * Deaths per 100,000.Data from Schneider, E.C., Sarnak, D. O., Squires, D., Shah, A., & Doty, M. M. (2017). Mirror, mirror 2017: International comparison reflects flaws and opportunities for better U.S. health care. The Commonwealth Fund. ▸ Populations Served by Original Medicaid Original Medicaid was the primary safety net insurer of low-income persons younger than age 65 years who had no other payer for med - ical care. It was enacted in 1965. The common assumption was that Medicaid was a program for low-income children and, sometimes, their parents. The reality is that original Medicaid overwhelmingly finances care for disabled and elderly people. Health spending for elderly persons is rarely associated with Medicaid because it is mistak - enly assumed that their healthcare services are paid by Medicare. Medicare payments, how - ever, stop at the door of acute care recovery.

Thus, the long-term care services needed by low-income elderly are paid by Medicaid. The reasons go back to the original alignment of Medicaid in the 1960s with welfare programs.

While medicine and Medicare were limited to the treatment of diseases that could be im - pacted by the intervention of healthcare pro - viders, Medicaid was understood to be part of the social welfare system that covered a range of services that fall at the intersection of medi - cal care and social services. This included nurs - ing homes, intermediate care facilities, mental health facilities, and home health and personal care (Rosenbaum, 2009). When cash support provided by Social Security was not adequate to cover these services they were classified as a health-related service and thus fell under the eligibility guidelines for Medicaid (Brown & Sparer, 2003). Nonelderly disabled people are also an in - visible Medicaid population (Vladeck, 2003).

This is a heterogeneous group that has tradi - tionally been served by other state agencies but whose care is increasingly paid for by Medicaid.

Included in this group are physically disabled children and adults, developmentally disabled adults, the mentally ill, and persons with AIDS and substance abuse problems. Eligibility rules have changed over time to extend services to larger groups of low- income people, but the basic structure of the program remains the same. Children are de - fined as age 18 years and younger. During the past two decades, income eligibility for this group has been expanded. Adults age 19 to 64 years were originally defined as mothers who receive welfare benefits. This group was ex - tended to include more parents of eligible chil - dren, pregnant women, and a small number of people who are eligible through the Breast and Cervical Cancer Prevention and Treat - ment Act of 2000. The original categorization of the aged, blind, and disabled is now broken into two groups: those aged 65 years and older and disabled, and people younger than age 65 years who have physical, mental, or emotional conditions that prevent them from perform - ing the activities of daily living. In 2010, three-quarters of Medicaid recip - ients were women and children. With ACA ex - pansion, 43% are children and 34% are adults.

Less than 10% of enrollees are elderly, and only 14% are disabled. But the percentage of expen - diture is not parallel to enrollment. Children represent nearly half of enrollees but account for only 19% of spending. Even adults account for a smaller percentage of spending than en - rollment. Looking at TABLE 12-2 it is obvious that the preponderance of Medicaid expendi - tures is for services to the disabled and elderly.

Spending on the disabled is nearly three times greater than the percentage of disabled people who are enrolled in Medicaid. Disabled indi - viduals account for one in seven enrollees and 40% of Medicaid spending. Spending on the el - derly is nearly two times greater than the per - centage of elderly (9% of all enrollees and 21% of spending). Taken together, the disabled and elderly are less than one-quarter of enrollees but incur almost two-thirds of program spending.

Populations Served by Original Medicaid 259 ▸ Original Medicaid Is Different Program in 50 States and Washington, DC Another common misconception about original Medicaid is that knowing how it works in one state can be generalized to the other 49 states and the District of Columbia. This could not be further from the truth. Medicare, like Medicaid, was enacted in 1965 during Lyndon Johnson’s presidency, and is a federally mandated and operated program of health insurance for the elderly. But Medicaid was linked to public as - sistance and shared responsibility of financing between the federal government and the indi - vidual states that varies in proportion. It was never meant to cover all low-income people.

The federal program provided states with gen - eral guidance about which populations would be eligible for services and the range of services that states were either mandated or given the option to provide. The implementation of these guidelines was to be determined by the states. It was assumed that states were in the best posi - tion to identify exactly who should receive care, what services would be included in the benefits package, and payment rates for services. During the past half century, Medicaid evolved into 51 different programs in populations served, the services provided, and provider payments. Al - though more than 60  million Americans re - ceived Medicaid prior to implementation of the ACA, only by looking at the evolution of state programs can the vast need for health care of low-income persons be understood. Medicaid eligibility is determined in two ways. Broadly, it covers three distinct popula - tions: low-income elderly, disabled people who receive federally assisted income maintenance through Supplemental Security Income (SSI), and low -income families and children who meet the Modified Adjusted Gross Income (MAGI) standards or live in one of the 36 states or the District of Columbia that offer Medicaid to people whose healthcare expenses have almost depleted their assets (‘spend-down’) or reside in TABLE 12-2 Medicaid Enrollment and Distribution of Payment by Enrollment Group, Fiscal Year 2010 Category Distribution of Medicaid Enrollees by Enrollment Group Distribution of Medicaid Payments by Enrollment Group Aged 9% 21% Disabled 14% 40% Adult 34% 19% Children 43% 19% Total 100% 100% Enrollees = 66,390,542 Expenditures = $81,507,921,594 Data from Kaiser Family Foundation (2017, January 3). Retrieved from https://www.kff.org/medicaid/state-indicator/medicaid-spending-by-enrollment-group /?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D 260 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations a state that accepts ACA Medicaid expansion for families earning less than 138% of the current poverty threshold. Medicaid also covers some re - lated groups that do not receive cash assistance but whose income puts them close to the pov - erty level. These groups include children, preg - nant women, certain Medicare beneficiaries, and recipients of adoption and foster care ser - vices. Such broad eligibility criteria initially re - sulted in relatively standard eligibility guidelines across states. When Medicaid was first passed, states covered most eligible persons at income cutoffs close to the poverty line. Over the past 50 years, the income cutoffs dropped to very low levels in many states. When Temporary Assis - tance to Needy Families (TANF) replaced AFDC in 1996, the U.S. Congress required states to im - plement a new Medicaid eligibility category for low-income families and set the minimum in - come standard at the same level as had been in effect in state welfare programs. In most states the income level was so low that many parents who worked at low-paying jobs that did not provide health insurance did not qualify for Medicaid. A year later Congress created the State Children’s Health Insurance Program (SCHIP), which ex - panded eligibility for low-income children. The unequal nature of eligibility for orig - inal Medicaid is demonstrated in TABLE 12-3, which shows income eligibility for Medicaid and SCHIP as a percentage of the federal poverty level in 2018. Federal law required that children age 6 to 18 years be covered at the poverty level, or 100%. However, states had the discretion to ex - tend eligibility to more children. Eighteen states funded children at the poverty level, and three states and the District of Columbia set income eligibility for children at 300% of the poverty level. The remaining 29 states fell somewhere in between. The eligibility levels for working par - ents are starker. Five states (Arkansas, Alabama, Indiana, Louisiana, and Texas) set eligibility at or below 25% of the federal poverty level. The federal poverty level for a household of three in 2018 was $ 20,790 (Office of the Assistant Secretary for Planning and Evaluation, 2018). Twenty-five percent of the federal poverty level for that same family was $4,881. This means that practically no low-income working parents are eligible for Medicaid in these five states. Thirteen states set the income eligibility below 50% of the federal poverty level. Twenty-eight states set the income eligibility below 75% of the federal pov - erty level, and 33 states set the income eligibility below 100% of the federal poverty level. Only 17 states set the eligibility cutoffs at or above the federal poverty level, with Minnesota setting the cutoff at 215% of the poverty level. The tremen - dous variation among states regarding income eligibility is inversely related to the number and percentage of working parents who were unin - sured by state (Schoen et al., 2013).

▸ Traditional Medicaid Costs and Variation by State Medicaid is also expensive. In fiscal year 2012, it covered over 65 million persons at a cost of $421 billion dollars (Kaiser Commission on Medicaid and the Uninsured, 2013a). The costs of Medic - aid are covered by federal, state, and local govern - ments. The federal share is based on average per capita income for each state relative to the national average. It ranges from 50% in 14 states (includ - ing New York, California, and North Dakota) to more than 70% in 10 states and the District of Columbia (including Mississippi, West Virginia, and Kentucky) (Kaiser Commission on Medicaid and the Uninsured, 2014). As of 2012, the state and local share for all of Medicaid was $183 billion (45%) of total spending (Martin, Harman, Whit - tle, Catlin, & National Health Expenditure Team, 2014). Despite federal support, Medicaid is often the largest part of state budgets and it is counter - cyclical, meaning Medicaid enrollment expands when the economy contracts, which puts state legislatures under tremendous pressure to make cuts to the Medicaid budget in times of fiscal aus - terity as they seek to lower taxes and control state spending (Sommers & Epstein, 2011). Traditional Medicaid Costs and Variation by State 261 Reproduced from Kaiser Family Foundation (2018). Medicaid Income Eligibility Limits for Adults in States That Have Not Implemented the Medicaid Expansion, January 2018. Retrieved from https://www.kff.org /medicaid/report/medicaid-and-chip-eligibility-enrollment-renewal-and-cost-sharing-policies-as-of-january-2018-findings-from-a-50-state-survey/. Accessed 06/29/18. AL MO MSGA VA OK WY NE TX ID FL KS NC SD UT TN ME SC WI 0% 50% 100% 138% 18 % 22% 27% 36%38% 43% 55%63% 18 %26% 33%38%43% 50% 60% 98% 1 05% 67% 1 00% Pa rents AL MO MSGA VA OK WY NE TX ID FL KS NC SD UT TN ME SC WI 0% 50% 100% 1 38% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 1 00% Childless Adults Not es: Eligibilit y levels ar e based on 20 18 federal po verty le vels (FPLs) and ar e calculated based on a fa mily of thr ee for par ents and an individual f or childless adults . In 2018, the FPL w as $20,780 fo r a family of thr ee and $1 2,140 fo r an individual. Thresholds include the standar d five per centage point of FPL disr egard. OK and UT pr ovide mor e limited coverage to some childless adults under Sectio n 1115 wa iver author ity. TABLE 12-3 Income Eligibility for Medicaid/CHIP as a Percentage of Federal Poverty Level, 2018 262 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations The higher costs of Medicaid can be at - tributed to the elderly and disabled. In effect, Medicaid is the safety net for middle-class per - sons who go bankrupt in old age due to the costs of long-term care. As a result, Medicaid is the major institutional payer for nursing homes and home care. In 2012, Medicaid accounted for 46% of nursing home and 73% of home health or per - sonal care expenditures (Centers for Medicare & Medicaid Services, 2014). Medicare spend - ing accounts for a smaller portion of these ex - penditures because its payments are limited to acute care and the recovery of persons from incidents associated with these acute episodes.

Medicaid, however, is more inclusive because it pays for the long-term care of persons with chronic conditions. Medicaid expenditures also reflect the ways that the 50 states have chosen to define covered services and payment rates. Even though the federal government pays the majority of costs, spending decisions are made at a local level.

States have discretion about what optional ser - vices to provide in addition to those mandated by the federal government and how to structure payment rates. TABLE 12-4 provides data for the five states that pay the least per beneficiary for Medicaid services and the five states that pay the most per beneficiary by enrollment group. There are tremendous variations among payments by the lowest-paying states and the highest-pay - ing states. The difference is least pronounced for children because they do not use a high volume of expensive healthcare services. Ne - vada paid $1,523 per child while New Mexico spent $5,136 per child. The larger differentials in payments for services can be found among the elderly and disabled. Georgia had the low - est payment for the elderly ($6,162) and Alaska paid four times more ($25,792). The differences are slightly greater in terms of payments for the disabled: Alabama spent $7,020 per beneficiary and North Dakota $33,765. Low payment rates can impact both access to and quality of services. Many physicians do not accept Medicaid patients because the payment is so low (Zuckerman, McFeeters, Cunningham, & Nichols, 2004). In Princeton, New Jersey, almost no physicians take Medicaid patients (Kitchen - man, 2014). This means that children who are eligible for Medicaid in that area cannot easily make an appointment for needed care. Likewise, poor payment rates impact working conditions and the quality of care (Grabowski, Angelelli, & Mor, 2004). Interviews with nursing home aides in Mississippi revealed a situation in which the aides, who are low paid, took it upon themselves to bring food to residents and cover for one an - other while they took soiled sheets to the laun - dromat so residents would not lie in their own feces (C. Schoen, personal interview, 2013). Al - though it is assumed that these institutions meet a minimum standard of care because they are reimbursed by Medicaid, they do not. Low payment also results in perverse in - centives where program eligibility can overlap.

Such is the case for elderly people who are eli - gible for Medicare and Medicaid due to their financial circumstances. These persons are re - ferred to as dual eligibles. Regulators are less concerned with the overall cost of a person’s care than with controlling the individual bud - get for which they are responsible. In the case of dual eligibles, Medicare prefers that Med - icaid pay, and Medicaid prefers that Medicare pay, even though the federal government pays most of both expenditures. For nursing homes this means that an elderly patient who has been hospitalized is admitted to the nursing home under Medicare, and Medicare is a good payer. When that person becomes a long-term patient, he or she becomes a Medicaid patient after exhausting personal savings and assets. If the same person is hospitalized, he or she be - comes a Medicare patient. Some states put a hold on the bed and Medicaid continues to pay the nursing home for the days that the patient spends in the hospital. When that individual re - turns to the nursing home, he or she once again becomes a Medicaid patient. The incentives are such that nursing homes are not penalized for hospitalizations. In fact, they are often paid when a resident is hospitalized and then they re - ceive the higher reimbursement rate when that Traditional Medicaid Costs and Variation by State 263 same resident is discharged back to their care (Schoen, October 20, 2013). Even with generally lower reimbursement rates, people with Medicaid still had much bet - ter access to care than the uninsured. There is a growing body of evidence that Medicaid coverage matters. One researcher tracked children in the earliest Medicaid cohort. Looking at the group first enrolled between 1965 and 1970, Andrew Goodman-Bacon documented extremely mean - ingful life differences—particularly in longevity and in lifetime earnings. Another study found that age-adjusted mortality in states with more generous eligibility standards was significantly better than the same statistic in states with less inclusive eligibility. A paper published in 2012, comparing adult (20–64 years of age) mortal - ity in three expansion states (Arizona, Maine, TABLE 12-4 Average Per Capita Medicaid Payments by Enrollment Group, Fiscal Year 2014 Five Lowest Spending States State Children State Adults State Elderly State Disabled Nevada $1,523 Arkansas $1,446 Georgia $6,162 Alabama $7,020 Wisconsin $1,762 California $1,803 S. Carolina $7,051 Georgia $8,999 Florida $1,822 Alabama $2,043 Maine $7,143 Mississippi $9,697 Louisiana $1,933 Nevada $2,222 Florida $7.281 Tennessee $9,826 Washington $1,969 Louisiana $2,488 Alabama $7,987 Kentucky $10,430 Five Highest Spending States State Children State Adults State Elderly State Disabled New Mexico $5,136 Alaska $6,893 Alaska $25,792 N. Dakota $33,765 Alaska $5,135 N. Dakota $6,377 N. Dakota $24,699 Minnesota $28,854 District of Columbia $4,442 Washington $6,018 Delaware $21,225 Alaska $28,388 N. Dakota $4,370 Delaware $6,011 New York $20,888 Rhode Island $25,936 Delaware $3,977 Tennessee $5,882 Pennsylvania $20,787 New York $24,905 Data from Kaiser Family Foundation, June 9, 2017. Retrieved from https://www.kff.org/medicaid/state-indicator/medicaid-spending-per-enrollee /?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D 264 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations and New York) with neighboring nonexpan - sion states, found a difference of 19.6 deaths per 100,000. The authors concluded, “Policy makers should be aware that major changes in Medicaid—either expansions or reductions in coverage—may have significant effects on the health of vulnerable populations” (Sommers, Baicker, & Epstein, 2012).

▸ ACA Medicaid The expansion of Medicaid is a linchpin of the ACA. With its passage, Congress changed Medicaid from a 50-state checkerboard of eli - gibility rules to a single national standard for very-low-income legal residents. The ACA en - sured that any uninsured adult living in a fam - ily with an income less than 138% of the poverty line would be entitled to coverage ($16,643 for an individual and $33,948 for a family of three in 2017). About $1.028 trillion was budgeted to be spent over 10 years to enroll an expected 21.3 million new Medicaid and SCHIP recipi - ents. The federal government was directed to fund 100% of the cost of expansion through 2016, and 90% after that. Depending on the state option, newly eligible people would receive the same benefit package as the state’s traditional Medicaid program or a special expansion pack - age, but in no case may the benefits be less than the 10 essential benefits offered on healthcare exchanges to other ACA participants. The program as described was cut short by a U.S. Supreme Court decision in 2012. Twenty-four states joined a petition filed by Florida challeng - ing the constitutionality of the ACA’s Medicaid expansion. If a state wished to continue to re - ceive the traditional federal funding match for its Medicaid program according the ACA, it was required to accept the expansion—funding, el - igibility, and benefit design. In a variety of split decisions, the Supreme Court found that the re - quirement was a coercive overstep of federal au - thority and declared that linking current funding with future funding was unconstitutional. Rather than the Medicaid expansion being mandatory, the court made it optional. Each state was per - mitted to decide whether to participate (Jost & Rosenbaum, 2012). As of June 2018, 33 states plus Washing - ton, DC had opted into the Medicaid expansion, 3 are considering expansion, and 14 have not adopted ACA Medicaid (Kaiser Family Foun - dation, June 2018) ( FIGURE 12-1). The Trump administration has encour - aged states to seek waivers that would permit new eligibility restrictions for enrollment in either traditional Medicaid, ACA Medicaid, or both. As of June 2018, 11 states have sought approval of work requirements— 4 have been approved and 7 are pending for both Medicaid and ACA Medicaid . While only an estimated 4–6% of participants would be disqualified by work require - ments, there is concern among analysts that these new qualifications and their attendant required documentation will effectively discourage a sig - nificant number of qualified applicants ( Garfield, Rudowitz, Musumeci, & Damico, 2018 ). About 12  million people are enrolled in Medicaid. But 2.4 million are caught in a cov - erage gap ( FIGURE 12-2). They are deemed too low income to pay any part of a premium for subsidized private coverage, and they are cat - egorically ineligible for help from the state in which they live. Although the court made expansion a state option, it left in place a number of ACA elements that are designed to impact the way care is provided to both insured and uninsured persons (Hess & Witgert, 2012). Among the most important is new models of integrated care, including accountable care organizations (ACOs), Community Care Networks, signifi - cantly increased support for community health centers, support for research and publication of quality standards and report cards, substantial support for workforce training, and greater sup - port for the National Health Service Corps (Riley, Berenson, & Carmody, 2012). Since the coverage expansion part of the ACA has been in place for only 4 years, findings about effects are still preliminary. However, some im - pacts are known on financial security, coverage, ACA Medicaid 265 Three-quarters of the uninsured live in families with at least one full-time worker; an - other 11% have at least one part-time worker.

White Americans are the largest uninsured group (45%) followed by Hispanic (32%), black (15%), and other race (8%) (Kaiser Family Foundation, September 2017).

▸ Health Insurance and the Health of Vulnerable People Since the very early days, local, state, and federal governments have grappled with ways to provide care for those who cannot afford or cannot ac - cess care for themselves. The United States be - gan down the road of universal, one-class care with provisions of the Social Security Act, which not only identified the elderly as a special needs group, but also identified a number of other spe - cial needs populations, including mothers and children, the disabled, and the blind. Since 1935 the nation has come a long way in creating a floor for all its citizens, but, as is evident from passage of the ACA, its rocky implementation, and the debate about repeal, there is still a long way to go. As we learn more about the social dimen - sions of health, good medical services are recog - nized as one of the best ways to counteract the ravages of poverty, racism, homelessness, and un - employment. Yet many Americans victimized by FIGURE 12-2 Medicaid Eligibility Thresholds and Coverage Gaps by State by Income for a Family of Three in 2017 Data from Kaiser Family Foundation. (March 15, 2017) . Retrieved from https://www.kff.org/medicaid/fact-sheet/where-are-states-today-medicaid-and-chip/ $0 $5,000 $1 0,000 $1 5,000 $20,000 $25,000 $30,000 $35,000 $40,000 $45,000 $50,000 Alabama Texas Missour i Idaho Mississippi Florida Geor gia K ansas Vir ginia Nor th Car olina Oklahoma Utah South Dakota Wyoming Nebrask a South Car olina T ennessee Wisconsin Expansion stat es Medicaid eligibilit y thresholds and co verage g aps by state by income fo r a famil y of 3 in 20 17 $40,320 200% po verty $23,1 90 100% pove rty MedicaidGapACA subsidy Health Insurance and the Health of Vulnerable People 267 these scourges are the very people whose access to care is most fragile. The remaining uninsured are disproportionately low income or near low income, nonwhite, the young, and adults with chronic conditions. Only children have nearly universal coverage. With Medicaid and SCHIP covering 40% of American children, their un - insured rate is about 5%. Insurance matters. It makes access pos - sible. In the U.S. today, 54% of the uninsured report no usual source of care, and 20% said they went without needed care due to cost. It reduces financial hardship. And perhaps, most importantly, the uninsured have much worse health outcomes. In 2002 the nation’s Institute of Medicine estimated the lack of insurance caused 18,000 deaths a year. In 2008, the Ur - ban Institute updated the methodology and es - timated that lack of insurance was responsible for 22,000 deaths (Dorn, 2008). After 3 years of ACA implementation, one in six low- income or near-low-income (under 200% poverty) adults is still uninsured and vulnerable (Barnett & Vornovitsky, 2016). In his very last speech, at the dedication of a new building for the U.S. Department of Health and Human Services (at the time it was the De - partment of Health, Education, and Welfare), former Vice President and Senator Hubert H.

Humphrey said, “The moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life, the sick; the needy and the handicapped.” Those words are now inscribed in the portal of the building as a reminder to each of us about what a society owes its citizens.

Discussion Questions 1. What does it mean to say original Medicaid is 50 different programs? 2. How is ACA Medicaid different than other Medicaid programs? 3. In what ways do financing mechanisms for the care of vulnerable populations contribute to a two-class care system? 4. Why does insurance matter? 5. Which group or groups of people still have inadequate insurance coverage? References Antonisse, L., Garfield, R., Rudowitz, R., & Artiga, S. (2017, February). The effects of Medicaid expansion under the ACA: Updated findings from a literature review. Issue Brief. Kaiser Family Foundation. Retrieved from http://files.kff.org/attachment/Issue-brief-The-Effects-of -Medicaid-Expansion-under-the-ACA-Findings-from -a-Literature-Review Auter, Z. (2017, July 10). U.S. uninsured rate rises to 11.7%: Q2 2017. Gallup Tracking Poll. Retrieved from http://www.gallup.com/poll/213665/uninsured-rate -rises.aspx Barnett. J. C., & Vornovitsky, M. S. (2016, September). Health insurance coverage in the United States, 2015. U.S. Census. Retrieved from https://www.census.gov /library/publications/2016/demo/p60-257.html Brown, L. D., & Sparer, M. S. (2003). Poor program’s progress: The unanticipated politics of Medicaid policy. Health Affairs, 22 (1), 31–44. Centers for Medicare & Medicaid Services. (2014 ). National health expenditures by type of service and source of funds, CY 1960–2012. Retrieved from http://www.cms. gov/Research-Statistics-Data-and-Systems/Statistics -Trends-and-Reports/NationalHealthExpendData /NationalHealthAccountsHistorical.html Congressional Budget Office (CBO). (2017, March 9). American Health Care Act Budget Reconciliation: Recommendations of the House Committees on Ways and Means and Energy and Commerce. Dorn, S. (2008). Uninsured and dying because of it: Updating the Institute of Medicine analysis on the impact of uninsurance on mortality. The Urban Institute. Retrieved from http://www.urban.org/sites/default/files/publication/31386/411588-Uninsured-and-Dying-Because-of-It.pdf Garfield, R., Rudowitz, R., Musumeci, M., & Damico, A. (2018). Implications of work requirements in Medicaid: What does the data say? Kaiser Family Foundation Issue Brief . Retrieved from https://www.kff.org/medicaid /issue-brief/implications-of-work-requirements-in -medicaid-what-does-the-data-say/ Goodman-Bacon, A. (2016, January 1). The long-run effects of childhood insurance coverage: Medicaid implementation, adult health, and labor market outcomes. NBER Working Paper Series, 22899. Retrieved from http://www.nber .org/papers/w22899.pdf Grabowski, D. C., Angelelli, J. J., & Mor, V. (2004). Medicaid payment and risk-adjusted nursing home quality measures. Health Affairs, 23 (5), 243–252. Retrieved from http:// content.healthaffairs.org/content/23/5/243.full 268 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations Hess, C., & Witgert, K. (2012, January 12). Toward meeting the needs of vulnerable populations: Issues for policymakers’ consideration in integrating a safety net into health care reform implementation. Washington, DC: National Academy for State Health Policy. Retrieved from http://www.nashp.org/sites/default/files/safety.net_.hcr_.pdf Jost, T. S., & Rosenbaum, S. (2012). The Supreme Court and the future of Medicaid. New England Journal of Medicine, 367 , 983–985. Retrieved from http://www .nejm.org/doi/full/10.1056/NEJMp1208219 Kaiser Commission on Medicaid and the Uninsured. (2013a). Medicaid enrollment, 2012 data snap shot. Issue Brief. Kaiser Family Foundation. Retrieved from http://kaiserfamilyfoundation.files.wordpress .com/2013/08/8050-06-medicaid-enrollment.pdf Kaiser Commission on Medicaid and the Uninsured. (2013b). The uninsured: A primer—Key facts about insurance on the eve of health reform. Retrieved from http://kaiserfamilyfoundation.files.wordpress.com/2013/10/7451-09-the-uninsured-a-primer-key -facts-about-health-insurance.pdf Kaiser Commission on Medicaid and the Uninsured. (2014). Federal and state share of Medicaid  spending: Timeframe 2012. Kaiser Family Foundation. Retrieved from http://kff.org/medicaid/state-indicator/federalstate -share-of-spending/ Kaiser Family Foundation. (n.d.) . Status of Medicaid expansion as of June 7, 2018 . Retrieved from https://www.kff.org /health-reform/state-indicator/state-activity-around-expanding-medicaid-under-the-affordable-care-act /?activeTab=map&currentTimeframe=0&selected Distributions=current-status-of-medicaid-expansion -decision&sortModel=%7B%22colId%22:%22Location %22,%22sort%22:%22asc%22%7D Kaiser Family Foundation. (2017, January 3). Current status of Medicaid expansion decisions . Retrieved from http://www.kff.org/health-reform/slide/current -status-of-the-medicaid-expansion-decision/ Kaiser Family Foundation. (2017, March 15). Where are states today? Medicaid and CHIP eligibility levels for children, pregnant women, and adults. Retrieved from http://www.kff.org/medicaid/fact-sheet/where -are-states-today-medicaid-and-chip/ Kaiser Family Foundation. (2017, June). Medicaid pocket p r i m e r. Retrieved from http://www.kff.org/medicaid /fact-sheet/medicaid-pocket-primer/ Kaiser Family Foundation. (2017, June 9). Medicaid spending by enrollment group. Retrieved from http://www.kff.org/medicaid /state-indicator/medicaid-spending-by-enrollment-group/ Kaiser Family Foundation. (2017, September 19) Key facts about the uninsured population. Retrieved from http://www.kff.org/uninsured/fact-sheet/key-facts -about-the-uninsured-population/ Kaiser Family Foundation . (2018). Medicaid income eligibility limits for adults as a percent of the federal poverty level. Retrieved from https://www.kff.org/health-reform /state-indicator/medicaid-income-eligibility-limits -for -adults-as-a-percent-of-the-federal-poverty-level /?currentTimeframe=0&sortModel=%7B%22colId %22:%22Location%22,%22sort%22:%22asc%22%7D Kaiser Family Foundation. (2018). Medicaid waiver tracker: Which states have approved and pending section 1115 Medicaid waivers . Retrieved from https://www.kff.org /medicaid/issue-brief/which-states-have-approved-and -pending-section-1115-medicaid-waivers/ Kitchenman, A. (2014, April 23). Profile: Princeton economist makes national mark with insights on health care. New Jersey Spotlight. Retrieved from http://www.njspotlight .com/stories/14/04/19/profile-princeton-economist -makes-national-mark-with-insights-on-healthcare -issues/ Long, M., Rae, M., Claxton, G., & Damico, A. (2016, March). Trends in employer-sponsored insurance offer and coverage rates: 1999–2014 . Kaiser Family Foundation. Retrieved from http://www.kff.org/private-insurance /issue-brief/trends-in-employer-sponsored-insurance -offer-and-coverage-rates-1999-2014/ Martin, A. B., Harman, M., Whittle, L., Catlin, A., & National Health Expenditure Team. (2014). National health spending in 2012: Rate of health spending growth remained low for the fourth consecutive year. Health Affairs, 33 (1), 67–77. Mazurenko, O., Balio, C. P., Agarwal, R., Carroll, A. E., & Menachemi, N. (2018). The effects of Medicaid expansion under the ACA: A systematic review. Health Affairs, 37(6), 944–950. Office of the Assistant Secretary for Planning and Evaluation. (2018). U.S. federal poverty guidelines used to determine financial eligibility for certain federal programs . Retrieved from https://aspe.hhs.gov/poverty-guidelines Paradise, J. (2017, March 23). Three findings about access to care and health outcomes in Medicaid. Data Note. Kaiser Family Foundation. Retrieved from http://www.kff.org /medicaid/issue-brief/data-note-three-findings-about -access-to-care-and-health-outcomes-in-medicaid/ Radley, D. C., McCarthy, D., & Hayes, S. L. (2017). Aiming higher: Results from The Commonwealth Fund scorecard on state health system performance. Retrieved from https://doi.org/10.15868/socialsector.26933 Riley, P., Berenson, J., & Carmody, C. (2012). How the Affordable Care Act supports a high-performance safety net. New York, NY: The Commonwealth Fund. Retrieved from http://www.commonwealthfund.org/Blog/2012 /Jan/Affordable-Care-Act-Safety-Net.aspx Rosenbaum, S. (2009). Medicaid and national health reform. New England Journal of Medicine, 361 , 2009–2012. Retrieved from http://www.nejm.org/doi/pdf/10.1056 /NEJMp0909449 Rosenbaum, S. (2011). Medicaid and access to health care—a proposal for continued inaction? New England Journal of Medicine, 365 , 102–104. Retrieved from http://dx.doi .org/10.1056/NEJMp1106046 269 References Sardell, A. (1988). The U.S. experiment in social medicine: The community health center program, 1965–1986 . Pittsburgh, PA: University of Pittsburgh Press. Schneider, E. C., Sarnak, D. O., Squires, D., Shah, A., & Doty, M. M. (2017). Mirror, mirror 2017: International comparison reflects flaws and opportunities for better U.S. health care. New York, NY: The Commonwealth Fund. Retrieved from http://www.commonwealthfund .org/interactives/2017/july/mirror-mirror/ Schoen, C. (2013, October 20). Personal interview.Schoen, C., Osborn, R., Squires, D., & Doty, M. (2013). Access, affordability, and insurance complexity are often worse in the United States compared to ten other countries. Health Affairs, 32 (12), 1–11. Schoen, C., Radley, D., Riley, P., Lippa, J., Berenson, J., Dermody, C., & Shih, A. (2013). Health care in the two Americas . New York, NY: The Commonwealth Fund. Schwamm, L. H. (2014). Telehealth: Seven strategies to successfully implement disruptive technology and transform health care. Health Affairs, 33 (2), 200–206. Sommers, B. D., & Epstein, A. M. (2011). Why states are so miffed about Medicaid—economics, politics, and the “woodwork effect.” New England Journal of Medicine, 363 , 2085–2087. Retrieved from http://www.nejm.org /doi/pdf/10.1056/NEJMp1104948 Sommers, B. D., Baicker, K., & Epstein, A. M. (2012, September 13). Mortality and access to care among adults after state Medicaid expansion. New England Journal of Medicine , 367 , 1025–1034. St. John, A. (2017, May 2). How the Affordable Care Act drove down personal bankruptcy. Consumer Reports. Retrieved from https://www.consumerreports.org/personal-bankruptcy /how-the-aca-drove-down-personal-bankruptcy/ Starr, P. (1982). The social transformation of American medicine . New York, NY: Basic Books. Vladeck, B. (2003). Where the action really is: Medicaid and the disabled. Health Affairs, 22 (1), 252–258. Zuckerman, S., McFeeters, J., Cunningham, P., & Nichols, L. (2004). Changes in Medicaid physician fees, 1998–2003: Implications for physician participation. Health Affairs, W4 , 374–384. Retrieved from http://content.healthaffairs .org/content/early/2004/06/23/hlthaff.w4.374.full .pdf +html?sid =570a9424-22cb-4a02-98bb-5cdd10682f02 270 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations CASE STUDY Alternative Managed Medicaid for Supplemental Security Income (SSI)–Eligible Population of Children with Special Needs in Washington, DC Veronica D. Feeg and Jennifer E. Mannin The Affordable Care Act (ACA) of 2010 enacted major reforms intended to expand access for all citizens to insurance, increase consumer protections, emphasize prevention and wellness, improve quality and system performance, expand the health workforce, and curb rising healthcare costs. It expanded Medicaid eligibility in some states and promoted a number of innovative payment and delivery system reforms—including patient-centered medical homes—for Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP) (Davis, Abrams, & Stremikis, 2011).

Along with the new emphasis on Medicaid expansions, and the growing attention to controlling cost and preserving quality that have been examined by policymakers, Medicaid in general and programs for children specifically brace for the impact of the changing regulatory environment and political bickering striving to seek common ground solutions. Policymakers recognize that the shift from Medicaid fee-for-service (FFS) plans to Medicaid managed care is likely to have the most profound impact on low-income children, since children and youth with disabilities and special healthcare needs (CYSHCN) represent 13% to 15% of the U.S. population (Palfrey et al., 2010), and this group must rely on a wide array of physicians and specialty care services (Fox & McManus, 1998).

Shift to Medicaid Managed Care Over the years of moving Medicaid beneficiaries into capitated managed care (MC) plans, policymakers were slower to require low-income CYSHCN to enroll in capitated MC plans due to the uncertainty of the financial incentives in controlling costs and the possibility of adverse effects. However, advantages have begun to emerge in the availability of care coordination services to assist families in navigating the healthcare system (Rosenbach & Young, 2000) and children with case managers in capitated systems appear to fare better than children in a FFS plan whose families must coordinate care without support (Mitchell & Gaskin, 2004). In the study by Mitchell and Gaskin (2004), the percentage of caregivers who reported problems of access was significantly higher for children in FFS Medicaid (18% to 29%) than it was for children enrolled in the capitated managed care plan. From these studies, the advantages appear to indicate that states who face the high cost of care for CYSHCN can manage their population costs through these MC capitated plans without impact on access. Proponents of this alternative to FFS for Medicaid SSI –eligible children in these times of tumultuous political debate around overhauling Medicaid are pointing to the differences in the value of coordinating care needs of children with complex problems (Mershon, 2016) and the discussions related to how the bills should align incentives, payment structure, and quality measures. Case managers serve families by linking them to necessary health services and community resources that facilitate access to needed services.

In a study by Roberto, Mitchell, and Gaskin (2005), children with special needs who receive Supplemental Security Income (SSI) due to disability who are enrolled in FFS Medicaid plans were significantly more likely to encounter an access problem. In another study in Washington DC by Mitchell and Gaskin (2005), children with birth defects, chronic conditions, and/or more limitations of daily living were more likely to enroll in FFS, but more likely to have a general unmet need than children enrolled in the capitated managed plan of Health Services for Children with Special Needs (HSCSN), the comparison group with a partially capitated MC plan. Caregivers whose children were enrolled in HSCSN were significantly less likely to report that their special needs child experienced any unmet need, an unmet need for medical equipment or supplies, an unmet need for prescription drugs, or an unmet need for dental services. They speculated that the case management services available under the plan account for the differences. Case managers are registered nurses, social workers, and other Case Study 271 CASE STUDIES health professionals with experience working with CYSHCN. They schedule appointments; arrange for transportation; serve as a link between primary care physicians, specialty providers, and the family; and coordinate services from the District of Columbia (DC) public schools.

Health Services for Children with Special Needs Health Services for Children with Special Needs (HSCSN) is a voluntary Medicaid managed care plan in Washington DC designed specifically for children receiving SSI. Since 1996, the DC has contracted with HSCSN, a nonprofit managed care organization, to administer the program, which differs from other state Medicaid MC plans that carve out certain services to the FFS sector.

HSCSN provides a comprehensive set of services to enrollees, including primary and specialty care, mental health treatment, and numerous other family support services through the entire Health Services for Children (HSC) system (Roberto, Mitchell, & Gaskin, 2005). With over 5,000 members today, HSCSN is reimbursed on a per-member, per-month (PM/PM) basis that funds the program to pay providers, the costs of case management and outreach, and other related expenses.

HSCSN and DC Medicaid have also established a reconciliation process at the end of each year that is negotiated to share a specified risk if the capitation payments set aside or related direct costs are widely discrepant. Although the plan remains at risk for its administrative expenses, the amount of risk it assumes for direct costs for services has been significantly reduced (Roberto, Mitchell, & Gaskin, 2005). The Health Services for Children (HSC) Health Care System is a unique health system that is committed to helping disadvantaged individuals suffering from disability and/or chronic illness to improve access to health and social services.

The system is comprised of HSCSN, HSC Home Care (which includes a residential care health service), HSC Foundation, HSC Pediatric Center, and most recently the National Youth Transition Center (NY TC). In addition to serving individuals and families in the Washington DC area, HSC participates in local, regional, and national projects aimed at improving the future of those with special needs. Beginning as a children’s home accommodating only six children, the Health Care System today has expanded exponentially to provide services to approximately 6,000 special needs children and families (HSC Health Care System, 2014). HSCSN provides care coordination for individuals who suffer from chronic disabilities and complex medical needs from birth to age 26.

Over the past 20 years, HSCSN’s delivery model has evolved in a changing environment, sustaining the commitment and focus on social determinants of health. Today this focus on the social and physical environments that promote good health is comprised of the following model components:

(1) a broad scope of Medicaid managed care that incorporates preventive, primary, acute, chronic and long-term care services; (2) family-centered care with a real commitment to care management; (3) continuity of care facilitated by 24-hour access to care coordination; (4) intensive outreach services, including respite care, transportation, and medically necessary home modifications; and (5) integration of health, mental health, and social support. The services are specified in the DC Department of Health Care Finance (see BOX 12-1 ). Individuals who are currently receiving Supplemental Security Income (SSI), are eligible to receive SSI, are in foster care, or qualify under the Katie Becket waiver may voluntarily choose HSCSN as an alternative to the traditional Medicaid fee-for-service (FFS) plan. This publicly funded managed care model of insurance for children effectively meets the needs of a particularly disadvantaged population in the District of Columbia while keeping costs in balance with services. The plan has pursued prudent growth and operational reinvention to ensure continuing benefit in an ever-changing environment and as a contributing partner with other organizations supporting the disability community (HSC Health Care System, 2014). Recruitment and retention of enrollees is a function of outreach. Each month the Department of Health Care Finance generates a list of those eligible for membership. Outreach sends letters and makes home visits to recruit and retain members. In addition to recruitment and retention, the HSCSN Outreach program offers an array of free services available to all community children and their caregivers. These programs include sports for the children, overnight camping weekends, and support groups for caregivers. One of these 272 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations: A Story of Misconceptions CASE STUDIES programs, the Male Caregivers Advocacy Support group (MCAS) is nationally recognized. Each enrollee is assigned a dedicated care manager who coordinates a wide array of services including, but not limited to, medical, dental, behavioral, occupational, social, and educational services. HSCSN offers all the Medicaid FFS benefits plus 16 additional coordinated benefits, including BOX 12-1 Services Offered to HSCSN Members 24-hour customer care service Appointment scheduling support Behavioral and development treatment services Dental care Dental and medically necessary orthodontia services Drug and alcohol treatment Doctor visits Early and periodic screening, diagnostic, and treatment (EPSDT ) incentive program Early intervention programs Emergency care Family planning Feeding programs Health call telephone link Health education services Healthy living center Home health care Home health nursing and personal care services Hospice care Hospital stays Immunizations Labor and delivery Laboratory and X-ray services Lead testing Mental health services Medically necessary home modifications Medical supplies and equipment Nutritional supplements Parent support program Personal care coordination for all members Physical, occupational, and speech therapy Prenatal care Prescription medicine Outreach services to families and communities Respite care School physicals Transportation to appointments Vision care and glasses Youth and adult wellness Youth athletic program Reproduced from Department of Health Care and Finance. (2014). Health Services for Children with Special Needs, Inc. Retrieved from https://dhcf .dc.gov/sites/default/files/dc/sites/dhcf/publication/attachments/HSCSN_FACT_SHEET.pdf Case Study 273 CASE STUDIES 168 hours of respite care every 6 months, skilled nursing care, crisis management, appointment scheduling, and transportation. TABLE 12-5 lists the expanded benefits offered by HSCSN as compared to those benefits offered by traditional Medicaid fee-for-service plans. It is this breadth of services and specialized care coordination that truly sets HSCSN apart from other plans. TABLE 12-5 Comparison of Medicaid FFS and HSCSN Benefits Medicaid FFS Benefits HSCSN Benefits: All Services Covered by Medicaid FFS Plus: Doctor visits Care coordination planning Immunizations Case management School physicals Home modification (limited benefit) Emergency care Respite care Hospital stays Telephone link for health calls Prescription medications Feeding programs Prenatal care Expanded durable medical equipment and supplies Labor and delivery Nutritional supplementation Vision care and glasses Home health nursing services Early intervention school programs Community-based mental health, behavioral, and developmental treatment services Family planning Outreach services to families and communities Transportation to appointments Appointment scheduling support Home health care Long-term care nursing and facility care Medical equipment and supplies Residential treatment Mental health services Skilled nursing Drug and alcohol treatment 274 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations: A Story of Misconceptions CASE STUDIES HSC Health Care System Under the Leadership of Tom Chapman According to Tom Chapman (2015), recent past president and chief executive officer (CEO) for the HSC Foundation and the HSC Health Care System, social determinants such as poverty, substandard housing, poor nutrition, and undesirable social and environmental conditions are strongly influential factors in many minority communities and may heavily contribute to poor outcomes. Researchers have reported that 15% to 20% of families living below the poverty level in most urban communities are one-third more likely to have a child with special needs in their family (Chapman, 2015), and there are documented disparities in childhood chronic illnesses for Hispanic and black children across many clinical conditions (Berry, Bloom, Foley, & Palfrey, 2010; Chapman & Tait, 2010).

As part of his tenure as president and CEO, Tom Chapman influenced the HSC Health Care System’s identity with the issues associated with transitions from institutional to home and community care, from avoidable treatment to prevention, and dependence to independence. As an extension to this, the HSC Foundation has organized many of its programs and those of its 50 partners into a systematic approach to youth transition, launching the National Youth Transitions Center in DC, a partnership with programs designed to provide expert youth transition services. Under Chapman’s leadership for more than a decade, the system has been transformed into the region’s premier special needs human services delivery system for the local community and for its national partners, as all parts of the HSC Health Care System contribute to the well-being of the disadvantaged member stakeholders. He believes that as the medical miracles of neonatal intensive care units (NICU) increase—those preemies who would not have survived in the past—so too are the challenges of coordinating their multiple needs, especially in low-income communities of families often ill prepared to manage complex responsibilities. His 20 years of leading the care coordination services of HSCSN have taught him that severely, chronically ill children can be 15 times more expensive than TANF ( Temporary Aid to Needy Families) beneficiaries. HSCSN members can cost up to $50,000 a year for their total care needs.

Despite the societal challenges these children represent, with social, psychological, and transition support they can achieve good outcomes and can thrive in communities. Without services, they will become future economic and social burdens as government dependents. He believes that governments must consider the big picture and long-term consequences as they plan future resource allocation—particularly as the number of children who rely on Medicaid continues to outpace the growth of coverage for those who need it (Chapman, 2015). Studies have identified disparities in services for children who are publicly insured versus children who are privately insured. The findings indicate that this disparity is due to pediatric specialty providers’ nonacceptance of public insurance (Bisgaier & Rhodes, 2011). Concomitantly, in many managed care plans that involve payment capitation, the neediest patients often suffer from a restriction of services due to the high cost of their care (Mitchell, Gaskin, & Kozma, 2008).

HSCSN addresses both of these concerns with a capitated system that is both fiscally and medically accountable to the DC government, focusing only on the care coordination of children with complex health and behavioral needs and continuously monitoring the services rendered, member satisfaction, and costs associated with care. As a result, they offer expanded benefits and services, cover more care, and have fewer unmet needs among their enrollees (Mitchell & Gaskin, 2004). As the threats to Medicaid funding grow and states seek fiscally responsible service delivery methods in a compassionate way, and as the managed care Medicaid model with its capitated formulas becomes more prominent in the coming years, it will continue to be important for all healthcare providers who care about their Courtesy of Thomas W. Chapman Case Study 275 CASE STUDIES patients and families to keep a close eye on quality.

Members of HSCSN are assessed routinely. Quality outcomes for the plan are measured and reported annually. HSCSN is accredited by the National Committee for Quality Assurance (NCQA), certified according to the Health Effectiveness Data and Information Set (HEDIS), and outperforms others in customer satisfaction according to the Consumer Assessment of Healthcare Providers and Systems (CAHPS). HSCSN is a model program serving a unique population of children with special needs and their families, and as such may serve as a national exemplar from which others may learn.

According to Tom Chapman: “We can make the case that HSCSN is a good steward—we are aware of our responsibility to ensure that we make the money go as far as it can. We maximize the benefit of service to people; as we look back at the numbers over 25 or 30 years, we basically have overseen a break- even close to a 1½% margin program. While it is not an insurance program geared towards being discriminatory about the services we offer, the utilization has come down over the years and I think we’re doing a better job. Access is up, satisfaction is high, and we’re doing a better job” (Personal interview with Chapman, 2017).

Case Study Questions 1. How does a fee for service (FFS) model differ from a managed care (MC) approach to publicly funded services from the patients’ perspective? Are these comparable in the private insurance market? 2. What aspects of service delivery are key considerations for states to finance and/or regulate healthcare systems in the Medicaid system? 3. Which vulnerable groups might be the most severely affected if Medicaid becomes state-only financed with block grants? How might state policymakers offer reductions to financing healthcare delivery through regulation or adjustments in eligibility, preserving their commitment to containing costs while preserving quality? How might the approaches differ for political groups? 4. Consider the following situation: Malcolm is a 2-year-old child who spent his first year of life in the hospital following his premature delivery and multiple complications. What are his long-term needs from a nursing or health provider point of view? What is the long-term financial impact on a publicly financed health system? Compare the positives and negatives of a managed care (MC) approach with a fee-for-service (FFS) approach related to social impact, clinical aspects of Malcolm’s care, and the public (Medicaid) or private (private insurance) financing ramifications. 5. What advantages are maximized with care coordination underlying healthcare delivery in a capitated system for providers? Families?

Payers? References Berry, J., Bloom, S., Foley, S., & Palfrey, J. (2010). Health inequity in children and youth with chronic health conditions. Pediatrics, 126 (6 S3), S111–S119. Bisgaier, J., & Rhodes, K. V. (2011) Auditing access to specialty care for children with public insurance. New England Journal of Medicine, 364 (24), 2324–2333. Chapman, T. W. (2017, March 28). Personal interview.Chapman, T. W. (2015, September 11). Guest commentary: Addressing the long-term needs of medical miracles. Modern Health Care, Crain Communications, Inc. Retrieved from http://www.modernhealthcare.com /article/20150911/NEWS/150919978 Chapman, T. W., & Tait, F. (2010). What will open the doors for children and youth with special health care needs from traditionally underserved communities? Pediatrics, 126 , S194–S196. Davis, K., Abrams, M., & Stremikis, K. (2011). How the Affordable Care Act will strengthen the nation’s primary care foundation. Journal of General Internal Medicine, 26 (10), 1201–1203. Fox, H., & McManus, M. (1998). Improving state Medicaid contracts and plan practices for children with special needs. Future of Children, 8 (2), 105–118. HSC Health Care System, Inc. (2014, October). A care coordination model for at-risk children with disabilities. Washington DC: Author. Mershon, E. (2016, July 11). Medicaid overhaul focused on children is pared back. Washington Health Policy Week in Review, New York, NY: The Commonwealth Fund. Retrieved from http://www.commonwealthfund.org/publications/newsletters /washington-health-policy-in-review/2016/jul/july-11-2016 /medicaid-overhaul-focused-on-children-is-pared-back Mitchell, J., & Gaskin, D. (2004) Do children receiving Supplemental Security income who are enrolled in Medicaid fare better under fee-for-service model or a comprehensive coordination model? Pediatrics, 114 (1), 196–204. Mitchell, J., & Gaskin, D. (2005). Factors affecting plan choice and unmet needs among Supplemental Security Income eligible children with disabilities. HSR: Health Services Research, 40 (5), Part 1, 1379–1399. 276 Chapter 12 Medicaid and the Financing of Care for Vulnerable Populations: A Story of Misconceptions CASE STUDIES Mitchell, J. M., Gaskin, D. J., & Kozma, C. (2008) Health supervision visits among SSI-eligible children in the D.C. Medicaid program: A comparison of enrollees in fee-for-service and partially capitated managed care. Inquiry, 45, 198–214. Palfrey, J. S., Huntington, N. L., Yusuf, A. Foley, S. M., Nary, D., & Jenkins, R. (2010, December). Viewing services for children and youth with special health care needs through a community lens. Pediatrics, 126 (S3), S107–S110. Roberto, P., Mitchell, J., & Gaskin, D. (2005). Plan choice and changes in access to care over time in SSI-eligible children with disabilities. Inquiry, 42 , 145–159. Rosenbach, M., & Young, C. (2000, June). Care coordination and Medicaid managed care: Emerging issues for states and managed care organizations. Princeton, NJ: Mathematica Policy Research, Inc. Case Study 277 CASE STUDIES © Anthony Krikorian/Shutterstock Innovation for the Delivery System of the Future:

Medical Homes, Accountable Care Organizations, and Bundled Payment Initiatives Dr. Brenda Helen Sheingold OVERVIEW Healthcare delivery in the United States (U.S.) is evolving away from a fragmented, traditional provider, fee-for-service model in favor of reform that aligns payment incentives to provider quality improvement achievements within delivery systems. The legislative statutes in the Affordable Care Act (ACA) have been foundational to this transformation by funding the development of new healthcare delivery models through research and innovative initiatives. Extensive research has been conducted to identify system improvements that replace fragmented care by linking provider payment and value-driven, coordinated, patient-centered delivery. Data generated from ACA-funded initiatives have demonstrated that significant savings can be realized when healthcare quality is a priority. 279 CHAPTER 13 ▸ Introduction This chapter presents rapidly evolving models of patient care delivery in the U.S. that are trans - forming consumer, patient, academic, and payer expectations in the new millennium. These new practice models are accountable care organiza - tions (ACOs), patient-centered medical homes (PCMHs), and bundled payment initiatives. Al - though variations of these models have existed for some time, passage of the Affordable Care Act (ACA) has accelerated their growth through extensive research and testing programs (Cen - ters for Medicare & Medicaid Services [CMS], 2016; Gilfillan, 2013). The origin of these models is similar be - cause they endeavor to respond to a wide range of healthcare system delivery failures. ACOs build on the health maintenance organization (HMO) concept that seeks to improve quality and reduce cost. The strategic difference is that HMOs shift financial risk to providers while ACOs must also attain quality benchmarks for reimbursement (Frakt & Mayes, 2012). The PCMH model is also foundational to the delivery of health care through the ACA. Historically, this model also focuses on improved quality that aligns with re - imbursement. The difference can be found in terms of its focus on health information technol - ogy (HIT) and evidence-based practice (EBP) (Arvantes, 2009; Healthcare Information and Management Systems Society & National Com - mittee for Quality Assurance [HIMSS/NCQA], 2010). Additionally, this model employs health - care teams that are focused or “centered” on the patient needs by offering such services as flexible, lengthened hours for care, proactive employee telephone calls, and patient email (Berenson, Devers, & Burton, 2011). Bundled payment initiatives require healthcare organiza - tions to agree to a fixed payment arrangement to cover all costs associated with an episode of care (Baseman, Boccoti, Moon, Griffin, & Dutta, 2016). Payments for healthcare expenditures are provided either prospectively, beginning when a patient requires acute care hospitalization and includes payment for all costs associated with the hospitalization, or retrospectively (CMS, 2016). Retrospective bundled payment also begins with hospitalization in an acute care facility, but includes financial benchmarks or targets for coverage of post-acute care and costs associated with services such as home health or rehabilitation (CMS, 2016). The overar - ching goals, such as continuous care, perfor - mance-based payment, patient-centered care, and cost savings, are shared by the new health - care delivery models and serve as the core of evolving modern healthcare delivery systems (CMS, 2017b; Meyer, 2012).

▸ The Innovation Center:

Promoting Care Delivery Models for the Future The Centers for Medicare & Medicaid Inno - vation Center (CMMI) was created by the U.S.

Congress to test experimental payment and OBJECTIVES ■ Identify four healthcare delivery models that support quality-based payment and reimbursement. ■ Identify how alternative payment models (APMs) encourage provider–payer collaboration and provider performance that meets benchmarks regarding quality of care outcomes. ■ Describe four types of bundled payment healthcare delivery models. ■ Describe the role of the Learning and Action Network (LAN) and how it supports the transformation of healthcare delivery in the United States. 280 Chapter 13 Innovation for the Delivery System of the Future quality care delivery models that also con - tain costs (CMS, 2014a). New initiatives were funded through ACA statutes that expanded services to recipients of Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP). The statute provides $10 billion in di - rect funding in fiscal years 2011 through 2019 to enable organizations to partner with the In - novation Center for innovation models testing (CMS, 2014b). Prior to the passage of ACA, CMS-funded initiatives of this type were referred to a “demonstration projects.” Since the Innova - tion Center has been established, the branding of ACO and PCMH initiatives is increasingly re - ferred to as “models” or “innovations” and the term demonstration project is being used less fre - quently (Berenson & Cafarella, 2012). TABLE 13-1 displays examples of the seven major types of ACO, PCMH, and bundled payment models funded by the Innovation Center. These mod - els are all efforts to address organizational and financial barriers that have prevented the pro - vision of quality patient care.

▸ Rationale for New Models The U.S. healthcare system is historically the most expensive in the world, spending more per capita on health care than any other coun - try (Kaiser Family Foundation, 2011). Recent estimates are that national health expenditures per capita in the U.S. were $8,953.00 in 2012, accounting for 17.9% of the gross domestic product (GDP) (Keehan et  al., 2012; The World Bank, 2013). Traditionally these estimates have been much higher in the U.S. than in all other nations (Squires, 2012). Despite the higher spending, the U.S. ranks poorly in international comparisons of health system performance (Davis, Schoen, & Stremikis, 2010). In addition, a study released by the National Research Council and the In - stitute of Medicine in 2013 demonstrated that out of the top 17 Organisation for Economic Co-Operation and Development (OECD) coun - tries, the U.S. ranked last, due in large part to repetitious patterns of poor health throughout the entire lifespan (Rubenstein, 2013; World Health Organization, 2000). Determinants of poor health are based upon a variety of factors that include the incidence of chronic disease, maternal and infant mortality, likelihood of death by violence, smoking, food security, and access to dental and medical care (United Health Foundation, 2013). The need to coordinate healthcare delivery in the U.S. is a response to the overall poor health rankings and high costs. While coordinated care has been on the public agenda for a long time, it has not been a priority of those setting policy in Wash - ington (Hoffman, 2003). It became a national priority when the Affordable Care Act (ACA) was passed by the U.S. Congress and signed into law by President Barack Obama in 2010. The new ACA law supports a comprehen - sive review of healthcare delivery best prac - tices in the U.S., bringing ACO, PCMH, and bundled payment models to the forefront of funded research and payment (Baseman et.al., 2016; Gates, Rudowitz, & Guyer, 2014; U.S.

Department of Health and Human Services [USDHHS], 2013a). Payment that is built around the quality and outcome of services delivered, rather than volume of services is referred to as avalue-based purchasing (VBP) program and is the goal for U.S. healthcare delivery in the future (USDHHS, 2016).

▸ The Four Major Healthcare Service Delivery Models ACO Model An accountable care organization (ACO), as de - fined by the ACA, refers to a group of providers and suppliers that coordinate services to improve patient care. More specifically, the American Academy of Family Physicians (AAFP) defines an ACO as “a group of health care providers who agree to take on a shared responsibility for the The Four Major Healthcare Service Delivery Models 281 TABLE 13-1 CMS Innovation Center ACO, PCMH, and Bundled Payment Projects Business or Experimental Model Aim Accountable Care Similar care models are designed to incentivize healthcare providers to become accountable for a patient population and to invest in infrastructure and redesigned care processes that provide for coordinated care, and high-quality and efficient service delivery. Episode-Based Payment Initiatives Healthcare providers are held accountable for the cost and quality of care beneficiaries receive during an episode of care, which usually begins with a triggering healthcare event (such as a hospitalization or chemotherapy administration) and extends for a limited period of time thereafter. Primary Care Transformation Strengthening and increasing access to primary care is critical to promoting health and reducing overall healthcare costs. Advanced primary care practices—also called “medical homes”—utilize a team-based approach, while emphasizing prevention, health information technology, care coordination, and shared decision making among patients and their providers. Initiatives Focused on the Medicaid and CHIP Population These are administered by the states but are jointly funded by the federal government and states. Initiatives in this category are administered by participating states. Initiatives Focused on Medicare–Medicaid Enrollees Individuals enrolled in both Medicare and Medicaid (the “dual eligibles”) account for a disproportionate share of the programs’ expenditures. A fully integrated, person- centered system of care that ensures that all their needs are met could better serve this population in a high-quality, cost-effective manner. Initiatives to Accelerate the Development and Testing of New Payment and Service Delivery Models By partnering with local and regional stakeholders, CMS can help accelerate the testing of models today that may be the next breakthrough tomorrow. Initiatives to Speed the Adoption of Best Practices The Innovation Center is partnering with a broad range of healthcare providers, federal agencies, professional societies, and other experts and stakeholders to test new models for disseminating evidence-based best practices and significantly increasing the speed of adoption. Source: Reproduced from Centers for Medicare & Medicaid Services Innovation Center (CMS). (2017b). Innovation models. Retrieved from: https://innovation.cms.gov/initiatives/index .html#views=models 282 Chapter 13 Innovation for the Delivery System of the Future care of a defined population of patients while assuring active management of both the qual - ity and cost of that care” (Bobbitt, 2011). CMS currently provides a variety of ACO financial models, intended to reduce costs and improve the quality and outcomes of care (CMS, 2017a). A key tool for ACOs to achieve these objectives is to coordinate care by sharing medical infor - mation and data primarily through an electronic health record (EMR) to reduce redundancy and help control costs (CMS, 2013). Five types of ACOs are defined and summarized with ex - amples in TABLE 13-2. This table illustrates that ACOs are represented by many organizational paradigms and structures. All are an attempt to align financial and practice incentives to insure improved quality and outcomes of patient care. ACOs leverage a wide variety of organiza - tions or integrated care delivery systems and may elect to include a PCMH, which is also known as a primary care medical home and is charac - terized by the presence of five critical elements or core functions. The Agency for Healthcare Research and Quality (AHRQ) has identified these core functions as follows (AHRQ, 2013): 1. Provides comprehensive care: Orga - nizes care by marshaling a diverse subset of specialists that represent many different professions. Some examples are pharmacists, social workers, nutritionists, physical therapists, occupational therapists, and dentists. This team is usually led by a physician or nurse practitioner. 2. Provides patient-centered care: Deliv - ers care that focuses on establishing a relationship with each patient and their family. It recognizes and considers the cultural, ethnic, and social differences of every patient and incorporates these values into the care that is offered. 3. Provides coordinated care: Supervises key transitions that occur at decisive junctures or care transfer, such as being discharged from the hospital to home, or the introduction of palliative care services. Good communication is a requirement of medical homes to achieve effective care coordination. 4. Provides accessible services: Offers appointments that are convenient and flexible to suit patient and family preferences. Also offers 24-hour care, either by telephone or via electronic communication, to reduce overall wait time for patients and families. 5. Provides safe care and quality moni - toring: Practices evidence-based care that is routinely analyzed to meet standard benchmarks for quality and safety. Values patient engagement and patient satisfaction. Publicly shares safety data and quality improvement activities. PCMH Model Patient-centered medical home (PCMH) is a model of care that facilitates the coordination of primary care in a cooperative setting of provid - ers that serve in the interest of the patient and meet most of their healthcare needs (Baseman et  al., 2016, HIMSS/NCQA, 2013). The model was originally established in 1967 to provide or - ganized care for pediatric patients, and has since evolved in scope to encompass an extensive range of practice that includes families, clinical special - ties, and chronic disease management (American Academy of Pediatrics [AAP], 2013). The orig - inal PCMH concept improved access to health care and has progressed due to technological advances. Comprehensive care could only be pro - vided by HMOs that owned their own hospitals and therefore controlled the transfer of patients or by very tight coordination between community health centers (CHCs) and hospitals. Comput - erization made care coordination possible be - tween providers in diverse locations and helped facilitate the growth of the managed care indus - try. Combined with the drive to a market-driven health system, organizations have endeavored to control market share, control costs, and ad - dress issues of quality through care coordination. The Four Major Healthcare Service Delivery Models 283 The AHRQ has identified two primary ap - proaches to care coordination that are summa - rized in TABLE 13-3. The ACO and PCMH care delivery models align with the quality improvement and reim - bursement incentives required by ACA through VBP (USDHHS, 2016). The Commonwealth Fund has formulated 10 recommendations to support the transformation and alignment of innovative care delivery models and payment: ■ Make care coordination a high priority. ■ Identify patients in greatest need of pro - active, coordinated care. ■ Train more primary care physicians and geriatricians. ■ Facilitate communication between provi- ders—for example, through clinical record integration. ■ Engage patients in decisions about their care. ■ Provide better support for caregivers. TABLE 13-2 Snapshot of Accountable Care Organizations in the United States Type Characteristics Examples Integrated delivery system ■ Own hospitals. ■ Sponsor health plans.

■ Salary-based specialty practices. ■ Provide extensive population health care. Eastern Maine Healthcare System, Kaiser Permanente, Geisinger Health System, Henry Ford Health System, Intermountain Health System Multi-specialty group practice ■ Strong affiliation with a hospital (might own one). ■ Contract with multiple health plans. ■ Physician-led coordinated care. Mayo Clinics (Minnesota, Florida, and Arizona), Cleveland Clinic, Virginia Mason Clinic, Billings Clinic Physician-hospital organizations ■ Subset of a hospital staff. ■ Negotiate with health plans. ■ Cost-effective care coordination. Advocate Health System, Middlesex Hospital, Detroit Medical Center Independent practice associations ■ Individual physician practices contract with health plans. ■ Care coordination varies. ■ Exchange of protected health information (PHI) varies. Hill Physicians Group, HealthCare Partners, Monarch Healthcare: A Medical Group, Inc. Virtual physician organizations ■ Independent small physician practices. ■ Usually located in rural areas. ■ Led by a single physician, foundation, or Medicaid agency. Community Care of North Carolina, Grand Junction Colorado, North Dakota Rural Cooperative Network, Humboldt County California Sources: Data from Centers for Medicare & Medicaid Services (CMS). (2017a). Accountable care organizations: General information. Innovation Center; Shortell, S., Gillies, R., & Wu, F. (2010). United States innovations in healthcare delivery. Public Health Reviews, 32 (1), 190–212. 284 Chapter 13 Innovation for the Delivery System of the Future ■ Redesign funding mechanisms to meet patients’ needs. ■ Integrate health and social services with physical and mental health care. ■ Engage clinicians in change and train and support clinical leaders. ■ Learn from experience and scale up successful projects (The Commonwealth Fund, 2017). Bundled Payment Model An early example of a bundled payment model that surfaced in 1988 was reimbursement for cor - onary artery bypass grafting (CABG) surgery, which incentivized coordinated care by align - ing it with a fixed fee-for-service (Muhlestein, Burton, & Winfield, 2017). Bundled payments for a wide variety of procedures and diagnoses are initiated by CMMI as part of the ACA man - dates to accelerate the inclusion of best practices into healthcare delivery (CMS, 2017b). Bundled payments are also known as “episode-of-care” payments and provide a single amount of reimbursement that includes all fees such as hospitalization charges, physician charges, physical therapy, and respiratory ther - apy, and all providers of care receive a portion of the reimbursement (Baseman et al., 2016). CCMI has developed four models of bundled payment or episodes of care that each reduce duplicative services focus on quality health - care differently (CMS, 2017b). See TABLE 13-4 for a brief description how the four different bundled payment care improvement (BPCI) models meet VBP challenges based upon the scope of service, organizational type, and pay - ment type (Baseman et al., 2016).

Other Payment and Delivery Innovations There are several key care delivery initiatives and alternative payment models (APM) that are active, but don’t fit into an ACO, PCMH, or bundled payment category. The Congressional TABLE 13-3 Approaches to Care Coordination Approach Examples of Activities Broad care coordination ■ Teamwork ■ Care management ■ Medication management ■ Health information technology ■ Patient-centered medical home Specific care coordination ■ Establishing accountability and agreeing on responsibility ■ Communicating/sharing knowledge ■ Helping with transitions of care ■ Assessing patient needs and goals ■ Creating a proactive care plan ■ Monitoring and follow-up, including responding to changes in patients’ needs ■ Supporting patients’ self-management goals ■ Linking to community resources ■ Working to align resources with patient and population needs Source: Modified, with permission, from Agency for Healthcare Research and Quality. (2017). Care coordination . Retrieved from https://www.ahrq.gov /professionals/prevention-chronic-care/improve/coordination/index.html The Four Major Healthcare Service Delivery Models 285 Budget Office (CBO) testified that the com - bined savings from all Innovation Center ac - tivities and initiatives, “would reduce federal spending by $34 billion through 2026” (CMS, 2016). The overarching goal is to transform care by developing and learning from evidence that demonstrates quality improvement reduces healthcare costs. One significant initiative to achieve this goal is the Health Care Payment Learning and Ac - tion Network (LAN) established by the CMS in 2015. The LAN is a collaborative of public, pri - vate, and nonprofit affiliates that collaborate to increase the adoption of ACOs, PCMHs, bun - dled payments, and other APMs to support the momentum of CMS quality improvement mea - sures across the United States (CMS, 2016). Another significant initiative is the Medi - care Access and CHIP Reauthorization Act of 2015 (MACRA), which explores creative ways for CMS to reimburse physicians that participate in APMs (USDHHS, 2017). MACRA focuses on incentives for practitioners to deliver quality health care through HIT, greater care coordina - tion, and population health (USDHHS, 2017).

▸ Conclusion As the implementation of healthcare reform continues to evolve, new healthcare delivery models will continue to be evaluated by gov - ernment and private entities to assure effective VBP (CMS, 2016). TABLE 13-4 CMS Innovation Center BPCI Models BCPI Model Description Model #1 Retroactive Acute Care, Hospital Stay Only (concluded 2016) Defined as the inpatient stay in the acute care hospital. Medicare paid the hospital a discounted amount based on the payment rates established under the Inpatient Prospective Payment System used in the original Medicare program. Medicare paid physicians separately for their services under the Medicare Physician Fee Schedule. Model #2 Retrospective Acute and Post-Acute Care This payment model continues to make fee-for-service (FFS) payments to providers and suppliers furnishing services. The total expenditures per episode are reconciled afterward against a bundled payment amount (the target price) determined by CMS. A payment is made by Medicare reflecting the aggregate performance compared to the target price. Model #3 Retrospective Post- Acute Care Only Retrospective bundled payment occurs by reconciling actual expenditures against a target price for an episode of care. Model #4 Prospective Acute Care, Hospital Stay Only A prospective determined bundled payment to the hospital that encompasses all services furnished by the hospital, physicians, and other practitioners during the episode of care, which lasts the entire inpatient stay.

Physicians and other practitioners submit “no-pay” claims to Medicare and are paid by the hospital out of the bundled payment. Related readmissions for 30 days after hospital discharge are included in the bundled payment amount. Sources: Data from Centers for Medicare & Medicaid Services. (2017b). Innovation models. Innovation Center . Retrieved from https://innovation.cms.gov/initiatives /index.html#views=models ; Baseman, S., Boccoti, C., Moon, M., Griffin, S., & Dutta, T. (2016). Payment and delivery system reform in Medicare: A primer on medical homes, accountable care organizations, and bundled payments. Kaiser Family Foundation. 286 Chapter 13 Innovation for the Delivery System of the Future This is an advantage for consumers of health care, care providers, and key stakeholders at all levels, and will have a lasting effect for the new millennium.

References American Academy of Pediatrics (AAP). (2013). National Center for Medical Home Implementation website. Retrieved from http://www.medicalhomeinfo.org/ Agency for Healthcare Research and Quality (AHRQ). (2013). Defining the PCMH. Patient-Centered Medical Home Resource Center (PCHM). Retrieved from http://www.pcmh.ahrq.gov/portal/server.pt/community /pcmh__home/1483/pcmh_defining_the_pcmh_v2 Agency for Healthcare Research and Quality (AHRQ). (2017). Care coordination. Retrieved from https://www.ahrq .gov/professionals/prevention-chronic-care/improve /coordination/index.html Arvantes, J. (2009). PCMH likely to form basis of federal health care reform. American Academy of Family Physicians (AAFP). Retrieved from http://www.aafp.org/news-now /pcmh/20090217pcmhfedreform.html Baseman, S., Boccoti, C., Moon, M., Griffin, S., & Dutta, T. (2016). Payment and delivery system reform in Medicare: A primer on medical homes, accountable care organizations, and bundled payments. Kaiser Family Foundation. Retrieved from https://www.kff.org/medicare/report /payment-and-delivery-system-reform-in-medicare/ Berenson, B. A., & Cafarella, N. (2012, February). The Center for Medicare & Medicaid Innovation: Activity on many fronts. Timely analysis of immediate health policy issues. Urban Institute. Retrieved from https://www.giaging .org/documents/73921.5643ctrformedicare.2012.feb .fullrpt.pdf Berenson, R., Devers, K., & Burton, R. (2011). Will the patient-centered medical home transform the delivery of health care? Robert Woods Johnson Foundation. Retrieved from http://www.rwjf.org/content/dam/farm /reports/reports/2011/rwjf70764 Bobbit, J. (2011). What family physicians need to know about ACOs. Family Practice Management, 18 (5), 17–22. Centers for Medicare & Medicaid Services (CMS). (2013). Program news and announcements. Retrieved from https://www.cms.gov/Medicare/Medicare-Fee-for -Service-Payment/sharedsavingsprogram/Downloads /MSSP-ACOs-List.pdf Centers for Medicare & Medicaid Services (CMS). (2014a). Accountable care organiza tions. Retrieved from http:// www.medicare.gov/manage-your-health/coordinating -your-care/accountable-care-organizations.html Centers for Medicare & Medicaid Services (CMS). (2014b). Where innovation is happen ing. Innovation Center (CMMI). Retrieved from http://innovation.cms.gov /initiatives/map/index.html Centers for Medicare & Medicaid Services (CMS). (2016, December). Center for Medicare and Medicare Innovations Report to Congress. Retrieved from https://innovation .cms.gov/Files/reports/rtc-2016.pdf Centers for Medicare & Medicaid Services (CMS). (2017a). Accountable care organizations: General information. Innovation Center. Retrieved from https://innovation .cms.gov/initiatives/ACO/ Centers for Medicare & Medicaid Services (CMS). (2017b). Innovation models. Innovation Center. Retrieved from https:// innovation.cms.gov/initiatives/index.html#views =models Davis, K., Schoen, C., & Stremikis, K. (2010). Mirror, mirror on the wall: How the performance of the U.S. health care system compares internationally. New York, NY: The Commonwealth Fund. No. 1400. Retrieved from http://www.commonwealthfund.org/publications /fund-reports/2014/jun/mirror-mirror Frakt, A., & Mayes, R. (2012). Beyond capitation: How new payment experiments seek to find the “sweet spot” in amount of risk providers and payer bear. Health Affairs, 31(9), 1951–1958. Gates, A., Rudowitz, R., & Guyer, J. (2014). An overview of delivery system reform incentive payment (DS RP) waivers. Kaiser Family Foundation Commission on Medicaid and the Uninsured. Retrieved from https://www.kff.org /medicaid/issue-brief/an-overview-of-delivery-system -reform-incentive-payment-waivers/ Gilfillan, R. J. (2013, March 20). Reforming the Delivery System: The Center for Medicare and Medicaid Innovation . Congressional Testimony Before the U.S. Senate Committee on Finance. Retrieved from https://www.finance.senate .gov/hearings/reforming-the-delivery-system-the-center -for-medicare-and-medicaid-innovation Healthcare Information and Management Systems Society, National Committee for Quality Assurance (HIMSS /NCQA). (2010). Patient-centered medical home fact sheet . Retrieved from http://www.ncqa.org/Portals/0 /Public%20Policy/HIMSS_NCQA_PCMH_Factsheet.pdf Hoffman, B. (2003). Health care reform and social movements in the United States. American Journal of Public Health, 93(1), 75–85. Kaiser Family Foundation. (2011). Snapshots: Health care spending in the United States & selected OECD countries. Retrieved from http://kff.org/health-costs/issue-brief /snapshots-health-care-spending-in-the-united-states -selected-oecd-countries/ Keehan, S., Cuckler, G., Sisko, A., Madison, A., Smith, S., Lizonitz, J., Poisal, J., & Wolfe, C. (2012). National health expenditure projections: Modest annual growth until coverage expands and economic growth accelerates. Health Affairs, 31 (7), 1600–1612. Meyer, H. (2012). Many accountable care organizations are now up and running, if not off to the races. Health Affairs , 31(11), 2363–2367. Muhlestein, D., Burton, N., & Winfield, L. (2017, February 3). The changing payment landscape of current CMS 287 References payment models foreshadows future plans. Health Affairs Blog . Retrieved from http://healthaffairs.org /blog/2017/02/03/the-changing-payment-landscape-of -current-cms-payment-models-foreshadows-future-plans/ Rubenstein, G. (2013, January 10). New health rankings: Of 17 nations, U.S. is dead last. The Atlantic . Retrieved from http://www.theatlantic.com/health/archive/2013/01 /new-health-rankings-of-17-nations-us-is-dead-last /267045/ Shortell, S., Gillies, R., & Wu, F. (2010). United States innovations in healthcare delivery. Public Health Reviews , 32(1), 190–212. Squires, D. (2012). Explaining high health care spending in the United States: An international comparison of supply, utilization, prices, and quality. The Commonwealth Fund. No. 1595. Vol. 10. Retrieved from http://www .commonwealthfund.org/publications/issue-briefs/2012 /may/high-health-care-spending The Commonwealth Fund. (2017). The Commonwealth Fund designing a high-performing health care system for patients with complex needs: Ten recommendations for policymakers. Retrieved from http://www.commonwealthfund.org /publications/fund-reports/2017/aug/ten-recommendations The World Bank. (2013). Health expenditure per capita (current US$). Retrieved from http://data.worldbank. org/indicator/SH.XPD.PCAP United Health Foundation. (2013). America’s health rankings. Retrieved from http://www.americashealthrankings .org/About U.S. Department of Health and Human Services. (2013). Key features of the Affordable Care Act. Retrieved from http://www.hhs.gov/healthcare/facts/timeline/index.html U.S. Department of Health and Human Services. (2016). Report to Congress: Social risk factors and performance under Medicare’s value-based purchasing programs . Office of the Assistant Secretary for Planning and Evaluation (ASPE). Retrieved from https://aspe.hhs .gov/pdf-report/report-congress-social-risk-factors -and-performance-under-medicares-value-based -purchasing-programs U.S. Department of Health and Human Services. (2017, March). Physician-Focused Payment Model Technical Advisory Committee. Office of the Assistant Secretary for Planning and Evaluation (ASPE). Retrieved from https://aspe.hhs.gov/ptac-physician-focused-payment -model-technical-advisory-committee World Health Organization (WHO). (2000). The World Health Report 2000—Health systems: Improving per formance . Retrieved from http://www.who.int/whr/2000/en/ 288 Chapter 13 Innovation for the Delivery System of the Future 289 © Anthony Krikorian/Shutterstock SECTION 5 Health Care and Provider and Care Delivery CHAPTER 14 Hospitals: Consolidation and Compression CHAPTER 15 Enhanced Primary Care Roles for Nurses and Other Professionals CHAPTER 16 Physicians: It Is Increasingly about the Team CHAPTER 17 Health Information Technology and the Intersection of Health Policy CHAPTER 18 Political Power of Nurses: Harnessing Our Values and Voices © Anthony Krikorian/Shutterstock Hospitals: Consolidation and Compression Barbara Caress and Nancy Aries OVERVIEW This chapter discusses the critical role of hospitals in the delivery of health care. Hospitals historically have been at the center of the healthcare system, reliably accounting for more than one-third of personal healthcare expenditures. For the most part, they have functioned independently given their history, the context of the communities where they were located, and the financing system that supported them. The role of hospitals in the medical care system is changing because of the evolving nature of healthcare delivery. Most hospitals are no longer single, independent operations. Rather, each is part of larger system, which usually includes physicians, surgi-centers, community-based urgent care, laboratory and radiology services, postacute providers, as well as other hospitals. While still dominant as the provider of tertiary care, hospitals are becoming integrated into a model of care that is population based with payments, in part, dependent of their willingness and capacity to manage comprehensive and integrated care as a way to improve the community’s health.

OBJECTIVES ■ Understand the transformation of hospitals from social welfare providers to independent acute care facilities to part of care systems. ■ Identify how hospitals became the hub of the healthcare delivery system and competing pressures for change. ■ Recognize how external pressures are changing the nature of hospital services. ■ Delineate the strategies being used by hospitals to ensure their centrality to the provision of services as well as the quality of care. ■ Assess the impact of the Affordable Care Act on the role of hospitals. 291 CHAPTER 14 ▸ Hospitals’ Role within the Delivery System Twentieth-century hospitals provide an excel - lent example of the limits of using competitive markets to provide health services. Superficially, hospitals look like the competitive suppliers of salable services that economics textbooks hail as the necessary condition for market-driven efficiency. The term “market” means a situa - tion in which the sellers and buyers of a product come together voluntarily to exchange money for goods at a price that is set by the competi - tion among all the sellers to attract willing and able buyers of the service in question. According to the theory, the pressure of competition will drive sellers to provide the best possible care at the lowest possible price. Because U.S. hospitals were not part of a singular healthcare system, like the hospitals in Canada or other industrial nations, their cir - cumstances suggested that they could operate as efficient textbook competitors in search of pay - ing customers. The difficulty with this idealized market-based and regulation-free approach to hospital care is that hospitals acting in their own best interests do not necessarily serve the needs of the population where they are located. The dilemma is most obvious for hospitals serving financially vulnerable populations, i.e., popu - lations that cannot afford to pay the full costs of the care they receive and do not have insur - ance or enough insurance to cover the differ - ence. Such hospitals are unstable financially, as they must rely upon nonmarket sources of funding and are frequently not attractive part - ners for most hospital systems. Not surprisingly in an era of hospital consolidation, this has re - sulted in many hospital closures since the 1990s (Cutler, 2009). Hospital competition is rarely a rational - izing force. Recognizing the challenge of mak - ing essential services available to persons who cannot afford to pay, public policymakers have adopted other methods to push for a more effec - tive and efficient system. The basic instruments employed in recent years are payment incentives for consolidation and integration. With the pas - sage of the Affordable Care Act (ACA), there is now an enhanced emphasis on improving the complementarity between providers who par - ticipate in integrated networks, which provide a continuum of care from wellness to outpatient and inpatient care, to nursing home care and hos - pice. It is believed that there is the potential for hospitals to become more fully integrated into optimized systems of care by reorienting the en - tire system away from one that rewards volume to one that creates incentives for improving the quality of care and controlling cost across spe - cific populations. In this chapter, the develop - ment of the hospital sector will be explained, as will the current state of the healthcare indus - try. The following sections will explicate how the politics of healthcare reform are impacting hospitals and the industry’s response.

▸ Hospitals in a Historic Context The origin of hospitals is more tied to the pro - vision of social services than medical services.

Before the Civil War, there were just a handful of hospitals, including Philadelphia General, Massachusetts General, and New York Hospi - tal. These were often founded at the urging of doctors as workshops to study and train physi - cians. They were endowed by city elites. They were supported by the public because they were places that cared for persons who had no family to care for them (Starr, 1982). The number of hospitals increased dramatically after the Civil War, as cities grew in numbers and size (Rosner, 1982). Given the social stresses due to immi - gration, industrialization, and urbanization, hospitals were critical to urban stability. New hospitals were built to respond to the defined needs of specific communities. These hospitals were a principal tool whereby community elites organized assistance to the poor who were dis - located from their religious and ethnic groups. 292 Chapter 14 Hospitals: Consolidation and Compression The names of the hospitals told of their affilia - tion: Mount Sinai, Lutheran, Swedish, St. Luke’s, French, Methodist, and St. Vincent’s. The goal was not just medical cure. The goal was to pro - vide assistance in whatever form it was needed (Starr, 1982). The modern U.S. hospital industry was born between the 1860s and the 1920s as these hos - pitals underwent a transformation from social welfare institutions to institutions that provide acute medical care. Rather than serving the ge - neric needs of the community, the mission of the hospital became one of curing the acute problems of the sick. The change in purpose was related to the rise of the biomedical sciences. For the first time, physicians could provide services that positively impacted the health of their patients.

Patients who could benefit from medical inter - vention began to be treated in hospitals, whereas chronic or social problems, such as alcoholism or old age, that were not responsive to medical intervention were moved into the realm of social services. Another factor impacting the transi - tion was that medical services could no longer be provided in a patient’s home. They required a centralized location where sterile conditions could be assured and where equipment such as X-ray machines and pathology laboratories could be located. The growing complexity of medical care called for more complex staffing functions and organizational structures. By 1920, for ex - ample, the transformation of the hospital was achieved in Philadelphia when three distinct in - stitutions formed out of Philadelphia General Hospital: an acute care hospital, an asylum, and an almshouse (Rosenberg, 1982). Beyond the growth of the hospital, two other transformations occurred. First, the hos - pital changed from an institution operated as charity into one run as a business. Hospitals were becoming costlier ventures to operate be - cause of changes resulting from scientific ad - vances. Their former business model that relied on philanthropy was no longer tenable. Hospi - tals needed new sources of revenue. They be - gan charging for services and opening their doors to private practitioners who had access to potentially paying middle-class patients. Once opened and dependent on private physicians to supply the patients, the second transforma - tion occurred. Control passed from the boards of trustees, drawn from among elite members of the community, to physicians who controlled admissions (the most important source of reve - nue) and, ultimately, mission (Rosner, 1982). As the hospitals grew in number and size, the role and influence of physicians also grew. One or - ganized agent of the physician community, the American College of Surgeons, even sought to standardize hospital services as a way to ensure quality. The College surveyed all hospitals to de - termine whether: (1) physicians were licensed, (2) the medical staff met monthly, (3) there were accurate patient records, and (4) there were di - agnostic and therapeutic facilities under com - petent supervision (Stevens, 1989). By the late 1930s, the hospital had become the hub of the healthcare delivery system. It was the locus of both patient care and medical train - ing. Centralizing care in increasingly complex institutions was the most important manifesta - tion of the transformation of U.S. health care in the 20th century. Hospital care defined medi - cal care as the treatment of injury and disease, not prevention and comfort, and physicians were its heart and soul (Rosenberg, 1982). Since that time, the hospitals have fought to maintain their hegemony in this tremendously complex system and its disease-based focus on the pro - vision of care. Starting in the 1990s, public policymakers sought to move the center of the organization of healthcare delivery away from hospitals. In part, this was accomplished by promoting tech - nological changes that meant care previously provided in a hospital could now be provided in nonhospital ambulatory care settings. Chang - ing surgical practices, for example, enabled pa - tients to be operated on and discharged the same day (Kalra, Fisher, & Axelrod, 2010). The im - plication was that surgical suites could be dis - connected from hospitals that were structured to provide inpatient care. Second, both public and private health insurance shifted away from Hospitals in a Historic Context 293 fee-for-service retroactive payments. Rather than paying for everything and anything ordered by the physician and provided by the hospital, insurers negotiated payments for services deemed “medically necessary.” Some services were cov - ered in full; others were not (Baicker, Chernew, & Robbins, 2013). Taken together, these changes made possible the idea of integrated care models embedded in the 1993 Clinton Health Security Act proposal. Increasingly, it was understood that even the most complex patient care could be provided in a variety of settings. What was important was to focus on the integration of services across settings so that patients did not become lost between providers and there was better management of healthcare costs. The hospitals’ response to President Clin - ton’s health plan proposal and the challenges posed by both changing medical care practice and payers seeking less costly ways to provide services was to look for ways to integrate many modalities under their roof. Many hospitals, for example, purchased physician practices to cen - tralize the payment and control the delivery of services. The 1990s movement towards inte - grated models of care, however, floundered with the public reaction to tightly controlled man - aged care and the demise of healthcare reform.

The idea of service integration to which most policy analysts subscribed was not formally on the public agenda again until consideration of the Affordable Care Act in 2009 to 2010. The ACA made the necessity to change imminent.

Medicare payments to hospitals incorporate value as well as the bundling of care, including inpatient, outpatient, clinician, and posthospi - tal care. There is little room left for independent providers. All the financial incentives point to - wards consolidated, integrated, and managed models of care.

▸ Baseline Information In 1920, the second Hospital Census identi - fied 5,700 institutions, practically the same number as today (Starr, 1982.) The number of hospitals peaked at approximately 7,200 in the early 1970s, and by 2015 there were 5,564 hos - pitals (American Hospital Association [AHA], 2017). Of these, 4,862 are community hospitals.

A community hospital is broadly defined as a nonfederal, short-term, general, and other hos - pital whose services are available to the public (AHA, 2016) and where the average length of stay (LOS) is less than 30 days. This definition excludes hospital units in institutions that are not available to the public, such as prisons. Dis - cussions about hospitals typically refer to com - munity hospitals. There are 702 noncommunity hospitals. Noncommunity hospitals include fed - eral (Veterans Adminstration [VA], U.S. Public Health Service, and Marine hospitals) and long- term institutions (AHA, 2016). Their defining characteristic is a LOS that is greater than 30 days. Long-term general hospitals refer to psychi - atric hospitals, tuberculosis and other respiratory diseases hospitals, institutions for the intellectu - ally disabled and alcohol and chemical depen - dency, and long-term stay units in short-term institutions. The number of community hospitals is de - clining. Most recent closures were rural hos - pitals and “safety net” urban hospitals that are financially at risk because they serve patient populations with limited ability to pay. Despite a growing and aging population, an increase in surgical operations, and growth in the number of births, admissions numbers since 2000 have been flat. However, the decreased average LOS means the number of beds is also declining. TABLES 14-1 and 14-3 provide more detailed in - formation about community hospitals. As can be seen in Table 14-1, the number of hospital beds fell by more than 200,000 between 1980 and 2014. During the same 25-year period, the number of outpatient encounters, however, has increased over 300%. When looking at surgical operations, for example, there is a steady in - crease in the number of outpatient surgeries and a decrease in the number of inpatient surgeries. The average number of beds in Ta b l e 14-1 shows that the typical community hospital is quite small—averaging between 150 and 200 294 Chapter 14 Hospitals: Consolidation and Compression beds. They are not large institutions equipped with facilities to provide the complexity of ser - vices required for many of the surgeries in - dicated in the table. The typical hospital size stands in sharp contrast to a city like New York, NY, where practically every hospital has more than 200 beds (New York State Department of Health, 2009). The larger hospitals tend to be academic medical centers or affiliated hospitals that train physicians and care for people with complex medical and social problems. These hospitals find themselves in competition for patients with the smaller community hospitals.

One dominates regarding numbers and the other regarding prestige. Hospitals had been a prime driver of in - creasing healthcare costs since the passage of Medicare. Hospitals costs comprise the largest TABLE 14-1 Community Hospitals, Beds, Admissions, Average Length of Stay, and Occupancy Rate—Selected Years 1980–2014 Category 1980 1990 2000 2010 2014 Hospitals 5,830 5,384 4,915 4,985 4,926 Beds 988,287 926,436 823,560 804,943 786,874 Beds/hospital 169 172 168 161 160 Admissions (in millions) 36.1 31.2 33.2 35.2 33.1 Admissions (per 1,000) 159.5 125.3 117.6 113.7 103.7 Average length of stay (in days) 7.6 7.2 5.8 5.4 5.5 Occupancy rate (percent) 75.2 66.8 63.9 64.5 61* Inpatient surgeries (in millions) 15.7 10.8 9.7 10.0 9.0 Outpatient surgeries (in millions) 3.1 11.1 16.4 17.4 17.4 Emergency department (ED) visits (in millions) N/A 86.7 103.1 127.2 136.3 ED visits (per 1,000) N/A 349 366 412 428 Outpatient visits (in millions) 202.3 300.5 521.4 651.4 693.1 Outpatient visits (per 1,000) 892.9 1,208.0 1,852.8 2,107.8 2,173.7 All data except occupancy rate from American Hospital Association. (2016). TrendWatch Chartbooks 2000-2003, 2016 . Retrieved from http://www.aha.org /research/reports/tw/chartbook/index.shtml; data for occupancy rates from Centers for Disease Control and Prevention, National Center for Health Statistics. (2016). Health United States, 2015: With special feature on racial and ethnic health disparities . Hyattsville, MD: U.S. Government Printing Office. Table 89. Hospitals, beds, and occupancy rates, by type of ownership and size of hospital: United States, selected years 1975–2013. *MEDPAC, (March 2016). Report to Congress: Medicare payment policy. p. 62. Baseline Information 295 single portion of spending in the healthcare sec - tor. More is spent on hospitals than is spent on Social Security or defense (Kocher & Emmanuel, 2012). In 2014, hospital spending was $972 billion dollars or 38% of personal healthcare spending. As TABLE 14-2 indicates, the rela - tive percentage of health spending on hospi - tals rose dramatically between 1960 and 1980, TABLE 14-2 Personal Health Expenditures and Hospital Expenditures by Source of Funds—Selected Years 1960–2014 Expenditure by Source of Funds 1960 1970 1980 1990 2000 2009 2014 Per capita $125 $300 $942 $2,425 $4,121 $6,905 $8,054 Personal health expenditures (in billions) $23.3 $63.1 217.0 $615.3 $1,162.0 $2,115.9 $2,563.6 Percent distribution Out of pocket 55.7 39.6 26.8 22.4 17.1 13.9 12.9 Private insurance 21.3 22.3 28.4 33.3 34.9 34.7 33.9 Medicare N/A 11.5 16.7 17.4 18.6 22.2 22.7 Medicaid & CHIP (2000) N/A 8.0 11.4 11.3 16.3 16.9 17.8 All other 23.0 18.6 16.7 15.6 13.0 12.3 12.7 Hospital expenditures (in billions) $9.0 $27.2 $100.5 $250.4 $415.5 $778.1 $971.8 Percent distribution Out of pocket 20.6 9.0 5.4 4.5 3.2 3.3 3.2 Private insurance 35.6 32.5 36.6 38.5 33.9 36.6 37.3 Medicare 19.7 26.1 26.9 29.7 27.6 25.8 Medicaid & CHIP (2000) 9.7 9.2 10.6 17.3 17.6 17.6 All other 43.8 29.1 22.8 19.4 15.9 15.0 16.2 Data from Centers for Disease Control and Prevention, National Center for Health Statistics. (2016). Health United States, 2015: With special feature on racial and ethnic health disparities . Hyattsville, MD: U.S. Government Printing Office. Table 95, Personal health care expenditures, by source of funds and type of expenditure: United States, selected years 1960–2014.

296 Chapter 14 Hospitals: Consolidation and Compression representing almost 50% of personal health - care spending in 1980. Cost-control efforts on the part of the government and private health insurance companies have managed to bring these costs down, and hospital spending is just slightly lower as a percentage of all healthcare spending than it was in 1960. As the aver - age annual growth in healthcare spending has slowed, so has the growth in hospital spend - ing. Since 2009, the rate of increase in hospi - tal spending has been steadily declining. The source of payment has also changed consider - ably over the last 60 years. The government is the largest single payer of hospital costs. This is a direct result of the passage of Medicare and Medicaid in 1965 and the ACA in 2010.

There was no accounting of the federal and state spending as a percent of hospital expen - ditures in 1960. By 2014, it accounted for over 40% of hospital expenditures. As government funding increased, private insurance payments remained relatively constant, but there was a marked decline in out-of-pocket payments. Between 1960 and 2014, direct out-of-pocket payments decreased from 21% to just over 3% of hospital expenditures, but are ticking up as costs are shifted from insurance to patients. There are three types of community hos - pitals based on ownership: (1) nonprofit hos - pitals include both community-based hospitals and academic health centers, (2) public hospi - tals are state and locally owned hospitals, and (3) privately owned or for-profit hospitals (Starr, 1982). Ownership creates different financial and legal constraints on the institutions that impact both the population served and the underlying financing of the institution. Two major shifts can be seen in the distribution of hospitals and hospital beds by ownership type in TABLE 14-3. The first is the steady decline of nonprofit TABLE 14-3 Community Hospitals and Beds by Type of Ownership, Selected Years Type of Ownership 1975 1980 1990 2000 2010 2013 Hospitals Nonprofit 5,875 5,830 5,384 4,915 4,985 4,974 For-profit 775 730 749 749 1,013 1,060 State and local government 1,761 1,778 1,444 1,263 1,068 1,010 Beds Nonprofit 658,195 693,459 656,755 582,988 555,768 543,929 For-profit 73,495 87,033 101,377 109,883 124,652 134,643 State and local government 210,154 208,895 169,228 130,689 124,523 117,031 Data from Centers for Disease Control and Prevention, National Center for Health Statistics. (2016). Health United States, 2015: With special feature on racial and ethnic health disparities . Hyattsville, MD: U.S. Government Printing Office. Table 89. Hospitals, beds, and occupancy rates, by type of ownership and size of hospital: United States, selected years 1975–2013. Baseline Information 297 community hospitals. Hospitals that have been lost to the sector typically served a low-income population that was either uninsured or did not have adequate insurance coverage. These hos - pitals had fewer beds and decreased operating margins (Daugherty & Escobedo, 2013). As a result, they were the most financially vulnera - ble. Alternatively, there has been growth in the for-profit sector that can be attributed, in part, to the purchase of failing nonprofit hospitals (Ault, Childs, Wainright, Young, & Williams, 2011). The growth of the for-profit sector marks an intensification of financial imperatives driv - ing change in the hospital sector. Likely, the loss of community hospitals will mean that low in - come patients have even fewer options available to them for hospital care (Bazzoli, Lee, Hsieh, & Mobley, 2012).

▸ Challenges Facing the Community Hospitals The pressures that hospitals have experienced since the 1980s are related, in part, to the rap - idly changing knowledge about how to manage and treat disease and, in part, to increased ef - forts to control healthcare costs. The imperative to control cost came from the fact that health care consumed an ever-larger share of domes - tic spending. Consequently, hospitals find them - selves contending with excess capacity despite the closure of many hospitals. The increasing competitive market for hospital services makes a hospital’s survival dependent on its ability to control enough of the paying market to gener - ate adequate revenues to cover costs.

Excess Capacity Hospitals have been forced to deal with surplus inpatient capacity because of declining admis - sions and decreased LOS. There are 3  million fewer admissions today than there were in 1982, even though the population has increased by more than 92  million persons. In addition to the declining rate of admissions, between 1980 and 2014, the average LOS in the United States decreased 28% from 7.5 to 5.5 days. As a result, the occupancy rate of U.S. hospitals is about 61% (Medicare Payment Advisory Commis - sion [MEDPAC], 2016). There is wide variation in the number of beds and the number of inpatient days per 100,000 persons across the country (see FIGURE 14-1). Ironically, excess capacity is not highly cor - related to number of inpatient beds. In areas where there are fewer beds and fewer inpatient days, there is excess hospital capacity; however, in areas where there are more beds and inpatient days per 100,000, there may be even less excess capacity. While the count of inpatient beds has declined by 20%, the number of beds per 1,000 population has decreased by one-third. The declines in admissions and LOS are the result of many factors. First, there has been an improvement in the nation’s health. The in - cidence of breast cancer in women under age 65 years, for example, is declining. The same is true for coronary disease, cardiovascular dis - ease, and pneumonia. Second, there are the growing alternatives to hospitalization. The management of diseases and conditions that required hospitalization has changed dramatically. Scientific advances have minimized the invasive nature of many proce - dures and changed our understanding of how best to care for patients (Kalra et  al., 2010). It is now the case that myriad surgeries and di - agnostic and other procedures can be done in ambulatory settings. Ambulatory surgery cen - ters, diagnostic imaging, and radiological cen - ters are being opened throughout the country (Mitchell, 2007). Thirdly, reductions in admissions and LOS have occurred because of changing pay - ment methodologies. The first studies of health maintenance organizations (HMOs) found that hospital admissions for HMO patients fell by as much as 40% (Luft, 1981). LOS declined with the implementation of hospital payment based on 298 Chapter 14 Hospitals: Consolidation and Compression diagnosis-related groups (DRGs) in 1983 1 rather than per day (per diem) payments. With a fixed price for each type of patients, DRGs created in - centives to discharge patients more quickly. The growth of managed care further impacted hos - pitals as physician risk-sharing contracts meant physicians receive more income if their patients used fewer and less-expensive services—the challenge was to better manage patients’ care by treating patients in less-costly settings and eliminating or reducing inpatient stays (Draper, Hurley, Lesser, & Strunk, 2002). The issue of hospital capacity has been further complicated by implementation of the ACA since increased insurance coverage leads to increased demand for services. However, the data to date indicate the management of patient flows as opposed to an increase in admissions and occupancy rates. Last, it is important to note the contribution of long-standing variation in medical practice patterns that accounts for the regional varia - tions described (Mechanic, 2011). 1 Diagnosis-related group is a system of payment for hospital inpatient services based on predetermined rates per discharge for approximately 500 groupings. It was developed for Medicare and has been in use since 1983. A Medicare recipient is assigned to a payment group depending on principal diagnosis. Other criteria include the patient’s age, sex, secondary diagnoses, procedures performed, discharge status, com - plications, and comorbidity.

FIGURE 14-1 Hospital Beds per 1,000 Population, 2015 Reproduced from Kaiser Family Foundation. (2015). Hospital beds per 1,000 population by ownership type. Retrieved from http://kff.org/other/state-indicator/beds/# AK HI WA ID MT WY CO ND MN IA MO AR LA MS AL GA FL NJ DE MD SC NC TN KY IN IL WI MI OH WV PA VA NY ME VT NH MA CT RI SD NE KS OK TX NM AZ UT NV OR CA DC 0.2-0.4 0.5-0.8 0.9-2.2 NA 0.0-0.1 Hospital beds per 1,000 population by ownership type: state/local govern\ ment, 2015 Challenges Facing the Community Hospitals 299 Increasingly Competitive Financial Environment Hospital financing has gone through three dis - tinct phases and is entering a fourth. Initially, hospitals were financed by philanthropy. Hospital matrons would sit with wealthy trustees to nego - tiate a budget that they would fund through an - nual donations (Rosner, 1982). These donations paid the hospital’s small administration staff and operating expenses. Patients were cared for by each other and by student nurses who worked for free in return for their education and certifi - cation. By the early decades of the 20th century, hospitals needed more income than a few bene - factors could regularly supply. They became in - creasingly dependent upon patient payments for service. The 1920s boom in hospital construc - tion ended abruptly as the country fell into the depths of the Great Depression. With the stock market crash of 1929 and ensuing financial cal- amity, hospitals’ revenues fell dramatically. One response was the organization of Blue Cross to guarantee patient payment for hospital services.

At its origin, Blue Cross offered Dallas teachers 21 days of care for $6 a year. Blue Cross began as a wholly owned subsidiary of the hospital’s trade group, the American Hospital Associa - tion. It remained so until the early 1970s when the Congress forced the American Hospital As - sociation to divest (Law, 1986). Blue Cross and other retrospective payers arrived on the scene and covered the costs associated with a specific segment of the hospital’s patients. Blue Cross funded hospitals retrospectively. Put simply, there was an annual reckoning. At the end of the year, Blue Cross would pay its share of hospital costs. If 50% of the patients were Blue Cross subscribers, Blue Cross would pay half of the hospitals’ annual expenses. Medicare was es - tablished in 1965 with a similar reimbursement scheme. This inherently inflationary payment mechanism was replaced in the 1980s with pro - spective payment. In this third phase of hospital financing, led by the introduction of Medicare’s Prospective Payment System in 1983, hospitals were paid a fixed amount based on the type of illness and type of patient—known as DRGs.

The theory underlying this reimbursement sys - tem was that hospitals would increase efficiency to cover costs. There is some evidence that this happened (Lee, Berenson, Mayes, & Gauthier, 2003). On the other hand, critics charged that hospitals were discharging patients “sicker and quicker” to achieve the same ends (Newcomer, Wood, & Sankar, 1985). Private insurers ad - opted similar reimbursement schemes. By the early 1990s, virtually all hospital reimbursement systems contained some element of the prospec - tive payment, case-based system. With each payment iteration, reimbursement became more specific and more focused. With the growth of managed care and the power of pri - vate insurers to direct where patients receive care, hospitals have had to provide steep discounts in exchange for guaranteed patient share. Medicare and Medicaid, the public payers, accounted for 54% of all hospital care in 2014 (National Center for Health Statistics, 2016) but reimburse hos - pitals less than full cost (AHA, 2016). Medicare paid only 92 cents for each dollar spent caring for a Medicare patient, and Medicaid paid only 89 cents for every dollar spent by the hospital.

The combined funding shortfall for hospital care was almost $37 billion. The size of hospitals’ dis - count rates to private insurers is dependent on the market. Where hospitals are part of systems, they can dictate prices to insurers. Where there is an insurance concentration, they can negoti - ate lower prices (Frakt, 2010). The other area where financial stress can be seen is in access to capital (Robinson, 2002).

Hospitals were encouraged to debt finance, as all interest and depreciation expenses were treated as allowable costs and could be built into their hospital payments from public and private in - surance companies. Without adequate capital, hospitals cannot replace or modernize outdated facilities, respond to changing demand such as the growth of outpatient surgery, or add new technology and equipment, but getting capital is sometimes difficult. For-profit hospitals have greater access to capital, as they can sell stocks and bonds in the public markets. Nonprofit 300 Chapter 14 Hospitals: Consolidation and Compression and public hospitals finance most capital needs through tax-exempt revenue bonds. Multihos - pital systems with substantial assets and cash flow have an easier time gaining access to cap - ital markets than freestanding hospitals. Those in the worse position are in inner-city and ru - ral hospitals. Competition for scarce resources reinforces the situation whereby the strongest and best-financed hospitals get stronger, and the weak, less-financed hospitals get weaker.

Vulnerable Hospitals Serve Vulnerable Populations The financial shortfalls are not evenly spread across all hospitals. Hospitals with highest pro - portion of paying patients are the most viable economically. Hospitals that disproportion - ately serve the working poor, the unemployed, those with inadequate insurance, undocumented immigrants, and Medicaid patients are most vulnerable due to low reimbursement rates (Tompkins, Altman, & Eilat, 2006). These might be public or nonprofit hospitals. The situation of public hospitals is further complicated by their provision of unprofitable services that are highly labor intensive (Horwitz, 2005). These are inpatient and outpatient ser - vices that combine medical and social services that many nonprofit hospitals find too costly to offer. In the 10 largest cities, public hospitals ac - count for 11% of acute care hospitals but provide 20% of emergency visits and 27% of outpatient visits. These hospitals represent 32% of Level I trauma providers and 58% of the beds for burn patients (National Association of Public Hos - pitals and Health Systems, 2009). Their debt is picked up by local government, but the tax base is not adequate in lower-income communities to assure their survival. Local tax revenues have risen less quickly than hospital costs. Hospitals in rural areas were largely built as a result of the Hill-Burton legislation (Dow - ell, 1987). To distribute funds equitably across the 50 states, money went into the construction of hospitals in communities of less than 10,000 persons. There are currently 2,000 rural hospi - tals, which is 40% of all nonfederal hospitals.

Rural hospitals are even more financially vul - nerable than many of the inner-city community hospitals because they tend to be smaller, have less than 50 beds, and cannot offer highly com - plex care. As a result, there is a reduced demand for rural hospital beds because many medical procedures that might have been done in such a facility can now be done on an outpatient ba - sis. They have occupancy rates of less than 40%.

Also, rural hospitals received a lower DRG rate than do urban hospitals, and they have increased debt from bills that are uncollectable due to serv - ing very-low-income patients (Chul-Young & Moon, 2005). Recognizing the need for hospi - tals in rural communities, Medicare has created a category of rural hospital called Critical Access Hospitals (CAH). CAHs have an average LOS of 96 hours, no more than 25 beds, and are re - imbursed based on cost plus 1%, as opposed to fixed reimbursement rates (Centers for Medi - care & Medicaid Services [CMS], 2013).

▸ Hospital Strategies in a Competitive Market With hospital survival dependent on their gen - erating adequate revenues to cover costs, hos - pitals have found themselves investing in two types of strategies to assure their financial via - bility. Both aim to control the market for health services. The first is the creation of formalized hospital networks so that hospitals strengthen their competitive position vis-à-vis health in - surers. The second is to hire physicians so that hospitals do not find themselves in competition with the doctors who increasingly can provide a wide range of services in ambulatory settings.

Networks and Systems Hospitals have sought to secure their situation by seeking control over the market for health services through consolidations and mergers Hospital Strategies in a Competitive Market 301 (Kocher & Emanuel, 2012). This is not a new strategy, and it has proved relatively successful.

Health plans prefer more inclusive networks as they best meet the preferences of physicians and patients. Control over local and regional mar - kets has also proven financially beneficial to hospitals as they have been better able to dic - tate prices. Health plans (insurance companies) find they have little or no negotiating power if hospitals control the supply of services. As a re - sult, prices for hospital care are reported to be 13% to 25% higher where there is consolidation in hospital markets (Kendall, 2012). Starting in 1999, the American Hospi - tal Association began reporting statistics on the number of hospitals that were identified as part of hospital systems that were defined as “a corporate body that may own and manage health provider facilities or health-related sub - sidiaries as well as non-health-related facilities including freestanding and/or subsidiary cor - porations” (2016). The number of mergers per year has been increasing since 2000. It leveled off in 2006 to 2007 but then began to rise again following passage of the ACA. Over the last 15 years, there have been 1,163 hospital merger deals—some involving many hospitals, some only one or two institutions. In total, 3,000 hospitals have been involved in mergers or acquisitions since the turn of the century. In 2014, 65% of all community hospitals identified themselves as being part of a system (AHA, 2016). Deloitte, a major accounting and consulting firm, pre - dicts the complete disappearance of indepen - dent hospitals by 2024 (Skillrud, Gerhardt, & Shukla, 2014) ( FIGURE 14-2). Hospital/Physician Integration Not only have hospitals sought to control the market for hospital services, but they have also sought to control patient admissions through their relationships to the physicians who direct patient care. Affiliations with primary care physicians ensure referrals into the hospitals’ specialty prac - tices whose services were highly lucrative, such as cardiothoracic surgery. Many younger physi - cians and physicians in primary care, who faced reimbursement rates that have been relatively constant and who want more balanced lifestyles, FIGURE 14-2 Announced Hospital Mergers and Acquisitions, 1998–2015 Reproduced with permission from Irving Levin Associates, Inc.. 0 50 100 150 200 250 300 350 1 988 1989 2000 20012002 2003200420052006200720082009 2010 2011 2012 2013 2014 2015 Number of deals Number of hospitals 302 Chapter 14 Hospitals: Consolidation and Compression have opted for such arrangements. It becomes a way to have greater leverage when negotiat - ing rates with insurers and more steady hours (O’Malley, Bond, & Berenson, 2011). The first round of hospitals purchasing physician practices began in the 1990s. Hospitals lost money on these arrangements as com - pensation was salary based, not productivity based (Kocher & Sahni, 2011). Poorly developed contracts guaranteed physicians almost 100% of their previous year’s salary. This arrangement in - variably led to losses as physicians continued to provide lucrative services in settings not affili - ated with the hospitals (O’Malley et al., 2011).

Once again, hospitals are looking to employ phy - sicians. In part, this is driven by fear that phy - sicians will become competitors by aggregating into larger integrated groups that direct referrals and utilization to their advantage. Strategically, hospitals with robust employment strategies be - lieve they will be positioned to compete under a variety of reimbursement scenarios because hospital-employed primary care physicians di - rect patients to their hospitals and the specialists affiliated with them (Kocher & Emanuel, 2012).

As the payment system moves toward risk-based (“value-based”) reimbursement, large outpa - tient networks will allow a system to shift pa - tients away from higher-cost hospital-based care and capture revenue that otherwise would have been lost. By January 2015, 38% of physicians were employed directly by hospitals (Physicians Advocacy Institute, 2016).

▸ The ACA and The Rationalization of Hospital Care Not since the implementation of DRG-based reimbursement systems has federal action de - manded so many changes in the hospital sector.

Built into the Affordable Care Act (ACA) legisla - tion are provisions that address both the organi - zational fragmentation of the healthcare system and the financial incentives that have led to rap - idly increasing costs. The provisions related to the organization of accountable care organiza - tions (ACOs) create a mechanism whereby pro - viders who previously operated independently within a community develop mechanisms that assure patients of receiving comprehensive and continuous care. Also, the ACA uses the reimbursement system to support the align - ment of these providers. While the ACOs and pay-for-performance (P4P) constructs are still in their infancy, they incorporate legislative incen - tives to improve quality and control costs. Under threat of reduced Medicare (and in some cases Medicaid) reimbursement, whether organized in ACOs or not, hospitals have been required to adopt electronic medical records systems, reform their inpatient safety procedures, and manage all levels of care from preadmission to postdischarge services.

Accountable Care Organizations and the Alignment of Services The concept of integrated care is not new. The model of an organization taking responsibility for the provision of comprehensive and contin - uous care has origins with health maintenance organizations first organized in the 1930s. These organizations bore the risk for ensuring that pa - tients received all-inclusive services. With the growth of managed care in the late 1980s, there was pressure for hospitals to integrate services both vertically and horizontally. The rational for integration was twofold. By creating a continuum of care, the quality of care would be improved, and by reorganizing payment using global cap - itation and risk contracting, it would be more efficient. The 1980s assumptions that drove the growth of managed care were not borne out. Un - der the influence of fixed capitation payments, providers often sought to maximize their reve - nues by denying or delaying care. The projected economies of scale did not follow the develop - ment of these first integrated systems nor did synergies occur (Burns & Pauly, 2001). Instead, The ACA and The Rationalization of Hospital Care 303 integration became a financial strategy to pro - tect hospital position. The term accountable care organization was first used in 2006 as a new way to explain efforts to make care providers responsible for both the quality of care and the costs of care. This would be achieved through payments linked to qual - ity improvement. Demonstration programs funded by the Centers for Medicare & Medic - aid Services (CMS) led to the inclusion of lan - guage about ACOs in the Affordable Care Act.

The ACA created the Medicare Shared Savings Program (MSSP), which encourages voluntary groups of physicians, hospitals, and other health - care providers to become identified as ACOs.

According to the legislation, over a 3-year pe - riod, the ACOs become responsible for the over - all quality, cost, and care of a defined group of at least 5,000 Medicare beneficiaries. By includ - ing the MSSP in the ACA, it becomes a perma - nent option under Medicare. There is a clear understanding that care coordination is not easily achieved and that creating ACOs can be costly. The success of ACOs relies very heavily on shared informa - tion systems that enable providers in different practice settings to work from the same data - base so they have access to information about prior medical care and can avoid unnecessary duplication of services. The implementation of electronic health records is expensive and raises complex problems related to data com - patibility and data sharing (Friedman, Par - rish, & Ross, 2013). The difficulties and costs were recognized by the Health Information Technology for Economic and Clinical Health Act (HITECH Act), a part of the American Recov - ery and Reinvestment Act of 2009, which offered hospitals and other providers financial assistance and incentives to support rapid adoption of elec - tronic health record technology during the pe - riod 2011 to 2014. Any hospital that failed to adopt meaningful use of electronic medical re - cords by 2015 would become subject to signifi - cant financial penalties—an increasingly large reduction in their year-to-year market-basket price increases. The carrot and stick approach is working. In 2008, only 9.4% of hospitals had adopted basic electronic health record technol - ogy. As of 2015, nearly all hospitals had been certified as having met the technological capa - bility, functionality, and security requirements required by the U.S. Secretary of Health and Human Services. This extraordinary growth was accomplished in less than a decade (Henry, Pylypchuk, Searcy, & Patel, 2016). ACO take-up has also been very rapid. As can be seen on FIGURE 14-3, at the end of Jan - uary 2016, there were 838 active ACOs in the U.S. Just 5 years earlier there were 64. Results are mixed as to whether ACOs reduce overall healthcare costs. About half of Medicare ACOs (205 ACOs) reported $1.6 billion in costs be - low benchmarks in 2015. At the same time, 189 Medicare ACOs had expenditures $1.1 billion over their benchmarks. Net-net, according to health policy researcher Ashish Jha, the sav - ings of approximately $0.5 billion in Medi - care’s $646 billion program “is decidedly mixed news for the ACO program” (Jha, 2016). Find - ings related to the impact of ACOs is still be - ing studied although early reports also suggest mixed results depending on the patients served (Kocot & White, 2016).

Payment Reform to Improve Quality While payment reform has had a decidedly un - even impact on cost, its effect on quality is much more well established. The use of payment in - centives and penalties is a way to influence how medicine is practiced. The overall intent is to de - sign reimbursement so that there are incentives for practitioners to coordinate care and control costs. Starting in 1983 with the implementation of DRGs, hospitals changed the way they cared for patients and monitored length of stay with a concomitant reduction in cost (White, 2013).

In 2011, Medicare extended the concept to bun - dled physician services and postoperative care 304 Chapter 14 Hospitals: Consolidation and Compression into the prospective payment system. By bun - dling payments, physician interests were aligned with the hospitals as well as with postoperative care providers. All benefited from care coordina - tion. As was demonstrated with the introduction of DRG payment schemes, the evidence shows if one significant payer like Medicare changes the way payment is structured, hospitals in turn reform the way they provide care regardless of payer. For example, Medicare introduced reim - bursement penalties for patient safety incidents such as central-line infections, sepsis, and other hospital-acquired conditions (HACs) in 2010.

While 738 hospitals were penalized in 2015, there had been a decline of 21% in all HACs between 2010 and 2015, not just those in which elderly patients were harmed—a cumulative reduc - tion of 3.1 million cases (Agency for Healthcare Research and Quality [AHRQ], 2015). Pay for performance (P4P) is another strategy to control costs by better aligning hospitals and doctors to improve quality. The pay-for-performance model adjusts the fee-for- service payment system by making higher pay - ments for higher quality care. CMS initiated its first pay-for-performance program in 2003. Under the aegis of the ACA, some new or en - hanced P4P programs were specifically designed to improve hospital quality of care.

■ Hospital Value-Based Purchasing pro - gram. 1% of Medicare-based payments are withheld from 3,500 eligible hospitals and redistributed based on whether a hospital meets 20 specific quality standards. Hospitals that score well are given bonus payments. ■ Hospital Readmission Reduction Program.

A penalty of up to 3% of all Medicare pay - ments is applied when a hospital readmits patients with heart attack, heart failure, pneumonia, chronic obstructive pulmo - nary disease (COPD), elective hip or knee replacement, and coronary artery bypass graft (CABG) within 30 days of discharge.

While there remains disagreement of the extent to which improvements in hospital qual - ity are due to payment interventions or result from changes in medical practice that might have occurred, there is no question that U.S.

hospital care is safer today than it was before the 2010 passage of the ACA. Medicare hospi - tal readmission rates began falling in 2012 and FIGURE 14-3 ACOs Over Time Reproduced from Muhlestein, D., & McClelland, M. (2016). Accountable Care Organizations In 2016: Private and public-sector growth and dispersion. Retrieved from https://www.healthaffairs.org/do/10.1377 /hblog20160421.054564/full/ Q1 2011 Q1 2012 Q1 2013 Q1 2014 Q1 2015 Q1 2016 900 800 700 600 500 400 300 200 10 0 0 Number of pub lic & privat e ACOs The ACA and The Rationalization of Hospital Care 305 have continued to decline since. For example, heart failure readmissions fell from 24.7% (July 2008 to June 2011) to 22% (July 2011 to June 2014). Likewise, readmissions for heart attack declined from 19.7% to 17% and readmissions for pneumonia fell from 18.5% to 16.9% (Boccuti & Casillas, 2017). There are many fewer instances of patients harmed by their hospital stays. Most dramatically, AHRQ estimates 124,348 averted deaths between 2011 and 2015 as a result in the decline of HACs.

▸ Healthcare Policy, Health Reform, and the Role of Hospitals Although much altered since the turn of the 21st century, hospitals remain at the center of the U.S. healthcare delivery system. The 5,000 general care hospitals still account for more than one-third of healthcare spending. As centers of patient care, teaching, and research they con - tinue to influence everything that happens on the US health system. In 1982 Paul Starr, author of The Social Transformation of American Medicine , surveyed the state of health care in the early years of the Reagan Administration. He predicted a com - ing corporatization: The failure to rationalize medical services under public control means that sooner or later they would be ra - tionalized under private control (Starr, 2017, p. 449).

His prediction rings truer today than it did 35 years ago. Hospital corporatization has taken three main forms: for-profit hospital/physician systems; nonprofit fully integrated healthcare systems; and hybrid nonprofit/for-profit networks of hospitals, practices, technology, and insurance entities operated by nonprofit hospital-organized holding companies. The largest for-profit chain is Nashville-based Hospital Corporation of America (HCA). In 2017 it owned 172 hospitals, 119 free-standing surgical centers, 71 urgi-care centers, and 830 physician clinics plus several complementary businesses. The largest noncare business is Par - allon, an outsourcing firm that offers various healthcare management functions, including rev - enue cycle, workforce management, and supply chain operations. Reporting 27 million patient encounters in 2016, it employed 240,000 people including 80,000 RNs and 37,000 MDs. HCA had $37 billion in operating income (HCA, 2016).

“We are committed to providing the commu - nities we serve with high quality, cost-effective health care,” according to its 2016 SEC filing, “while growing our business, increasing our profitability and creating long-term value for our stockholders” (HCA, 2016). Whether both goals can be accomplished in the same settings remains an open question. Kaiser Permanente is the quintessential fully-integrated, closed, nonprofit healthcare system. Kaiser, headquartered in Oakland, California, is both insurer and provider. First organized in 1945 to provide medical care to thousands of shipyard workers on the docks of Richmond, California, Kaiser Permanente has grown to 12  million subscribers cared for by 190,000 healthcare workers, including 54,000 RNs and 21,000 MDs. Kaiser is an HMO with a closed network. It provides care to no one other than its plan enrollees, and those enroll - ees are not covered for any out-of-network care.

Its $64.4 billion (2016) operating revenue sup - ported 38 hospitals and 673 medical offices, which include clinicians, labs, and radiological suites in 9 states and Washington, DC. A pro - totype for the HMOs that were created in the 1980s and 1990s, Kaiser’s patients are more likely to receive preventive care and far less likely to be admitted for inpatient services. Kaiser uses much of its excess operating income to invest in healthcare technology development. In fact, more patient–doctor interactions happened via telehealth (59 million) in 2015 than in per - son (50 million) (Kaiser Permanente, 2015). 306 Chapter 14 Hospitals: Consolidation and Compression To complete its vertical and horizontal integra - tion, Kaiser operates nearly a full complement of health professions training programs. Kaiser runs its school of allied health sciences, has a close affiliation with an RN/BSN-granting pro - gram at nearby Samuel Merritt University, and has received approvals to open the Kaiser Per - manente School of Medicine in 2019. Can a net - work that controls all its inputs produce better care at lower cost? New York’s Northwell Health System is an example of a nonprofit, hospital-led hybrid net - work. It is the fourteenth largest network in the U.S. Spanning 22 hospitals, 550 outpatient fa - cilities, and 16 postacute facilities, Northwell opened a medical school in 2011—the Hofstra Northwell School of Medicine, and in 2015, Hof - stra Northwell added a graduate school of nurs - ing and physician assistant studies. It is now the biggest private employer in New York state with 62,000 employees, including 15,000 nurses and 3,900 directly employed physicians. Its operat - ing budget in 2017 was $11 billion. In addition to a very substantial service network, Northwell has made significant investments in for-profit health-related entitles—HealthReveal (remote monitoring and analytics), Avizia (telehealth), Peerbridge Health (wireless cardiac monitoring), and Conversa (digital patient–doctor “discussion platforms”) (Northwell Health System, 2017). It has also created a commercial insurance com - pany to sell Northwell network–based products on and off the ACA marketplace. Not a closed or fully integrated network like Kaiser Perma - nente, most of its patients have non-Northwell commercial or public insurance. In which direc - tion is Northwell likely to go: to look more like the for-profit sector with its focus on finances or like a fully integrated healthcare conglomer - ate able but not certain to produce better care at a lower price? One prediction we can make with cer - tainty: There will be no standalone, indepen - dent hospitals in the United States. Whatever the resolution of the debate over the expansion of health insurance, consolidation and corpo - ratization in the health sector, often lead by the large academic medical centers, will be the dom - inant trend for the foreseeable future. Hospitals will be integrated into complex systems of care. What we cannot predict is the effect this accelerating process will have on patients or healthcare workers.

Discussion Questions 1. Why have hospitals experienced declining lengths of stay and admissions over time? 2. How do you explain the decline of free-standing, independent hospitals? 3. How have hospitals sought to ensure their position within the communities they serve? 4. How have initiatives codified in the Affordable Care Act changed the way hospitals function? References Agency for Healthcare Research and Quality (AHRQ). (2015). National scorecard on rates of hospital-acquired conditions 2010 to 2015: Interim data from national efforts to make health care safer. Retrieved from https:// www.ahrq.gov/professionals/quality-patient-safety /pfp/2015-interim.html American Hospital Association. (2016). Tr e n d Wa t c h Chartbooks 2000 –2003, 2016 . Retrieved from http://www.aha.org /research/reports/tw/chartbook/index.shtml American Hospital Association. (2017). Fast facts . Retrieved from http://www.aha.org/research/rc/stat-studies /fast-facts.shtml Ault, K., Childs, B., Wainright, C., Young, M., & Williams, M. D. (2011). Relevant factors to consider prior to an investor-owned acquisition of a nonprofit healthcare entity. Journal o f Healthcare Management, 56 (4), 269–280; discussion 280–281. Retrieved from http://search.proquest.com.remote.baruch.cuny.edu/docview /880298299/14113E6512A237173F9/3?accountid =8500 Baicker, K., Chernew, M., & Robbins, J. (2013). The spillover effects of M edicare managed care: Medicare advantage and hospital utilization. NBER Working Paper No. 19070. JEL No. I1,I13,I18. Retrieved from http://www.nber.org /papers/w19070.pdf Bazzoli, G. J., Lee, W., Hsieh, H. M., & Mobley, L. R. (2012, February). The effects of safety net hospital closures and conversions on patient travel distance to hospital services. Health Services Research, 47(1 Pt 1), 129–150. Retrieved from http://onlinelibrary.wiley.com.remote.baruch .cuny.edu/doi/10.1111/j.1475-6773.2011.01318.x/pdf 307 References Boccuti, C., & Casilllas, G. (2017, March). Aiming for fewer hospital u-turns : The Medicare hospital reduction program. Issue Brief. Kaiser Family Foundation. Retrieved from http://www.kff.org/medicare/issue-brief/aiming-for-fewer -hospital-u-turns-the-medicare-hospital-readmission -reduction-program/ Burns, L., & Pauly, M. (2001). Integrated delivery networks: A detour on the road to integrated health care? Health Affairs, 20(6), 128–143. Centers for Medicare & Medicaid Services (CMS). (2013). Critical access hospital: Rural health fact sheet series . Retrieved from https://www.cms.gov/Outreach-and -Education/Medicare-Learning-Network-MLN/MLN Products/downloads/CritAccessHospfctsht.pdf Chul-Young, R., & Moon, M. J. (2005). Nearby, but not wanted? The bypassing of rural hospitals and policy implications for rural health care systems. Policy Studies Journal, 33 (3), 377–394. Retrieved from http://search .proquest.com/docview/210555132?accountid =8500 Cutler, D. (2009). The next wave of corporate medicine —How we all might benefit. New England Journal of Medicine , 361, 549–551. Retrieved from http://dx.doi .org/10.1056/NEJMp0904259 Daugherty, D.A., & Escobedo, E. (2013). An empirical study of the determinants of safety-net hospital failures. Global Conference on Business & Finance Proceedings , 8(2), 79–88. Hilo, HI: Institute for Business and Finance Research. Retrieved from http://search.proquest.com .remote.baruch.cuny.edu/docview/1434203593/fulltext /14113C06F704328E039/1?accountid =8500 Dowell. M. (1987). Hill-Burton: The unfulfilled promise. The Journal of Health Politics, Policy and Law , 12(1), 153–176. Draper, D. A., Hurley, R. E., Lesser, C. S., & Strunk, B. C. (2002). The changing face of managed care. Health Affairs, 21(1), 11–23. Frakt, A. (2010). Expert voices: The future of health care costs: Hospital-insur er balance of power. Washington, DC: National Institute for Health Care Management (NIHCM) Foundation. Retrieved from http://www .nihcm.org/pdf/EV_Frakt_FINAL.pdf Friedman, D. J., Parrish, R. G., & Ross, D. A. (2013). Electronic health records and US public health: Current realities and future promise. American Journal of Public Health, 103 (9), 1560–1567. Retrieved from http://search.proquest .com/docview/1440078906?accountid =8500 Henry, J. Pylypchuk, Y., Searcy, T., & Patel, V. (2016, May). Adoption of electronic health record systems among U.S. non-fede ral acute care hospitals: 2008 –2015. Data Brief 35. The Office of the National Coordinator (ONC) for Health Information Technology. Retrieved from https://dashboard.healthit.gov/evaluations/data-briefs/non -federal-acute-care-hospital-ehr-adoption-2008-2015.php Horwitz, J. R. (2005). Making profits and providing care: Comparing nonprofit, for-profit, and government hospitals. Health Affairs , 24(3), 790–801. Hospital Corporation of America (HCA). (2016). HCA Annual Report Pursuant to Se ction 13 or 15(d) of the Securities Exchange Act for the fiscal year ended December 31, 2016. 2016 Annual Report to Shareholders. Jha, A. (2016, August 30). ACO winners and losers: A quick take. An Ounce of Evidence—Health Policy: The Blog of Ashish Jha . Retrieved from https://blogs.sph.harvard .edu/ashish-jha/2016/08/30/aco-winners-and-losers-a -quick-take/ Kaiser Family Foundation. (2015). Hospital beds per 1,000 population, 2011. Retrieved from http://kff.org/other /state-indicator/beds/# Kaiser Permanente. (2015). Annual Report, 2015. Retrieved from https://share.kaiserpermanente.org/static/kp _annualreport_2015/#quality Kalra, A.D., Fisher, R.S., & Axelrod, P. (2010, April 29). Decreased length of stay and cumulative hospitalized days despite increased patient admissions and readmissions in an area of urban poverty. Journal of General Internal Medicine , 25(9), 930–935. doi: 10.1007/s11606-010 -1370-5 PMCID: PMC2917661 Kendall, B. (2012, March 18). Regulators seek to cool hospital-deal fever. The Wall Street Journal Online . Retrieved from http://online.wsj.com/article/SB10001424052702303863404577286071837740832.html Kocher B., & Emanuel, E. J. (2012). Overcoming the pricing power of hospitals. Journal of the American Medical Association . 308 (12), 1213–1214. doi:10.1001/2012 .jama.11910 Kocher, R., & Sahni, N. R. (2011). Hospitals’ race to employ physicians—the logic behind a money-losing proposition. New England Journal of Medicine, 364 (19), 1790–1793. Kocot, S. L., & White, R. (2016, September 21). Medicare ACOs: Incremental progress, but performance varies. Health Affairs Blog. Retrieved from http://healthaffairs.org/blog /2016/09/21/medicare-acos-incremental-progress-but -performance-varies/ Law, S. (1986). Blue Cross: What went wrong? In P. Conrad & R. Kern (Eds.), The sociology of health and illness (2nd ed.). New York, NY: St. Martin’s Press. Lee, J. S., Berenson, R. A., Mayes, R., & Gauthier, A. K. (2003, July-December). Medicare payment policy: Does cost shifting matter? Health Affairs, Web Exclusives W3-480-8. Luft, H. S. (1981). Health maintenance organizations: Dimensions of performance . New York, NY: John Wiley and Sons. Mechanic, D., (2011). The ‘brilliant, persistent’ pursuit of health care as a complex social system. Health Affairs , 30(2), 362–363. Medicare Payment Advisory Commission (MEDPAC). (2016, March) Report to Congress: Medicare payment policy . Retrieved from http://www.medpac.gov/docs /default-source/reports/march-2016-report-to-the -congress-medicare-payment-policy.pdf?sfvrsn =0 308 Chapter 14 Hospitals: Consolidation and Compression Mitchell, J. M. (2007). Utilization changes associated with physician ownership of ambulatory surgery centers (ASCs). Paper presented at International Health Economics Association 6th World Congress: Explorations in Health Economics. Copenhagen, Denmark; July 5, 2007. Retrieved from http://ssrn.com/abstract =992622 Muhlestein, D., & McClellan, M. (2016). ACOs in 2016. Health Affairs Blog. Retrieved from http://healthaffairs .org/blog/2016/04/21/accountable-care-organizations -in-2016-private-and-public-sector-growth-and -dispersion/ National Association of Public Hospitals and Health Systems (NAPH). (2009, June 13). America’s safety net hospitals and health systems, 2007: Results of the NAPH Annual Hospital Characteristics Survey . Retrieved from http:// www.naph.org/Main-Menu-Category/Our-Work/Safety -Net-Financing/Characteristics-Report/Characteristics -2007.aspx National Center for Health Statistics (NCHS). (2016). Health, United States, 2015: With special feature on racial and ethnic health disparities . Hyattsville, MD: NCHS. Newcomer, R., Wood, J., & Sankar, A. (1985). Medicare prospective payment: anticipated effect on hospitals, other community agencies, and families. Journal of Health Politics, Policy and Law, 10 (2), 275–282. New York State Department of Health. (2009). Hospital profile. Retrieved from http://hospitals.nyhealth.gov/ Northwell Health System. (2017). About Norwell Health. Retrieved from https://www.northwell.edu /about-northwell-health O’Malley, A. S., Bond, A. M., & Berenson, R. A. (2011). Rising hospital employment of physicians: Better quality, higher costs? Issue Brief No. 136. Center for Health System Change. Retrieved from http://www.hschange .com/CONTENT/1230/ Physicians Advocacy Institute (PAI). (2016, September). Physician Practice Acquisition Study: National and regional employment changes . Retrieved from http:// www.physiciansadvocacyinstitute.org/Portals/0/assets /docs/PAI-Physician-Employment-Study.pdf Robinson, J. C. (2002). Bond-market skepticism and stock-market exuberance in the hospital industry. Health Affairs, 21 (1), 104–117. Rosenberg, C. E. (1982). From almshouse to hospital: The shaping of Philadelphia General Hospital. Milban k Memorial Fund Quarterly , 60(1), 108–154. Rosner, D. (1982). A once charitable enterprise: Hospital and health care in Brooklyn and New York, 1885–1915 . Princeton, NJ: Princeton University Press. Skillrud, I., Gerhardt, W., & Shukla, M. (2014). The great consolidation: The potential for rapid consolidation of health systems. Deloitte Center for Health Statistics. Retrieved from https://www2.deloitte.com/content /dam/Deloitte/us/Documents/life-sciences-health-care /us-lshc-great-consolidation-111214.pdf Starr, P. (1982, 2017). The social transformation of American medicine . New York, NY: Basic Books. Stevens, R. (1989). In sickness and in wealth: American hospitals in the twentieth century . New York, NY: Basic Books. Tompkins, C. P., Altman, S. H., & Eilat, E. (2006). The precarious pricing system for hospital services. Health Affairs, 25 (1), 45–56. White, C. (2013). Contrary to cost-shift theory, lower Medicare hospital payment rates for inpatient care lead to lower private payment rates. Health Affairs, 3 2(5), 935–943. 309 References CASE STUDY Rebranding of North Shore-LIJ Health System Barbara Caress Purpose/Scope To examine one aspect of corporatization of hospitals—an investment in rebranding effort to promote high-tech, patient services to a wider regional marketplace.

Background “I can’t tell you the number of people over the years who said you’re just a Long Island system,” CEO Michael Dowling explained in 2002 (LaMantia, 2015). North Shore-LIJ Health System (NS-LIJ ) was created in 1997 with the merger of Long Island Jewish Medical Center, an 827-bed, three-site hospital (general care, children’s, and psychiatric), and nearby North Shore Health System, a small, two-hospital “system.” By 2015 it had grown to a $7.4 billion operation encompassing 21 hospitals, 400 clinics and physician practices, 2,000 employed doctors, and 11,000 RNs. It created a research center and made financial deals with several for-profit hospital or health-oriented businesses. NS-LIJ sponsored the area’s first medical school and a graduate program for nurses and physician assistants. And in 2014 establishment of its own insurance company was announced (NS-LIJ, 2015). Straddling the New York City–Nassau County border, it was the dominant local hospital system. Eighty-five percent of its patients came from the boroughs of Queens (31%) and nearby Staten Island (15%) or one of Long Island’s two counties—Nassau (22%) and Suffolk (17%).

Despite its Manhattan, Brooklyn, and northern suburban presence only, 15% of patients came from outside the core service area. Although NS- LIJ was the largest health system in the NYC area (by beds, income, and discharges), expansion appeared to be blocked by the growth of four nearby, very large hospital networks, which together had captured much of the rest of the regional market. Courtesy of Northwell Health.

310 Chapter 14 Hospitals: Consolidation and Compression CASE STUDIES The Rebranding Program Bigness was not enough. “Who wants to be the Walmart of health care?” asked Ramon Soto, NS-LIJ’s newly hired senior vice president and chief marketing/communications officer (LaMantia, 2015). Unspoken was the limitations inherent in the inititals of its name—LIJ, which stood for Long Island Jewish, a sectarian local institution. NS- LIJ wanted to get beyond both attributes. It was difficult to reach a broader market, including the rapidly growing Chinese community, when the translation of the initials was Hospital for Jews by the Sea. In addition to hiring the experienced Mr. Soto, the health system engaged Monigle, a major branding company whose clients included Chase Bank, Enterprise Rent-A-Care, AT&T, plus several large hospital systems in the midwest and south.

Monigle conducted an array of surveys and focus groups with stakeholders (including current patients and staff ), and market research about the regional target communities of Connecticut, New Jersey, and New York City’s northern suburbs.

According to Justin Wartell, Monigle’s managing director, they were able to isolate key findings.

“What was intriguing about the New York region in general is it was the only market that we’ve yet encountered where the idea of innovation— latest medical treatments, latest technologies, cutting-edge medical breakthroughs—where those ideas or attributes matter” (Bermis, 2016). In September 2015, North Shore- LIJ announced that beginning January 1, 2016, the system would be known as “Northwell Health.” Facilities would retain their names with Northwell Health added as a tag line. According to CEO Dowling, the compound name was intended to convey a journey (North) and focus on preventive care (well). “A neutral name that has a meaning can be very helpful as we continue to build the organization” (LaMantia, 2015). The system’s leadership expected to increase their advertising budget six-fold from $2 million to more than $12 million (Ramey, 2015). A 30-second Super Bowl ad directed at the regional market, plus two 30-second pregame ads, ate up a substantial piece of that budget. Consistent with the findings described by its branding agency, Northwell’s TV ad campaign (18 commercial spots) focused on new technologies from genomics, to robotics, to a hospital curtain that reduces the threat of infection.

Each ended with the tag line, “Not just raising our standard of care, but the standard of care.” Stacey Bonhomme, a hospital intake clerk, commented that the name change was “a really big deal. It’s going to take a while to get used to, but it’s catchy” (Ramey, 2015).

Case Study Questions 1. Why do you think the system wanted to expand? Did it have to expand to be successful? 2. What were some important reasons for North Shore-LIJ to change its name? 3. What was the message the TV ads were trying to convey? Was this consistent with the meaning attributed to its new name?

What other types of care (services) might a healthcare system want to promote? 4. How might the values implicit in the branding campaign affect the way Northwell employees see their jobs? 5. Do you think rebranding changes the character of an institution? Or is more likely the other way around—the character of an institution shapes the name change? References Bermis, L. (2016, January 8). 8 questions with brand expert behind Northwell Health. Becker’s Hospital Review. Retrieved from http://www.beckershospitalreview.com /hospital-management-administration/8-questions -with-the-brand-expert-behind-northwell-health.html LaMantia, J. (2015, November 2). An $8 billion health care giant outgrows its name—and loses its Long Island accent . Crains New York Business , 31(44), 0010. North Shore-LIJ Health System. (2015). What’s possible: The face of health care’s future. 2014 Annual Report. Retrieved from https://www.northwell.edu/sites/default/files /NSLIJAR2014.pdf Northwell Health. (2017). Making the impossible possible. 2017 Annual Report. Retrieved from http://onwardpublishing .com/Northwell-Health-Annual-Report-2017/ Ramey, C. (2015, December 29). Long Island Health Network rebrands. The Wall Street Journal Online . Retrieved from https://global-factiva-com.remote.baruch.cuny.edu /ha/default.aspx#./!?&_suid=1532537996442037473092003868214 Case Study 311 CASE STUDIES © Anthony Krikorian/Shutterstock Enhanced Primary Care Roles for Nurses and Other Professionals Betty Rambur OVERVIEW There is a quiet revolution occurring in health care. Behind the swirling, politicized rhetoric on health reform and diverging perceptions about the role of government in health care, substantive and unprecedented changes are creating major shifts in the organization and delivery of services. Fueled by a growing recognition of the impact of social determinants of health and the inherent limitations of the predominant medical model of care, and its related waste, cost, and quality challenges, payment reform is shaping new forms of delivery. A revitalized primary care foundation is essential to the success of these models. This need can be addressed only through revitalized and reconceptualized roles for all health professionals, arguably with the greatest responsibility falling to their largest group, the registered nurses (RNs). Indeed, George Thibault of the Macy Foundation notes: “We simply can’t meet the primary care needs of the nation unless registered nurses are part of the solution, and we must prepare them appropriately and then use them for this role” (2016, p. 6). Most contemporary health professionals, however, have been educated and practice in acute care– centric settings, specialty practices, or singular endeavors such as standalone dental or mental health services. Thus it can be difficult to fully comprehend the societal need for a shift from a specialty- dominant system to one grounded in a broad, firm, primary care base. This transition creates career opportunities, but also, for those unwilling to evolve professionally, potential career threats. Far more important, however, the transition to a strong primary care foundation represents rectification of a costly, flawed, and in some cases fatal U.S. healthcare system. Thus, the transition to a system grounded in primary care is nothing less than a massive reconstitution of service delivery that, optimally, will (continues) 313 CHAPTER 15 OBJECTIVES ■ Describe the economic and ethical forces propelling the need for a stronger primary care foundation for the U.S. health care system. ■ Propose redesigned models of patient care that enhance access to primary care. ■ Describe the relationship between payment reform and enhanced primary care. address foundational defects in the U.S. healthcare system. The flaws in this foundation resulted from early 20th-century educational initiatives that were appropriate for that era, when infectious disease and trauma were leading causes of morbidity and mortality. Early reimbursement models were tied to this orientation. Thus reinforced and fed, a particular type of care emerged as “standard.” It targeted acute and episodic medical interventions, invasive procedures, and pharmaceutical solutions, and it flourished. Yet today health care itself is the third leading cause of death in the U.S. (Makary & Daniel, 2016) and chronic conditions are the prime malady (Centers for Disease Control and Prevention [CDC], 2017). Contemporary challenges include expanding populations with geriatric declines, disabilities, and cognitive impairments; technological innovations that support virtual care; and an epidemic of mental health issues and substance abuse, the later unfortunately fueled by the opioid-prescribing habits of healthcare providers (Barnett, Olenski, & Jena, 2017). And, despite costs roughly double those of 10 other wealthy nations, the United States ranks dead last in outcomes among them (Schneider, Sarnak, Squires, Shah, & Doty, 2017). Healthcare professionals, despite good intentions, are—with the intent of helping—doing harm and costing both taxpayers and families a great deal of money. However, this seemingly grim situation has a silver lining: With awareness of the deep flaws and missteps comes an opportunity to create a healthcare environment that truly heals. Given the magnitude of the problem, informed action toward change should be construed as an ethical imperative, particularly in light of the fundamental moral obligation of any health professional: “do no harm.” OVERVIEW (continued) HOW TO BEGIN An ancient parable offers an exacting vision of why it is so important to understand the bigger picture and context of the work nurses and other professionals are called to do as the nation’s foundation is transformed from an uncoordinated, specialty-centric system to one of primary care: Three laborers are laying brick in exactly the same manner. The first, when asked what she is doing, responds flatly, as it seems obvious to her, “Laying bricks.” The second is asked a similar question and responds, proudly, “Building a wall.” The third, joyfully doing exactly the same task responds, beaming, “Me? I’m building a cathedral!” Similarly, to fully participate as a change agent and leader, it is essential to understand the healthcare ecosystem; how it came to be what it is; how it needs to change, and why; and what personal and professional steps must be undertaken. To be fully relevant to a changing healthcare landscape, nurses and other professionals must be prepared to contribute in fresh ways. This includes new roles, but also those roles and functions that nurses and others are well prepared to execute, but which have not been financially rewarded under the predominant fee-for-service system, and thereby atrophied. In other words, relevance means not only “new” roles, but also “renewed” roles that 314 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals ▸ Why Primary Care? The Case for Change International comparisons illustrate fundamen - tal flaws in the U.S. system of care. The U.S. sys - tem is weighted with specialists; high-performing nations have a greater emphasis on primary care with proportionally fewer specialists. The U.S.

system focuses on medical care; the systems that perform best focus more on determinants of health and social support. They also achieve better outcomes at lower cost. The U.S. system is characterized by waste, and a paradox of over - utilization by some and underutilization by oth - ers (Bodenheimer & Grumbach, 2016). Both overtreatment and undertreatment are fueled by a fee-for-service payment mecha - nism that rewards high volumes of care for those who are insured, even when that care is not ef - fective. In the fee-for-service model, each item, procedure, and intervention is charged and re - imbursed; the more intensive and extensive the care, the greater the compensation. All services, even if unnecessary, ineffective, or actually harm - ful, manifest as revenue for the organization or provider. As a result, overtreatment, overutili - zation, and waste are rampant. New models of care in which nurses coordinate services with others, services aimed directly at health and well-being outcomes, are an exciting, socially important, and ethical approach toward opti - mizing health and containing costs. Strategies will be discussed in detail later in this chap - ter. First, a primer on why this shift is essential. ▸ Overtreatment, Overuse, Waste, and Healthcare Harm Roughly one-third of heathcare is considered to be unnecessary; estimates range from roughly 20% to almost 50% (Berwick & Hackbarth, 2012). Overtreatment is not benign. As noted, health care is the third leading cause of U.S.

deaths (Makary & Daniel, 2016), alarming in and of itself, but even more so when the harm - ful treatment was not needed in the first place.

Unnecessary treatments turn healthy people into victims of the healthcare system. Unnec - essary treatments prolong suffering at our most vulnerable times of existence, including at the end of life. Unnecessary treatments raise ethi - cal issues not only because they extract an emo - tional toll from individuals and families (and in some cases providers), but also because they are related to the ethical principle of justice as fairness originally promulgated by John Rawls (1999, p. 200). Saloner and Daniels (2011) clar - ify the ethical importance of efforts to address healthcare costs; exorbitant healthcare costs are inconsistent with “the social obligation to pro - tect fair equality of opportunity” (p. 816). These authors further note that the disruption to fair - ness exists at both the individual/family level and at the level of the nation. As an example of the former, consider $8,000 in yearly health - care expenses for three families, one who earns $30,000/year, one who earns $90,000/year, and better serve societal health needs. To be fully satisfied when faced with the frustration and ambiguity that necessarily accompanies change, it is helpful for professionals to recognize the profound social significance and importance of the shift to which they are contributing. They should appreciate how their immediate, tangible actions in their local setting are indeed redirecting delivery away from its current mishmash of fragmentation, error, and expense, and toward a genuinely healing healthcare system, analogous to the bricklayer’s cathedral. What follows, therefore, is an overview of the forces that created the U.S. health system, the drivers of the essential corrective shift to primary care, the social and ethical relevance of this shift, and an explication of vital new and renewed roles for nurses and others. Overtreatment, Overuse, Waste, and Healthcare Harm 315 one who earns $250,000/year. These costs erode opportunity in very unequal ways: They devastate the lowest earners, they deeply strain the mid - dle, and they are little more than an annoyance for the highest earner, with minimal impact on otherwise disposable income or lifestyle. At the national level, high costs relative to other coun - tries erode American’s equality of opportunity on the global stage. Unnecessary and wasteful care, while pro - viding revenue for healthcare providers, funnels financial resources away from other social goods and valued options. There is a subtle tragedy in the irony of shifting money away from other so - cial benefits to health care. Social determinants of health—such as education and where you live and work—are the best predictors of health sta - tus. Yet, overspending on health care paradoxi - cally erodes the nation’s capacity to invest in job creation and education, the very antecedents to the social determinants that best create health.

Moreover, the cost of care is also woven into U.S.

goods and products as part of the fringe benefit packages of employers who offer health insur - ance. This, in turn, makes these products more expensive and thus less competitive in the global arena and more expensive at home. And this, in turn, results in more jobs transitioning out of the United States and more imported prod - ucts consumed here. This broad cost impact is complemented by another largely invisible di - vergence of resources close at hand: Americans’ home ownership. Healthcare expenses directly impact current and potential homeowners’ monthly carrying costs, that is, the amount of money needed to pay their mortgages, loan inter - est, insurance, and taxes. Currently, workers pay first, into Medicare, via a payroll tax and general fund taxes, so they thereby support funding of others who are Medicare eligible; next, through state and federal taxes they fund others—those who are on Medicaid; and finally, they fund their own healthcare insurance, either directly out of pocket, or through an individual product on the health insurance exchange (roughly 8% of the population), or as a reduction in real wages by way of their employer-based insurance. They are also providing resources to fund the health care of teachers and other school workers. This is because the cost of health care for teachers is funded largely by property taxes. Compensation packages for teachers and school staff typically include relatively generous health benefits, and teachers are often represented by unions that advocate for higher salaries and benefits for teachers and school staff, including rich health benefit packages with relatively low employee contributions to premiums and low out-of- pocket expenses. And so there is inherent ten - sion between family desire (or need) for low or reduced property taxes and teachers and their unions who negotiate longstanding rich health benefit packages. Thus, although a convoluted path, overtreatment brings about higher prop - erty taxes. In summary, the tentacles of health - care costs grasp the U.S. economic system in both visible and largely cryptic ways. Although many of these economic effects are not easily discernable, it is widely recog - nized that healthcare costs contribute to stag - nant real wage growth in the United States. In other words, Americans are earning more in - come, yet feeling a greater financial pinch: the effect of flat or declining real wage growth. What has all this to do with new primary care roles? It illustrates the urgent need for change, and the broad impacts of the unsustainable status quo.

Clearly, the nation cannot afford such an expen - sive, unevenly effective health system, particu - larly as Baby Boomers march toward Medicare eligibility. Moreover, Medicaid—funded through state and federal taxes—pays for roughly 51% of long-term care services and supports, with other public sources covering an additional 21% (Reaves & Musumeci, 2015). The needs of the aging U.S. population will create unprecedented demands and financial strains on these publi - cally funded segments, which together may in - volve roughly two-thirds of the population in some states. The high cost of these tax-supported systems erodes the nation’s capacity to invest in other social goals, such as defraying the cost of education, even as student debt approaches crisis levels (Friedman, 2017). In summary, the 316 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals emphasis on cost control within entitlement programs such as Medicare and Medicaid of - fers further rationale why the creation of more effective, affordable primary care–centric ap - proaches has become critical.

▸ Support for Value-Based Care as a Bipartisan Approach Fee-for-service reimbursement is now largely recognized as a significant driver of the expen - sive, fragmented, error-ridden U.S. healthcare system, and a shift from the fee-for-service model to value-based care is well underway. The term “value-based care” has become somewhat of a buzzword. After all, who doesn’t support “value"?

Yet, true value-based care is a dramatic depar - ture from the high-volume, low-accountability reimbursement scheme represented by fee- for-service programs. Value-based care actu - ally means both outcome-attentive care and cost-attentive care . Although a plethora of types exist, we can discern two broad categories that reflect these forms of attention. The first is care in which providers accept accountability for re - sults and are financially rewarded for positive measurable outcomes. This includes models in which providers accept “upside-only risk,” which means they receive additional compensation if quality metrics are met and cost of care for a specific population is less than that projected relative to fee-for-service or comparable base - line references. The second is care where pro - viders accept accountability both for outcomes and for cost. In these models, providers are re - warded financially when they achieve measur - able positive outcomes, but docked for care that does not meet defined metrics or is more costly than that projected relative to fee-for-service es - timates or some other standard. This is termed “downside risk” or full risk bearing. Examples of the former include patient-centered medi - cal homes and “upside-only” accountable care organizations (ACOs), while the latter includes bundled payments, risk-bearing ACOs, and all-inclusive total cost-of-care models, some - times termed a global budget. These approaches are referenced, directed, and in some cases driven by measurement. Such capabilities are comparatively new in health care.

They are propelled by—among other things—the Health Information Technology for Economic and Clinical Health Act of 2009, more com - monly known as the HITECH Act. It aimed to modernize health information systems, mean - ingful use initiatives and criteria, and the now ubiquitous employment of electronic health re - cords (EHRs). Reimbursement from payers increasingly requires that outcomes be measured. Primary care nurses can play vital roles that enhance the financial viability and clinical outcome effec - tiveness of practices, provided they understand the changing world of reimbursement that is now tied to cost and quality. For example, the Medicare Access and CHIP Reauthorization Act (MACRA) and its associated Merit-based Incentive Payment System (MIPS) allow two paths to reimbursement for providers who see Medicare patients. Providers must either par - ticipate in a qualified advanced alternative pay - ment model (AAPM) or be subject to MIPS. The AAPM criteria are defined to include down - side risk and the measurement and reporting of outcomes. The AAPM providers receive a 5% bonus payment. If a provider is not in an AAPM, reimbursement is subject to MIPS and based on a composite score in four weighted cate - gories. These are: resource use (cost), quality, clinical practice improvement activities, and meaningful use of EHR technology inclusive of reporting measures of interoperability and information exchange. Over time, weights are expected to shift to place a greater emphasis on cost of care. Under MIPS, reimbursements will increase from +/– 4% in 2018 to +/– 9% by 2022. It is important to note that the aggregate sum among all participants must be budget neutral, which means that roughly half the participants will receive cuts. Although this policy change Support for Value-Based Care as a Bipartisan Approach 317 is directed only toward Medicare at this time, Medicaid and commercial insurance typically follow Medicare’s approaches. Why is this relevant to primary care? For these models to be successful, primary care must play the central role. In summary, pay - ment reform is an essential driver of the pri - mary care movement. As expensive, intensive treatments diminish rather than generate rev - enue, there is new room for the broad, socially based, and minimally invasive primary care in - teractions and interventions nurses can so ably offer. To understand the measurement and re - porting within these payment systems, and to redesign care toward measurable outcomes as well, are vital primary care roles.

The Role of Measurement As illustrated in the example of MACRA and MIPS, the level and influence of measurement are unprecedented and have enormous impact on the viability of the organization. Data-referenced care fueled by payment reform is a stunning re - versal of the long-term status quo. As Kumar and Nash note: “Most physicians practice in a virtually data-free environment, devoid of feedback on the correctness of their practice. They know very lit - tle about the quality and outcomes of their diag - nosis and treatment decisions. And without data indicating that they should change what they’re doing, physicians continue what they’ve been do - ing all along” (2011, para 17). Physician decision making, together with patient preferences and de - mands, drive healthcare delivery and its costs. De - spite good intentions, the systemic result of the interaction of these factors is the overtreatment, high cost, and poor quality previously noted. Arguably, the introduction of outcome metric–referenced payment in healthcare is as radical as the emergence of oxygen in Earth’s at - mosphere once was. Though it was initially a toxin, new forms of life quickly adapted to this new ele - ment, while others diminished or became extinct.

The parallel to health care—both for organiza - tions and professions—should be evident. New primary care roles require a level of data savvy that many professionals may not fully appreciate; yet measurement of outcomes and cost is cen - tral as the nation pivots from fee-for-service to value-based care. So, too, is the need to keep in - dividuals well, to manage chronicity, and—when care is needed—to treat individuals in the most efficient, effective manner. This cannot be done without a robust system of primary care. Profes - sionals, innovators, and entrepreneurs who under - stand emerging economic and social incentives can offer reimagined and redesigned solutions. It is a dramatic departure from “business as usual” and the physician and hospital-centric landscape of the health care of yesteryear.

▸ How Payment Reform Shapes Needs and Opportunities in Primary Care Value-based payments, particularly those that are risk bearing, dramatically change the incen - tives in healthcare from those in “the often an - tiquated fee-for-service model” (Phelps, 2017).

In fee-for-service health care, physicians—and in most cases nurse practitioners and physician assistants—are drivers of revenue production.

Nurses are considered a labor cost in the hos - pital and ambulatory care setting. In addition, in fee-for-service reimbursement, accountabil - ity horizons are also remarkably narrow. Under - standing these differing incentives is essential to a successful shift from specialty-centric to primary care. Contrast the differences between these two scenarios.

Scenario 1A: Traditional Fee-For-Service, Independent Primary Care Provider Oscar is a patient in the primary care office of Dr. Larson. He has occasional checkups and is overweight. On his last visit, at age 36, he is 318 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals diagnosed with type 2 diabetes. Dr. Larson pre - scribes appropriate medications for Oscar and refers him to an endocrinologist and a diabe - tes educator. Oscar nevertheless ends up in the emergency department (ED) with diabetic keto - acidosis. He is capably managed in the ED and referred back to his physician, Dr. Larson. How - ever, Oscar frequently visits the ED on a regu - lar basis with varying medical crises. Note the interactions that generate revenue for the healthcare system: 1. Visits to the primary care provider, Dr. Larson 2. The diabetes educator 3. The endocrinologist—a specialist compensated at a higher rate 4. ED visits 5. Associated lab tests 6. Medications Observe that although each segment of the system is acting appropriately within its defined role, the system still fails to help Oscar. The de - livery model is characterized by accountability horizons that are both very narrow and very short: narrow because they involve one pro - vider at a time, and short because there is only one visit at a time. As long as Oscar is reason - ably insured, he—and the millions like him— generate revenue for the health system and poor health outcomes for the nation.

Scenario 1B: Care in a Risk-Bearing Advanced Alternative Payment Model Instead, imagine that Oscar receives his care through a risk-bearing delivery entity. The pro - vider group accepts overall accountability for the outcomes and cost of care over time . This demands a better understanding of the anteced - ents of Oscar’s illness, his lifestyle and habits, and any potentially modifiable risk factors. The reg - istered nurse, Rosa, is the team member assigned to take the lead and develop a plan with O s c a r. (Note: She does this with Oscar, not for Oscar). While developing a relationship with Oscar, Rosa discovers that he lives alone and frequently pur - chases his dinner at the gas station on the way home from his work as a stonemason. He has no idea how to cook, and has even less interest.

Using motivational interviewing techniques, Rosa uncovers a focal point of enthusiasm in Oscar. His beloved younger sister is planning to wed next summer. He is a groomsman, and would very much like to be thinner for the wed - ding pictures. Rosa suggests a peer coach. Os - car notes that he doesn’t want to work with “one of those buff, gym-rat guys. Those guys are so smug. They make me feel bad.” Rosa concludes that Oscar needs someone with whom he can relate, and suggests Peter. Peter is of similar age, has struggled with his own weight, and is now at a healthy, albeit somewhat generous weight. Rosa accompanies Oscar to make a “warm handoff ” to Peter (See TABLE 15-1 for terms used within the risk-bearing care delivery process). Over time, Peter and Oscar plan a number of sup - portive activities designed to help Oscar make long-lasting lifestyle changes. Peter, for example, organizes a grocery shopping trip with a commu - nity health team peer, and follows with a home visit to demonstrate healthy, easy food prepa - ration. Oscar loses a modest amount of weight and continues to interact with the health team, initially on a weekly basis, then monthly, using a combination of face-to-face, phone, text, and group visit activities and interventions. Oscar eventually has a reasonable weight and healthier lifestyle and he returns to the office on a yearly basis, or if something new arises. Over time, unfortunately, Oscar’s weight creeps up again; at age 47 he is diagnosed with type 2 diabetes during his yearly visit with the nurse practitioner (NP). The NP prescribes ap - propriate medication and reconnects him with a health coach and a diabetes educator, with plans for ongoing follow-up. In doing weekly panel reviews of ED visits, however, Rosa notes that shortly after initial diagnosis and initiation of treatment, Oscar visited the ED presenting with diabetic ketoacidosis. She calls Oscar and he reveals that he is not taking the medication. How Payment Reform Shapes Needs and Opportunities in Primary Care 319 He declines a visit to the primary care office, and offers no reason. He does, however, agree that Peter or Rosa can make a home visit. Rosa mentions that Peter is no longer with the prac - tice, but she would like to visit and see how Os - car is doing. Oscar agrees. During the home visit, Oscar admits that he has returned to his gas station grocery shopping.

Rosa uncovers three additional health-impeding factors. First, his beloved sister has moved across the country. Oscar states, “I didn’t realize how much I depended on her. I really miss her.” In addition, Oscar is afraid to take the medication prescribed for his diabetes. A close childhood friend died of insulin shock when he was 11 and the death continues to haunt him. Also, he is not enthusiastic about lifestyle changes. “Last time I was really motivated... I wanted to be buff for the wedding. I don’t have so much to look for - ward to now.” Finally, his sister’s move, coupled with the diagnosis of diabetes, has spiraled him into “feeling blue.” He shares that he can’t stop thinking about death and feels very anxious; this nearly immobilizes him. Rosa concludes that Oscar is at high risk and that the magni - tude and nature of his problems are beyond her scope of practice and expertise. She talks with Oscar about a visit with the physician and per - haps with a psych-mental health NP, as well as a social worker. He declines. Rosa asks about the ED visit, and Oscar remarks that he feels com - fortable going there, but did not enjoy feeling so out of control. Rosa suggests that they take steps to prevent such feelings, and Oscar agrees to a second visit from her. In preparation, Rosa brings Oscar’s story to the health team’s weekly case review meeting. In developing a plan, the team considers the significant facts. First, Oscar has a longstand - ing relationship of trust with Rosa. She needs to remain a key point of contact and care co - ordinator, until or unless a trust rappport with another team member eclipses their relation - ship. Next, Rosa needs substantial additional support beyond her scope for Oscar’s health needs, particularly the recent mental health is - sues and the poorly managed chronic condition.

Finally, there are complex, interacting factors at play in the manifestation of Oscar’s diabetes.

Given his unwillingness to visit the office, or to have visits from anyone other than Rosa at his home, the team decides to offer a telehealth TABLE 15-1 Terms Used in Advanced Primary Care Term Definition Warm handoff “A warm handoff is a transfer of care between two members of the health care team, where the handoff occurs in front of the patient and family.

This transparent handoff of care allows patients and families to hear what is being said and engages patients and families in communication, giving them the opportunity to clarify or correct information or ask questions about their care (Agency for Health Research and Quality, n.d.). Evidence suggests that this approach facilitates the initiation of behavior change services such as, for example, enrollment in a smoking cessation program (Richter et al., 2012) or behavioral health services. Job embeddedness Job embeddedness theory posits that people stay in work positions when they are embedded. Aspects include: (1) perceived links to other people, teams, and groups; (2) a sense of fit between themselves, their job, their organization, and community; and (3) a belief they would experience loss or sacrifice if they left their job (Mitchell, Holtom, Lee, Sablynski, & Erez, 2001). 320 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals home visit, with the primary care physician and psych-mental health nurse practitioner on - site at the primary care office while Rosa joins Oscar in his home. Oscar agrees. During this visit, Oscar reveals a bit more about his unwillingness to visit the clinic. He admits that he can no longer drive his pickup truck, following an accident in which he drove into a tree. He sheepishly adds that he didn’t call the police or try to claim insurance because he had "a drink or two before driving.” Using tech - niques of screening and brief intervention in pri - mary care settings (Fleming, 2004/2005), and approaches described in Screening, Brief In - tervention and Referral to Treatment (SBIRT) (Substance Abuse and Mental Health Services Administration, n.d), a more complex pattern emerges. Oscar experiences loneliness and per - haps depression; substance dependency, if not abuse; and limited current capacity to meet some basic needs, such as transportation. Oscar agrees that he needs help, and even requests it, and he may be willing to see whomever Rosa recom - mends. The physician, psych-mental health NP, Rosa, and Oscar develop a joint plan, based on realistic options and Oscar’s interests, starting with an Uber/Lyft or taxi to the health team paid for by the provider group. Several contrasting points are evident in these two scenarios. In the second, the account - ability horizon is not episodic, it is temporal; it stretches across time. And, although the emer - gence of diabetes was not prevented in this sce - nario, it manifested over a decade later than in the first scenario. In other words, health pro - motion may not prevent the development of chronic conditions, but it can delay its onset and reduce related morbidity and even early mortal - ity. Next, development of trust and relationship are critical and organizations are well advised to cultivate role commitment and organizational embeddedness (refer back to Table 15-1) among their employees (see TABLE 15-2 for additional key orientations and skills of primary care nurses). TABLE 15-2 Essential Orientations and Skills of Primary Care Nurses Orientation/Skill Definition Upstream thinking and action The ability to consider all antecedents to an acute or chronic condition and act to modify conditions toward health. Considerations include economic, social, educational, and spatial factors in the home, community, region, or nation, as well as personal factors such as lifestyle habits, choices, and family dynamics.

Actions may be at the level of social policy change, the community level (for example, working with town council and school districts to support creation of safe bike/walking paths to school as a childhood obesity prevention strategy), or directly with the family or individual. Upstream action directed at individuals and families require skills, first of assessment of readiness for lifestyle/behavioral changes, and next, motivational interviewing skills. Readiness for behav - ioral change Prochaska and DiClemente’s (1983) classic transtheoretical model for stages of change toward health behavior is a well-established, useful guide that recognizes that behavioral change is difficult and does not represent a single discrete event. Instead, they posit five interacting, dynamic states:

precontempletation, contemplation, preparation, action, and maintenance.

Empirical studies have found that an individual often recycles these behaviors before they cease, for example, addictive behavior (Prochaska, DiClemente, & Norcross, 1992). (continues) How Payment Reform Shapes Needs and Opportunities in Primary Care 321 Orientation/Skill Definition The primary care RN needs different tactics at the different stages. In precontemplation, the individual may (or may not) wish to change the behavior, but does not yet have serious intent to do so. Although the individual recognizes the behavior, it is not seen as a problem. This period is associated with self-deception and other behaviors to minimize the problem.

In the contemplation stage, the patient recognizes the problem and is con - sidering change, while recognizing the amount of “effort, energy, and loss it will take” (Prochaska, DiClemente, & Norcross, 1992, p. 1103). In the prepara - tion state, intention to change begins to be combined with preparation for action or small changes in the problematic behavior.

In the action stage there is visible effort and alternation of behavior. Although action includes visible effort, it is not synonymous with change; instead, “sig - nificant and overt efforts to change are the hallmarks of action” (Prochaska, DiClemente, & Norcross, 1992, p. 1004).

Finally, maintenance, the prevention of relapses and continuing improve - ment. Maintenance implies a steady state. This, however, is not the case.

Instead, it is a continuance of the change process, and it also needs ongoing support. Clearly, recommending smoking cessation classes for someone in the precontemplation stage, for example, is not a successful strategy. Motiva - tional interviewing can help determine what is important to an individual, as a sound platform toward change. Motivational interviewing Motivational interviewing respects that a patient’s timeline and interests may not coincide with providers’ views and values. It is a counseling style, an approach that identifies things that are important to a person, such as the example of the wedding of Oscar’s sister. Successful approaches are not limited to face-to-face contact, but also include home telehealth (Battaglia et al., 2016) and telephone calls. The Cochrane review of 28 studies on the use of motivational interviewing for smoking cessation found motivational interviewing conducted by nurses and counselors to be more effective when the sessions were brief (less than 20 minutes) rather than longer, and a single session to be marginally more effective than multiple contacts. There was no difference in face-to-face versus telephone approaches, and both were more successful than brief advice or routine care (Lindson-Hawley, Thompson, & Begh, 2015). A second review of 14 studies found motivational interviewing to positively influence changes in eating among people with type 2 diabetes (Ekong & Kavookjian, 2015). Motivational interviewing is a foundational nurs - ing skill. The primary care RN can also support the development of motiva - tional interviewing skills among health coaches. TABLE 15-2 Essential O rientations and Skills of Primary Care Nurses (continued) 322 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals Orientation/Skill Definition Leading, following, and coordinating teams Multifactorial approaches to health care require a broad range of skills and aptitudes that no single discipline can fully master. This is particularly apt in the era of specializations. Consider, for example, a pediatric surgeon who spe - cializes in repair of blunt abdominal trauma. This highly refined skill set is life - saving for the few children who need this sort of care. The surgeon, as skilled as she or he is in this one particular area, is likely to be poorly prepared to deal with the same child’s development of juvenile myoclonic epilepsy. The neurologist who is prepared for the medical management of epilepsy may be poorly prepared for dealing with the child’s shame and embarrassment after a seizure in the school cafeteria.

Fortunately, there are generalists who are licensed to practice across the array of settings where individuals live, work, and play who are knowledgeable in the full spectrum of health and illness. These are the baccalaureate-prepared registered nurses. Social workers offer comple - mentary skills, with great understanding of family systems and, in general, less preparation with disease management and medications. Family prac - tice physicians, nurse practitioners, and physician assistants are prepared as generalists, but with a pronounced socialization in the medical model of treatment of disease. Thus, the RN—often in concert with a social worker—is in an ideal situation to coordinate care, lead teams when nec - essary, and provide supportive followership as appropriate. All members of the team should be prepared to both lead and follow. Team members must first understand their own strengths, potential contributions, and weaknesses, and seek peers to complement their talents and bridge their gaps. Panel management, directed at both individual and the panel population Although the terms care management or case management are often used, it may be more useful to conceptualize the needed skill set as panel management directed at both the individual and the panel population.

Various practices may organize the overall panel in varying manners. A large practice many have a primary care nurse who monitors all superutilizers of health care in their practice, or may disaggregate these by chief medical complaint (for example, congestive heart failure, diabetes, etc.) and thus provide a consistent level of support for individuals with the condition. It is important to note that the expertise needed is not merely with the disease state. Rather, it is experience in support of those individuals, with their own self-management as an optimal goal. Nurses in such roles will work with those who support information technology to use clinical and claims data for predictive analytics and, optimally, prescriptive analytics. Use of clinical data can predict, with 70% accuracy, which patients will have a health event long before they reach the level of decline that enables detection in the clinical setting. The addition of claims data increases that predictive capacity to 90% (Culver, 2015).

How Payment Reform Shapes Needs and Opportunities in Primary Care 323 Arguably, if Peter—the health coach with whom Oscar had previously bonded—were still in the practice, Oscar might have been more willing or forthcoming about his circumstances. Fortu - nately, he had a good relationship with another longstanding team member, Rosa. Finally, the team is a unit that provides care, not an individ - ual provider, and no one member of the team has greater power or authority than any other.

Each scenario requires an appropriate combi - nation of professionals. Note, in these examples, the traditional “medical intervention” of a pre - scription for medication and “diabetes education” are not sufficient to address Oscar’s challenges.

▸ What Skills Do Nurses Need in These Advanced Primary Care Settings? Our previous example illustrates individual care that was spurred through Rosa’s review of ED visits among her panel of patients, or her patient population. Primary care is indeed directed to - ward population health; it is thus very important that the nurse and other providers understand the concept of population health and how it dif - fers from public health. Kindig and Stoddard’s (2003) broadly cited definition of population health is “the health outcomes of a group of in - dividuals, including the distribution of such outcomes within the group” (p. 381, emphasis added). By contrast, public health is defined by the American Public Health Association (APHA; n.d.) this way: “Public health promotes and pro - tects the health of people and the communities where they live, learn, work and play. While a doctor treats people who are sick, those of us working in public health try to prevent people from getting sick or injured in the first place. We also promote wellness by encouraging healthy behaviors” ( para 1, 2 ). Public health oversight is also a vital role of government. Clearly, although noting some overlap, the emphasis on outcomes is an essential at - tribute that defines population health. This in - cludes not only health outcomes, but also cost effectiveness and overall value. Thus the nurse must understand exactly what metrics are used to measure their practice and how they relate to compensation. It also requires a broad and sys - tematic understanding of the interactions that create these outcomes, since outcomes reflect determinants beyond traditional medical care and even public health. Essential determinants include both the social environment—aspects such as employment status, social support, in - come, education, and culture—and the physical environment, whose aspects consist of both the natural and the built landscape, and include wa - ter, air quality, and urban design. Both factors interact with a third: personal elements such as genetics and behavior. Obviously these interac - tions are complex and may multiply and cascade.

Nurses and other professionals need to be able to discern and act on “upstream” factors to halt any cascade that fuels morbidity and mortality.

As illustrated in Oscar’s case, this is much more complicated than simple, reductionalistic medi - cal care that is focused on biomedical models of disease. It is also much more realistic and aligned with the real, whole lives that people lead. It is also ever so much more interesting! Upstream thinking is a foundational primary health skill. Manchanda and Hochman (2014) define upstreamists as “health professionals who are equipped to transform their health care sys - tem and the social and environmental condi - tions that make people sick” (p. 1553, emphasis added). They further note that they must have a passion for social justice, but, importantly, must put that passion to action in the routine prac - tice of care to include assessment of social deter - minants. Assessment is indeed a necessary first step, but it must be followed by action. This is a new order, and a tall one, for health professionals—including physicians—who have traditionally been educated in silos and practice in them. Because no single discipline has the pre - requisite skills and knowledge in this vast and 324 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals profound landscape, it takes a team. Yet the team is a strategy toward an end—individual and pop - ulation health—not an end in and of itself. Hi - erarchical models in which the physician is the “captain of the ship” are destined to fail. They create tremendous burnout for the physician who is attempting to manage the kaleidoscope of interacting aspects that need to be addressed in these comprehensive models of care. Physi - cian-centric care has been empirically identi - fied as a barrier to development of advanced models of primary care such as patient-centered medical homes (Nutting, Crabtree, & McDan - iel, 2012). These authors also cite unimagina - tive use of nurse practitioners and physician assistants as yet another barrier. Although not specifically noted, an even stronger case can be writ large for the unimaginative use of nurses. For nurses, this critical social action lays the foundation for truly differentiated prac - tice. Associate degree nurses may continue to be prepared for acute and episodic care, but bac - calaureate nurses must complement these skills with those needed in advanced primary care models: upstream thinking and action, measure - ment referenced strategies, health promotion, management of chronicity, motivational inter - viewing, and identifying markers of readiness for behavior change; leading, following, and co - ordinating teams; and panel management to di - rect both individual and aggregated strategies (see Table 15-2 for working definitions, then re - view Oscar’s second scenario to see how many of these elements you can identify).

Upstream Thinking and Action Karen Hein, MD, former Executive Director of the Institute of Medicine, states: “Whatever clinical problem you’re focusing on, it’s only one or two steps away from one of the ‘social deter - minants’ of health that account for nearly 90% of premature mortality” (personal communi - cation, August 5, 2017). She notes, for exam - ple, the commonly used marker of blood sugar control familiar to all clinicians and many pa - tients: HbA1c. Yet, hitting the mark on HbA1c is influenced by transportation access, medica - tions, health beliefs, exercise, nutrition, educa - tion, income, and physical environment. They all relate, and actually contribute, to this seem - ingly “medical-only” blood test. Upstream think - ing must be accompanied by new approaches to health promotion, prevention of illness, and management of chronic conditions, and to us - ing panel management for data referenced care.

Scenario 2: Panel Review as a Vital Skill In reviewing her panel of patients, Rosa notes that 11-year-old Marco has had three ED visits in the past 2 weeks, and a pattern of increasing visits over the past 6 months or so. A detailed review of Marco’s record reveals that these are very serious health events, with extreme respi - ratory distress. Rosa immediately calls Marco’s mother and learns from her that he has repeat - edly been seen in the emergency department suffering from uncontrolled asthma. In further discussion, it seems clear to Rosa that he is adhering to his medication regimen.

Rosa probes possible school-related stress, bul - lying, or other factors that may be contributing to the escalation of Marco’s symptoms. Marco’s mother shares that she thinks school is going well. Marco has friends and is a steady student.

“Actually,” his mother notes with astonishment, “Marco’s asthma may be worse at home!” Rosa askes about any recent changes. Rosa’s experi - ence with the family suggests that they function very well, so new family stressors do not seem to be a triggering factor. The parents have also followed instructions about limiting allergens in the home, with one exception. Although the be - loved family dog, Rufus, remains in the house, he no longer sleeps with Marco. Rosa offers a visit while Marco is at home. Marco’s mother eagerly agrees. Visiting the home, Rosa immediately iden - tifies a serious environmental trigger. The house smells musty and there is evidence of massive water stains and mold. The parents reveal that What Skills Do Nurses Need in These Advanced Primary Care Settings? 325 they purposely bought the house as a “fixer up - per” about 8 months ago, and they are indeed addressing these problems, but can do so only as financial resources permit. Marco’s mother notes: “I actually never thought that Marco has been worse since we moved into this house . . .

we were so happy to finally be out of that ter - rible apartment.” Rosa recognizes a teachable moment and, fortuitously, had previously developed materi - als directed at the most common conditions in her patient panel: congestive heart failure, ar - thritis, diabetes, and asthma. She downloads the material on mold, dust, and mite-induced allergies and asthma and texts it to Marco and his mother. “Wow,” Marco reacts, “those dust mites are really gross. I guess I will clean my room, Mom!” After reviewing the material and discussing questions, they agree that new strat - egies to reduce mold, mites, dust, and mildew needed to be implemented until the building problems can be fully addressed. These include more frequent washing of bedsheets and hypo - allergenic bedding, improved household airflow using exhaust fans, redirecting rainwater flow away from the house, and removal of the most obvious sources of dampness. Notably, the leaks are the worst in Marco’s room, and the family is committed to address - ing them first, yet recognize it will be some time before they have the resources to address all the household mold. Marco is adamant about stay - ing in his bedroom at night, even though he understands this may be triggering asthma at - tacks, but commits to doing his homework in the well-ventilated kitchen. In the interim, in addition to the previously adopted strategies, Rosa suggests that Marco’s asthma could po - tentially be improved with air conditioning to minimize particulate-induced episodes and a dehumidifier during humid months. Marco’s mother states: “We can swing the new bedding and a few fans, but we really can’t afford an air conditioner and a dehumidifier right now.” For - tunately, the provider organization funds such items when the family truly hasn’t the means to afford them. This is in the best interest of the organization as well as Marco’s, because the pro - vider organization is responsible for all cost of care and the investment is nominal when com - pared to even a single ED visit. Following im - plementation of these steps, Marco’s condition is ameliorated, and there are only two flair-ups over the next 6 months. The family prioritizes renovation of Marco’s bedroom, and once this is complete he has no further episodes. Note that the salutary intervention in Mar - co’s care was not medication or hospitalization, but environmental modification. To assess and redirect the environment toward health are ideal roles for primary care nurses. Moreover, they are firmly in keeping with nursing’s long legacy of “environment” as one of its core con - cepts. Modern professional nursing is rooted in care that is data driven toward environmen - tal modification. Florence Nightingale, the mother of modern professional nursing, worked with injured soldiers during the Crimean War.

There she used statistics as an early means of measurement-referenced care, and recognized the role of the unsanitary hospital environment as a principal contributor to mortality. Improve - ments in hygiene, light, ventilation, and related factors resulted in a dramatic reduction in post- trauma deaths of wounded soldiers. The value of Nightingale’s approach is apparent in Marco’s case. As she wrote of the environment, there are “internal and external elements of nature that can be altered to foster human health. Proper use of fresh air, light, warmth, cleanliness, quiet, proper food, all at least expense of vital powers of the patient” (1860, p. 3). Nightingale’s can - ons include elements evident in Marco’s care:

ventilation and warmth; light, cleanliness of rooms and walls; and health of houses, beds, and bedding. Clearly, environmental modification as primary care nursing skill is not a “new” nurs - ing skill, but a renewed one. Similarly, “hous - ing as health care” (Doran, Misa, & Shah, 2013, p. 2374) is critical and may seem like a fresh approach. Yet, such broad upstream thinking is inherent in the true heart of nursing and in early nurses’ initiatives such as the Henry Street 326 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals Settlement. These efforts have renewed value in our era and are an essential element of contem - porary primary care. Finally, Marco’s scenario demonstrates one other element of upstream thinking: the value of preparing materials in advance to be used when a family is ripe to hear them. The stages of behavioral change theory (Prochaska, DiClemente, & Norcross, 1992) are a helpful reminder that individuals become ready for be - havioral change in their own time frame, not that of a clinic or office visit. Materials pro - vided in the office at the time of a visit may not even make it out of the family car, much less into implementation, and this may be one of the reasons that counseling and education is so low on the health impact pyramid (see FIGURE 15-1). Multimedia materials, including videos and podcasts prepared in advance and delivered at the ripe moment, when individu - als and families are taking action rather than merely contemplating change, can enhance ef - fectiveness. Organization, preparation, and de - livery of such materials, geared appropriately for each specific generation, and reflective of the broad array of human orientations, are es - sential. Every person and family—regardless of race, gender, sexual orientation, ethnicity, or religion—should be able to recognize them - selves in the materials prepared. The message is more likely to resonate if and when the indi - vidual can identify with the messenger. Thus, an array of packaging of the same content, yet tailored to the recipient, is essential. Artful and imaginative preparation of these materials is an important primary care role. Next, not all FIGURE 15-1 The Health Impact Pyramid Reproduced from Frieden, T. (2010). A framework for public health action: The health impact pyramid. American Journal of Public Health, 100 (4), 590-595.DOI:10.2105/AJPH.2009.185652. Counseling and education Clinical inte rventions Long-lasting pr otectiv e inte rventions Changing the cont ext to make individuals' defa ult decisions health y Socioeconomic f actors Incr easing population impact Increasing individual effo rt needed What Skills Do Nurses Need in These Advanced Primary Care Settings? 327 necessary primary care interventions occur outside the more traditionally defined prac - tice setting, as we see in the case of Heather.

Scenario 3: The Case of Heather, the Walk-In Patient Today, Rosa is focused on health management of individuals visiting the primary care office.

In this role, she also performs triage of both phone calls and walk-ins. Heather, a “walk in,” has never been seen before in the office. She is a pleasant, attractive, fashionably dressed, and impeccably coifed 19-year-old who presents with an enlarged salivary gland that she states has been present for a month. Heather is very concerned that the mass is affecting her appear - ance and would like it removed or somehow oth - erwise addressed. “I’m really here for a referral to a surgeon. I want this gone!” Other than a low body mass index, the remainder of Heath - er’s exam is normal. Rosa is uneasy about the presentation, however, and rather than sched - uling a later appointment with a primary care provider in her setting or referring Heather to an otolaryngologist, she pulls the medical doctor (MD) and nurse practitioner (NP) aside. “Some - thing is off here,” says Rosa. “I know it can likely wait, but my gut tells me something is up and if she leaves she won’t come back.” The MD, a 69-year-old male, and the NP, a 37-year-old fe - male, both have great respect for Rosa’s judge - ment. “How far behind are you?” asks the MD of the NP. He remarks, “We should do this. Are you OK with it? Go for it, and if you need me let me know. I can see her, but you are better with young people than I am. I can help you catch up at the end of the day if needed.” The NP agrees to see Heather without delay. This trust and division of labor is illustrative of a highly functioning team. As this example portrays, the NP and MD have somewhat dif - ferentiated their practices by interests and devel - oped corollary expertise. The MD sees more of the elderly diabetics and congestive health fail - ure patients and has a special interest in hospice and palliative care. The NP has a special interest in adolescent and women’s health. After hear - ing Rosa’s description of Heather, she remarks that she suspects salivary gland enlargement secondary to anorexia and/or bulimia may be the etiology of the enlargement. During the history and exam, the NP works to establish a connection with Heather.

In their conversation, Heather admits a relent - less need to exercise and be ever thinner. “I’m so fat right now I can barely stand myself,” she states, demonstrating a distorted body image, given that her concern is counter to a clear and objective underweight condition. The NP sug - gests that the nutritionist may be able to help, and also that there is another clinician in the office who works with people concerned about their weight. “Anything to lose weight,” says Heather.

A warm handoff is made to the nutritionist and the psychiatric-mental health nurse practitioner in turn, both of whose expertise includes eating disorders. During this interval, the NP discusses the case with the physician, who recalls that sal - ivary gland enlargement can persist even after a return to normal weight. Together they do a quick literature review, and find that individuals with eating disorders are very attentive to their appearance and thus may consult about facial swelling without sharing their eating patterns or other social and emotional stressors; further, a focus on only the salivary gland enlargement may lead to unnecessary procedures and delay in appropriate treatment (Walsch, Croft, & Katz, 1981). Heather’s primary concern is her appear - ance and the team knows they must start from this concern, because it is what is important to Heather. They explain to Heather that the sali - vary gland that concerns her is likely a symptom of disturbed eating habits, and this motivates her to begin to address her nutritional behavior. It is a long road to recovery and the salivary gland, for now, is being observed with watchful waiting. This scenario once again demonstrates the teamwork and upstream thinking so essential for today’s primary care team. It also demon - strates that Rosa does not need to know ev - erything. Indeed, no one does and no one can.

Rosa’s key skill in this scenario is her ability to 328 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals trust her sense of unease. Something didn’t feel right. In traditional fee-for-service models fo - cused on the 15-minute visit with its associated charge, referral to a surgeon would have moved things along. The patient would have received what she thought she wanted. The surgeon might also have performed surgery, a comparatively expensive approach that, in this example, fails to address the root cause of Heather’s health challenges. In models where providers are ac - countable for the cost and outcomes of care over time, it is essential to first identify, and then ad - dress these root causes. Even if Heather even - tually does have surgical removal of the gland, the more important underlying causes will have been recognized and, we hope, addressed over time. Without such efforts, Heather will con - tinue to present with an array of health-related problems. These may stretch over time , for ex - ample, in osteoporosis induced by low body weight in her sixth or seventh decade of life. The accountability horizon in these new models of care is indeed broad, for it encompasses many disciplines and approaches, and long, since it covers years or even decades. What an exciting time to be a health professional!

Health Promotion Revitalized These examples illustrate the new, more robust approach to health promotion. Nurses have typically been involved with health promotion activities (e.g., smoking cessation, blood pres - sure screening, and referrals), but they have not been uniformly involved in tailored ap - proaches, using claims and clinical data, that address specific determinants within particu - lar individuals or populations. General infor - mation on health-promoting strategies is not sufficient, and perhaps not even fully useful, as identified in the CDC health impact pyramid mentioned earlier. Friedman (2010) notes that among five broad strategies listed in Figure 15-1, counseling and education, followed by clini - cal interventions, have the least health impact.

It is noteworthy that the traditional healthcare system has focused on the two strategies with the least impact. So, too, professional education has concentrated on the two upper strata of the pyramid, the least impactful pair. Revamping education so that its impact comes to the fore - ground as an element of the pyramid’s base is an important endeavor.

▸ Nursing Education Why Have There Been So Few Nurses in Primary Care?

Much of health care as it is known today is the result of historical flukes and unintended con - sequences, both positive and untoward, which, taken as a whole, have created a disproportion - ally intensivist, specialized, acute care–centric system. Yet, as noted, the evidence is very clear that nations with more primary care and less specialist involvement have better health out - comes at lower cost. Further, nations that spend more on social supports and less on medical care have better outcomes at lower cost. How did the United States get it all wrong? At the beginning of the 20th century, health care looked dramatically different than today.

Physicians were largely prepared through ap - prenticeship with others; there was little stan - dardization in their education. They were poorly compensated, and relied on bartering and how much families could afford to pay them.

By and large, they were not a highly compen - sated or respected segment of society. Similarly, hospitals—far from the medical industrial com - plexes of today—were not the venue of choice for care. Instead, home was the healing haven, while hospitals were reserved for those not wanted at home or without a home in which to heal: those with infectious diseases, the unmanageably “in - sane,” and the homeless (Sultz &Young, 2011).

Abraham Flexner and the Flexner Report Abraham Flexner, an influential educational reformer, who among other notable efforts Nursing Education 329 brought Albert Einstein to Princeton Univer - sity, was commissioned by the Carnegie Foun - dation to study medical education and make recommendations to improve the quality of physician training. Initiated by the American Medical Association’s voiced concern about the varying routes to becoming a physician and the divergence of standards and quality that resulted, this educational reform was also likely to have been rooted in organized medicine’s desire for greater social authority (Group & Roberts, 2001; Starr, 1982). Flexner was deeply influenced by the hyper-rational approach of the Germans and the scientific biomedical model he saw at Johns Hopkins (Duffy, 2011). The recommendations he promulgated became the criteria for medi - cal schools. The result was closure of 80% of the schools, which offered what we now call “com - plementary and alternative” training (Stahnisch & Verhoef, 2012)—likely because they were “alternative” to the “standard” model envisioned by Flexner. It also resulted in the closure of most schools that prepared people of color (Harley, 2006) and women. There was a virtual absence of women in the physician workforce until the 1970s (Barkin, Fuentes-Afflick, Brosco, & Tuch - man, 2010). Medical education became more expensive and more white, with a socioeco - nomic schism that favored admission to those from more affluent families (Prislin, Saultz, & Geyman, 2010), a challenge that is still reflected in the ongoing U.S. struggle to create a profes - sional health workforce that mirrors the popu - lation it serves. These authors also note that the Flexner report spurred physician specialization rather than the primary care base exemplified in other high-performing nations and, according to Duffy (2011), encouraged a scientific orien - tation not counterbalanced with an equal drive toward excellence in caring. Medicine also carved an expansive scope of practice (Group & Roberts, 2001). Nurses, if educated at all, were trained in hospitals with entry-level services similar to those of a maid.

To this day, nursing care remains bundled into hospital charges in the same manner maid ser - vices are bundled into those of a hotel. Early schools of nursing were owned and operated by hospitals, with nursing students providing an unpaid labor force. Practice experiences re - flected the various units of a hospital: medi - cal, surgical, obstetrics, and pediatrics. Over time, in baccalaureate programs, a single com - munity health course would come to augment these acute care–centric student learning experi - ences. Some such courses were focused on pub - lic health, while others concentrated on nursing care of individuals and families outside the hos - pital, even though hospitals are actually part of a community. Still others were an amalgamation of both of these orientations. In summary, nurs - ing programs adopted the medical model pro - mulgated by the Flexner report; for many years the licensing exam of the National Council of State Boards of Nursing, the exam designed to test for competency as a strategy to protect the public, actually named licensing exam sections after these hospital units. Thus, it is unremarkable that nursing edu - cation has been focused on acute care. Contem - porary faculty have a tremendous opportunity to shape the overall conceptual orientation of novices by what they do and do not include in a course, and they can shape foreground and background considerations by what titles they give to courses. Consider, for example, the dif - ferent representations invoked by a course called “Med-Surg Nursing” versus one called “Manag - ing Chronicity Across Care Settings." Arguably, no area of nursing education is more in need of reform than “Foundations of Nursing.” Former “foundations” of nursing such as bed-making and other custodial care tasks, for example, gener - ally are not performed by RNs, nor should they be, except perhaps in the care of the critically ill.

Initial role socialization can instead teach stu - dent RNs these skills within the realistic con - text of their oversight of nursing assistants and others, those who actually do make beds. True foundational skills include care management across transitions, motivational interviewing that reflects readiness to change, and understand - ing and using data to drive care. Use of data in - cludes the critique of evidence for application in 330 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals practice, an essential baccalaureate skill (Amer - ican Association of College of Nursing, 2008) currently taught in contemporary programs.

This orientation should be enhanced with skill acquisition in the use of individual and panel costs and outcome data for strategic interven - tions. As illustrated in Oscar’s scenarios earlier in the chapter, these data-inspired interventions can address the immediate situation, and they should also treat modifiable upstream anteced - ents that are illustrated in all three scenarios.

Finally, payment shapes delivery, and payment reflects policy and policy changes. Thus, under - standing the organization, financing, and pol - icy of health care is a critical foundational skill, not a leadership skill, and should be introduced early in the curriculum and reinforced through - out the program. The magnitude of such a shift is profoundly at variance with the education of most faculty and the experience of many. It may therefore be important for programs in nursing to totally re - direct their curricular design away from reduc - tionalistic, Flexner-shaped terms and orientations such as “medical-surgical nursing” or “care of the individual with mental health issues” in or - der to prevent reflexive recreation of their own educational experiences.

▸ Mental Health As two of the scenarios illustrated, mental health issues are an integral part of the manifestation of disease and illness. So, too, must primary health care include mental health services as an inte - gral part of their practice. Nurses with interest and expertise in this domain can complement the background of other professionals who are part of the setting. More complicated scenarios, particular those that necessitate pharmacother - apies, may require the expertise of a psychiatric nurse practitioner or psychiatrist. Social work - ers can provide beneficial support and interven - tions at the level of the family or individual, and clinical psychologists offer yet another comple - mentary skill set. It has been documented that the warm handoff that directly links an individ - ual to a provider or service, as illustrated in both Heather’s and Oscar’s scenarios, can facilitate the initiation of behavior change services such as, for example, enrollment in a smoking ces - sation program (Richter et al., 2012). There are also well-established screening tools that are ap - propriate for the primary care setting, for exam - ple, the Patient Health Questionnaire (PHQ)-2 and PHQ-9 for depression screening, General - ized Anxiety Disorder (GAD)-7 for anxiety, and the Alcohol Use Disorders Identification Test (AUDIT-C) for alcohol abuse (Drake & Valen - stein, 2015). Primary care providers should re - view and be prepared to use these tools and have clearly identified pathways that assure segue to follow-up that patients are not prepared to ac - cess by themselves.

▸ Dental Care The mouth contributes to the overall health of the body. As providers take accountability for the outcomes and cost of care it becomes increas - ingly vital that oral care be integrated into the overall primary care approach. Although this is evident in some Federally Qualified Health Centers, most primary care offices have largely left dental care to solo dentist practices. Den - tists have not been subject to the same cost and outcome accountability as physicians and oth - ers, and they currently have less incentive to participate in emerging delivery models. Gaps in oral care manifest far removed from the den - tist, for example, in hospital emergency rooms, or—for the poor and uninsured—in uncompen - sated care for dental surgeries. Changes in state regulations to allow den - tal hygienists to provide their full scope of care to patients—while referring to a dentist when necessary—would provide a valuable contri - bution to primary care and our nation’s health.

The scope of practice of dental hygienists varies by state, and expanded scopes have been asso - ciated with positive and significant population health improvements; the more autonomous Dental Care 331 they are, the better the oral health of the pop - ulace (Langelier, Continelli, Moore, Baker, & Surdu, 2016). These population-level metrics are of vital significance for advanced primary care models that assume accountability for the health of a given population, and they are even more important if they are taking responsibility for outcomes and overall cost of care over time. Moreover, more than 50 countries and four U.S. states allow a “midlevel” practitioner with more preparation than dental hygienists, while less than dentists, to offer preventative and restorative treatment. Although these have primarily been in the public health sector (Koppleman, Vitzthum, & Simon, 2016), the model offers an exciting way for advanced primary care to incorporate badly needed dental services in their portfolio.

The evidence supports their safety and effec - tiveness. Koppelman et al. (2016) conclude that they “may thrive in a climate where providers must deliver on access and outcomes” (p. 2205) by offering perfect alignment with the goals and orientation of advanced primary care. Yet, as Mertz (2016) powerfully notes: “It remains unclear whether twenty-first-century dental sci - ence, information technology, interprofessional practice, and population health needs can be mounted onto the current nineteenth-century dental care delivery model. At stake is whether reform efforts will lead to a reduction in dis - parities and the widespread incidence of dental disease, or whether those efforts will maintain a system in which poor oral health serves as a primary marker of social inequality for the next generation of Americans” (p. 2168). Primary care leadership can close this gap.

▸ Conclusion When atomic energy was first discovered, Ein - stein famously said: “Everything has changed but the way we think,” which reflected the power, potential, and danger of the atomic age. The responsibility that accompanies this power is an ethical obligation to protect the safety and well-being of society though new, more comprehensive ways of thinking and acting. Similarly, we now have irrefutable ev - idence that our healthcare system is deficient, unevenly distributed, and often dangerous. The evidence clarifies healthcare’s financial drain on our nation and its families, and the impact of this drain on the very social determinants that best predict health status. Professions exist to service the public and must evolve to serve the public welfare. Rede - sign toward primary care is not merely a move - ment or a clever approach by which to capture new markets. Rather, it represents a fresh cre - ation of the very fabrication of a healthcare de - livery system that is safe, cost effective, and sustainable. Each of us has a role to play in lay - ing the granite blocks of this citadel—the health - care system we wish to inhabit throughout our lives, and bequeath to the next generations. The time to act is now.

Discussion Questions 1. Enhanced primary care requires highly effective teams. What roles would you play on the team? How do you describe your contributions to your teammates? How should your performance be measured?

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International Jour nal of Psychiatry Medicine, 11 (3), 255–261. 334 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals CASE STUDIES CASE STUDY Mending the Patchwork of NP Regulations Nancy Rudner, Graduate Faculty, George Washington University Purpose/Scope Identify issues and strategies for nurse practitioners’ (NPs’) full practice authority.

Background Nurse practitioners (NPs) must meet the national certification and educational requirements established by the profession. Yet the regulation of health professions is a state function. The rationale for state regulation is the state role in ensuring safety for its residents, based on the premise that consumers cannot assess healthcare provider quality. This has created a wide variation in state regulations of advanced practice nurses.

In some states, NPs practice to the full extent of their education, as a professional with full practice authority (FPA). In other states, NPs are required to have a supervising physician and/or work under a physician for a prescribed number of months.

In some states, NPs are limited in what they can prescribe, and cannot order physical therapy or sign certain documents requiring a provider authorization. Physician resistance to expanding NP practice authority is rooted in physician dominance in health care. Physicians were the first health profession to codify healthcare practitioner requirements. In 1760, New York City barred unlicensed physicians from practicing. By the early 1900s, every state had a medical practice act, broadly defining the practice of medicine to encompass all aspects of the human body and mind (Safriet, 1994, 2002; Starr, 1982). Other healing professions, including nursing, had to carve out space to practice around the broad scope of medicine. In the mid-1900s, nursing licensure laws developed, defining the profession with limited functions. The primary independent nursing functions were observation, task completion, and record keeping. Other functions were delegated from the physician. Blood pressure assessment was not considered a nursing function, but instead, was a medical task delegated by the physician.

Variability and Evolution of State Regulations of NPs Since the development and expansion of the NP role, each state has updated their nurse practice acts to recognize the advanced practice nurse role. However, NP scope of practice and autonomy varies widely among the states.

This variability was found to persist in several studies (Kuo, Loresto, Round, & Goodwin, 2013; Rudner, O’Grady, Hodnicki, & Hanson, 2007). NP regulations tend to be more consumer friendly when the Board of Nursing has sole authority for NP regulatory oversight, not shared with another profession (Rudner, O’Grady, Hodniki, & Hansen, 2010). FIGURE 15-2 and TABLE 15-3 show NP regulations also are more consumer friendly in states that have more equalitarian views of women, as reflected in the state’s approval of women’s equality in the Equal Rights Amendment (Rudner, 2016). The National Council of State Boards of Nursing (NCSBN) now maintain maps and data showing NP regulatory status in each state (NCSBN, 2017), looking at two core components of NP practice: authority to practice independent of another profession and the authority to prescribe medications (FIGURE 15-3). As states have considered revisions to NP regulations, physician groups have often raised strong concerns about safety and quality, seeing NPs only as members of a physician-led care team (American Academy of Family Physicians, 2013, 2014; American Academy of Pediatrics, 2016).

Over 50 years of evidence support the safety and quality of NPs (Horrocks, Anderson, & Salisbury, 2002; Laurant et al., 2005; Newhouse et al., 2011; Office of Program Policy Analysis and Government Accountability, 2010; Office of Technology Assessment, 1981, 1986; Oliver, Pennington, Revelle, & Rantz, 2014; Perloff, DesRoches, & Buerhaus, 2016; Stanik-Hutt et al., 2013; Swan, Ferguson, Chang, Larson, & Smaldone, 2015). The National Council of State Boards of Nursing (NCSBN) developed a consensus document among nursing stakeholders, reflecting Case Study 335 CASE STUDIES agreement on core principles of NP regulations (NCSBN, 2008). Based on this consensus, NCSBN prepared a model act for NP regulation, toward harmonizing regulations of NPs among the states (NCSBN, 2012) and a toolkit for modernizing state regulations (NCSBN, n.d.). Expanding NP roles was among the key recommendations in the 2010 The Future of Nursing: Leading Change, Advancing Health report and recommendations by the highly esteemed Institute of Medicine (IOM, 2010). That report recommended the removal of scope of practice barriers and called FIGURE 15-2 Percentage of states with full practice authority for nurse practitioners by state ERA vote (1998, 2012, 2014) Online journal of issues in nursing by American Nurses Association Reproduced with permission of American Nurses Association in the format Book via Copyright Clearance Center. 0% 10% 20% 30% 40% 50% 60% 16% 32% 47% 10% 40% 53% 20% 27% 0% 1 998* 2012** 2015 * Pe rcentage of stat es with full practice author ity fo r nurse practitioners, 1 998, 2012, 20 14, by state ERA vo te All states (n=50) ERA-suppor ting stat es (n=30) ERA -opposing stat es (n=20) TABLE 15-3 Percentage of States with Full NP Practice, with Prescribing, in ERA-Supporting and ERA-Opposing States (1998, 2012, 2015) States Nurse Practitioners (NPs)* Nurse Midwives (CNMs)** Nurse Anestheticists (CRNAs)* Clinical Nurse Specialists (CNSs) All states (n 5 50) 20 (40%) 20 (40%) 19 (38%) 17 (34%) ERA supporting (n 5 30) 16 (53%) 17 (57%) 15 (50%) 13 (43%) ERA opposing (n 5 20) 4 (20%) 3 (15%) 4 (20%) 4 (20%) *p , 0.05; **p , 0.01 Online journal of issues in nursing by American Nurses Association Reproduced with permission of American Nurses Association in the format Book via Copyright Clearance Center.

336 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals CASE STUDIES for full deployment of nurses, nurses working at the “top of their license” in order to meet the needs of patients and the needs of the healthcare system. AARP, representing seniors, supported the IOM recommendations for the future of nursing, including full practice authority of NPs through its Center to Champion Nursing in America campaign (AARP, 2016). Additionally, the National Governors Association published a report calling for broader practice authority for NPs (National Governors Association, 2012).

Florida Florida’s regulations of NPs have consistently lagged behind most of the states. Until 2016, Florida was one of the only states where NPs could not prescribed controlled medications, such as cough medication with codeine as well as some seizure and pain medications. Several NP groups advocated for modernizing the regulations, but their disjointed efforts were not successful against the well-organized and well-funded resistance from state physician groups. The groups formed an NP coalition to focus their strategies and advocate with a united voice.

The NPs worked to change the regulations so that NPs could prescribe all medications a patient may need, sign death certificates, and order involuntary confinement for mental illness. In 2010, the state legislature’s Office of Program Policy Analysis and Government Accountability (OPPAGA) produced a study showing cost savings to be gained by expanding the scope of practice for NPs, physician assistants, and dental hygienists (OPPAGA, 2010).

Florida Tax Watch also supported lifting the restrictions on NPs as an avenue to improve the efficiency of tax dollars. Two strong champions in the state legislature helped move NP-favorable bills forward. Former emergency medicine physician and state FIGURE 15-3 NCSBN consensus model map Reproduced from NCSBN. (2017). Implementation status map. Retrieved from https://www.ncsbn.org/5397.htm AK HI CNMIGU Points indicate the extent of alignment with consensus mode l components, based on 28 point scoring. VI AS WA ID MT WY CO ND MN IA MO AR LA MS AL GA FL NJ DE MD SC NC TN KY IN IL WI MI OH WV PA VA NY ME VT NH MA CT RI SD NEKS OK TX NM AZ UT NV OR CA DC 1 4-20 points 50-71% 21 -27 points 75-96% 28 points - 1 00% Less than 14 points Case Study 337 CASE STUDIES Representative Cary Pigman served on the Health Quality Subcommittee. He spoke intensely and frequently on the absurdity of the limitations on NP practice. State Senator Denise Grimsley, RN, sponsored legislation to modernize the NP regulations. Organized medicine claimed NPs were not safe to perform these acts, and that they lacked the education that physicians have. The nurses achieved some victories in the 2015 and 2016 sessions. The legislature approved changes to allow NPs to prescribe most schedule 3 to 5 medications and a 7-day supply of schedule 2 medications (such as codeine for pain). Psychiatric NPs were given authority to order involuntary confinement for mental illness. The authority for NPs to sign death certificates did not pass. The NP Coalition is now focusing on full practice authority (FPA), removing the requirements for physician supervision.

Summary In spite of over 50 years of evidence showing the safety and quality of NPs, NP regulations vary across the states. Florida nurses’ attempts to modernize its NP regulations for specific acts, such as prescribing controlled substances and signing death certificates, were supported by several non-nursing groups. They achieved partial success, gaining the ability to prescribe some controlled substances as needed. This study examines background, contributing factors, and strategies to achieve harmonization among state regulations so that NPs can practice to the full extent of their education and abilities.

Case Study Questions 1. Examine the map of state regulations (NCSBN, 2017). What are some reasons for the variability? In what ways does gender play a role? What role does evidence play?

What other factors influence NP regulations?

What patterns do you see? Why do you think Massachusetts and Illinois score lower than their neighboring states? Why do the Western states score higher? 2. What are the benefits and disadvantages of pursuing legal authority for specific functions, such as ordering physical therapy, prescribing controlled substances, or signing death certificates? Should prescriptive authority for controlled substances have been the focus on NPs efforts? What other aspects of NP regulations might they have focused on? Would it be more effective for advocates to focus on removing physician supervision? What is the impact on the art of advance practice nursing when an NP is supervised by a physician? 3. Look at the literature regarding NP scope of practice and regulations. What studies are needed? The ranking of NP regulations by Rudner, O’Grady, Hodnicki, and Hansen (2007) looked at how regulations affected consumer access. Why look at the consumer perspective? What role does evidence play in determining policy? 4. The “silver tsunami” of aging Baby Boomers, increases in chronic disease, and new models of healthcare delivery are all factors calling for new approaches to care. What can NPs contribute to a new model of care to reflect the unique, valuable contribution of nursing? Propose a model of care to address an issue. What enabling legislation would be needed to make this viable? Consider a range of aspects, including access, staffing, financing, reimbursement, and quality. 5. Look at the NP regulations in your state and the NP policy activities of your state nurses association and other nursing groups. What are the pros and cons of the current regulations? What needs to be changed? What approaches do you think would be most effective? The Florida case shows alliances with multiple non- nursing organizations. What agencies and organizations might be allies in your state to improve nursing practice? References AARP. (2016). Campaign for action . Retrieved from https:// campaignforaction.org/ American Academy of Family Physicians (AAFP). (2013). Guidelines on the supervision of certified nurse midwives, nurse practitioners, and physician assistants. Retrieved from http:// www.aafp.org/about/policies/all/guidelinesnurses.html American Academy of Family Physicians (AAFP). (2014). Nurse practitioners. Retrieved from http://www.aafp .org/about/policies/all/nursepractitioners.html American Academy of Pediatrics (AAP) (2016, February). AAP publications reaffirmed or retired. Pediatrics, 137 (2). Retrieved from http://pediatrics.aappublications.org /content/137/2/e20154272 338 Chapter 15 Enhanced Primary Care Roles for Nurses and Other Professionals CASE STUDIES Federal Trade Commission. (2014). Policy perspectives: Competition and the regulation of advanced practice nurses. Retrieved from www.ftc.gov/policy/reports /policy-reports/commission-and-staff-reports Horrocks, S., Anderson, E., & Salisbury, C. (2002). Systematic review of whether nurse practitioners working in primary care can provide equivalent care to doctors. British Medical Journal, 324, 819–823. Institute of Medicine. (2010). The future of nursing: Leading change, advancing health. Washington, DC: National Academies Press. Retrieved from http://www.nap.edu/catalog/12956 /the-future-of-nursingleading-change-advancing-health Kuo, Y., Loresto, F., Round, L., & Goodwin, J. (2013). States with the least restrictive regulations experienced the largest increase in patients seen by nurse practitioners. Health Affairs, 32 (7), 1236–1243. doi:10.1377/hlthaff.2013.0072 Laurant, M., Reeves, D., Hermens, R., Braspenning, J., Grol, R., & Sibbald, B. (2005). Substitution of doctors by nurses in primary care. Cochrane Database System Review , CD001271. National Council of State Boards of Nursing (NCSBN). (2008). Consensus model for APRN regulation: Licensure, accreditation, certification & education. Retrieved from https://www.ncsbn.org/Consensus_Model_for_APRN _Regulation_July_2008.pdf National Council of State Boards of Nursing (NCSBN). (2012). 2012 Model Act. Retrieved from https://www.ncsbn .org/2012_APRN_Model_and_Rules.pdf National Council of State Boards of Nursing (NCSBN). (2017). Implementation status map: Consensus model implementation status. Retrieved from https://www .ncsbn.org/5397.htm National Council of State Boards of Nursing (NCSBN). (n.d.). APRN consensus model toolkit. Retrieved from https:// www.ncsbn.org/739.htm National Governors Association (NGA). (2012). The role of nurse practitioners in meeting increasing demand for primary care. Washington, DC: Author. Retrieved from www.nga .org/cms/home/nga-center-for-best-practices/center -publications/page-healthpublications/col2-content /main-content-list/the-role-of-nurse-practitioners.html Newhouse, R., Stanik-Hutt, J., White, K., Johantgen, M., Bass, E., & Zangaro, G.. . .Weiner, J. (2011, September-October). Advanced practice nurse outcomes 1990–2008: A systematic review. Nursing Economics, 29 (5), 230–250; quiz 251. Office of Program Policy Analysis and Government Accountability (OPPAGA). (2010). Expanding scope of practice for advanced registered nurse p ractitioners, physician assistants, optometrists, and dental hygienists. Retrieved from https://www.floridanurse.org/ARNPCorner /ARNPDocs/OPPAGAScopeofPracticeMemo.pdf Office of Technology Assessment. (1981). The costs and effectiveness of nurse practition ers. Washington, DC: U.S. Government Printing Office. Office of Technology Assessment. (1986). Nurse practitioners, physician assistants, and certified nurse-midwives: A policy analysis . Washington, DC: U.S. Government Printing Office. Oliver, G., Pennington, L., Revelle, S., & Rantz, M. (2014). Impact of nurse practitioners on health outcomes of Medicare and Medicaid patients. Nursing Outlook, 62 (6), 440–444. Perloff, J., DesRoches, C., & Buerhaus, P. (2016). Comparing the cost of care provided to Medicare beneficiaries assigned to primary care nurse practitioners and physicians. Health Services Research. 51(4), 1407–1423. doi:10.1111/1475-6773.12425 Rudner, N. R. (2016, May). Full practice authority for advanced practice registered nurses is a gender issue. Online Journal of Issues in Nursing, 21 (2). Retrieved from http:// nursingworld.org/MainMenuCategories/ANAMarketplace /ANAPeriodicals/OJIN/TableofContents/Vol-21-2016 /No2-May-2016/Articles-Previous-Topics/Full-Practice -Authority-for-APRN.html Rudner, N., O’Grady, E., Hodnicki, D., & Hanson, C. (2007). Ranking state NP regulation: Practice environment and consumer health care choice. American Journal of Nurse Practitioners, 11 (4), 8–24. Rudner, N., O’Grady, E., Hodnicki, D., & Hanson, C. (2010). Are regulations more consumer-friendly when boards of nursing are the sole regulators of nurse practitioners? Journal of Professional Nursing, 26 (1), 29–34. doi: 10.1016/j. profnurs.2009.09.001 Safriet, B. (1994). Impediments to progress in health care workforce policy: License and practice laws. Inquiry, 31(3), 310–317. Safriet, B. (2002). Closing the gap between can and may in health care providers’ scopes of practice: A primer for policy makers. Yale Journal on Regulation, 19 (2), 301–334. Stanik-Hutt, J., Newhouse, R., White, K., Johantgen, M., Bass, E., & Zangaro, G.. . . Weiner, J. (2013). The quality and effectiveness of care provided by nurse practitioners. Journal for Nurse Practitioners , 9(8), 492–500. Retrieved from http://www .npjournal.org/article/S1555-4155(13)00410-8/fulltext Starr, P. (1982). The social transformation of American medicine. New York, NY: Basic Books. Swan, M., Ferguson, S., Chang, A., Larson, E., & Smaldone, A. (2015). Quality of primary care by advanced practice nurses: A systematic review. International Journal for Quality in Health Care, 27 (5), 396–404. doi:10.1093 /intqhc/mzv054 Case Study 339 CASE STUDIES © Anthony Krikorian/Shutterstock Physicians: It Is Increasingly about the Team Nancy Aries and Barbara Caress OBJECTIVES ■ Describe both the centrality and limits of physicians in defining how the health system functions. ■ Distinguish how changes in physician practice impact healthcare access, healthcare costs, and healthcare quality. ■ Identify how the Affordable Care Act (ACA) and other changes to the organization and financing of care have already influenced physician practice. OVERVIEW The role of physicians and how they practice is at a crossroads. Health care is achieving greater collaboration between providers and the organizations where they work. This dynamic has resulted from two underlying changes. First, the dominance of the biomedical model, which focused on the treatment of acute conditions, is giving way to a comprehensive and continuous model of care embedded in the context of patients’ lives—the social determinants of health. Second is the use of financial and outcomes data to validate improved quality and lower costs. The increasing role of collaborative, team-based care impacts the autonomy of physicians and possibly the doctor–patient relationship. While physicians are still dictating how to treat patients, their role must be understood within the context of a comprehensive system of care that they no longer fully control. This chapter will describe how physician practice is changing as the healthcare system changes. We conclude with a consideration of how health policy impacts the doctor–patient relationship. 341 CHAPTER 16 ▸ Medical Professionalism The pace of change in the delivery of health care is quickening. Increasingly we hear stories about physicians whose treatment of complex, chronic conditions based on standard practice might be out of step with evidence-based, cur - rent treatment protocols. Patient behavior and interaction are recognized as playing a key role in the effectiveness of any treatment. Not only are patients and their families important, but so is the team of clinicians including nurses, nutri - tionists, physical therapists, and social workers who support patients across time. Several years ago, stories like Lia Lee’s seemed frustratingly normative (Fadiman, 1997). Lia was a young Hmong woman diagnosed with epilepsy before her first birthday. Lia’s family had recently immigrated to the United States.

They barely spoke English and were unfamil - iar with Western medical practice. Lia’s condi - tion was tenuous. Her medication regimen was complex and constantly changing, given the dif - ficulty doctors had controlling the disease. Her parents’ failure to adhere to the regimen led one physician to report her family to Child Protec - tive Services. As a result, Lia was placed in fos - ter care. Although the foster family was loving and followed the prescribed medical regimen, the placement was exceptionally stressful for Lia.

She was returned home following her parents’ agreement to comply with the doctors’ orders, but her condition deteriorated. Lia continued having seizures until one seizure, a grand mal, did not stop. Lia was taken to the hospital, where doc - tors found her in septic shock. They were able to stop the seizures and cure the sepsis, but Lia was brain dead. For the next 26 years, she lived at home, comatose (Fox, 2012). Although Lia’s story can be told as a story of medical noncompliance, that is too simple an explanation for her brain death. Lia’s par - ents, recently arrived Hmong refugees, spoke practically no English. The first times they took Lia to the emergency department there were no interpreters who spoke Hmong; thus, her condi - tion was misdiagnosed. A correct diagnosis was not made until Lia arrived at the emergency room during an epileptic seizure. With limited means of communication, there was no way to bridge what the doctors understood to be a disease best managed with anticonvulsant medications and her parents’ belief that Lia’s soul needed to be brought back to her body. Each acted in good faith. Each cared for Lia’s well-being. Lia’s med - ications were changed 23 times over 4 years in an attempt to stabilize her condition. The Lees engaged a shaman to treat her soul, which they thought was being hurt by her medications. The divide between the two practices resulted in what her doctors considered her death on the night of her grand mal seizure. In retrospect, every - one involved agreed that adherence to what was perceived as the best possible treatment regi - men for epilepsy most likely resulted in a worse outcome than would have happened if the doc - tors and Lia’s parents jointly devised a plan that would accommodate the two differing cultural ideas about her disease and her care. Today, there is a growing movement to em - bed the principles of collaborative, team-based care in the practice of medicine. What started as lone voices and singular stories being told about physicians who worked closely with other health professionals in the delivery of complex care is becoming increasingly embedded in the institu - tions that oversee the organization and delivery of services. The Commonwealth Fund’s website has a section titled “Case Studies” that focuses on individual strategies for the better provision of patient-centered care, often for high-need and high-cost patients (The Commonwealth Fund, n.d.). Starting in 2009, the associations represent - ing six heathcare disciplines (medicine, osteo - pathic medicine, dentistry, nursing, pharmacy, and public health) joined forces to identify a com - mon core of competencies and learning experi - ences that would lead to improved team-based care (Interprofessional Education Collabora - tive, 2011). In 2015, the Institute of Medicine’s report, Measuring the Impact of Interprofessional Education on Collaborative Practice and Patient 342 Chapter 16 Physicians: It Is Increasingly About The Team Outcomes (2015) further advanced the signifi - cance of the issue for policymakers. In this chapter, we examine the role of phy - sicians in a system that is capable of providing high-quality care but often fails to meet the pa - tient’s needs. To do so, the chapter is organized in three parts. We begin by explaining who makes up the physician labor force, where physicians practice, and whether the physician supply is ad - equate to meet patient demand. In the second part, we consider how physician practices are or - ganized and financed, and the ways health pol - icy reform is pushing physicians to practice in more coordinated and collaborative ways. The last section addresses the problem of medical er - rors to demonstrate how the healthcare delivery systems can undermine the best intents of those who practice medicine. We conclude by consid - ering the impacts of a collaborative, team-based approach on the doctor–patient relationship.

▸ Physician Supply: Who Are the Doctors? There are just over 1 million physicians in the United States (National Center for Health Sta - tistics [NCHS], 2016). Is this enough to meet healthcare needs in the United States? This ques - tion has long been debated. The first part of the answer relies on the demand for services. There has been a steady increase in demand for physi - cian care going back to the post–World War II era. This can be attributed to four primary fac - tors. First is population growth. There are now more than 318 million Americans, and the el - derly, an ever-greater percentage of the popu - lation, utilizes health services most intensely (NCHS, 2016). Second is the increasing per - centage of the population with chronic condi - tions ranging from asthma, to diabetes, to heart disease that requires the ongoing involvement of healthcare providers (NCHS, 2016). Third is technological innovation that, in the long run, tends to increase the demand for services (Cal - lahan, 2008). Last is increased affordability of health insurance that has increased access to and utilization of health services. Health in - surance became widely available with the pro - vision of employer-based insurance post World War II. The enactment of Medicaid and Medi - care in 1965 expanded access to the elderly and poor. Implementation of the Affordable Care Act (ACA) in 2014 extended health insurance to an additional 25.6 million persons who enrolled in the ACA Marketplace or as part of the Medicaid expansion (Kaiser Family Foundation, 2017). As the demand for medical care has in - creased, there has been a steady increase in the both the supply of physicians and the physician-to-population ratio. As TABLE 16-1 indi - cates, the number of active physicians increased from 219,900 in 1950 to 860,939 in 2015. More important, the ratio of active physicians to pop - ulation increased in that time period from 14.9 to 37.3 per 10,000. As the demand for medical care increased, medical schools increased class size and 40 new medical schools were built be - tween 1960 and 1980. The result was that the number of graduates more than doubled from 7,000 to 16,000 by 1980 (Ludmerer, 1999). Be - tween 2002 and 2016 there was another upswing in the founding of new medical schools. The current number stands at 146, and additional schools are in the planning phase (American As - sociation of Medical Colleges [AAMC], 2016b).

Between the continued increase in class size of established medical schools and the addition of new schools, the number of admitted medical students continues to rise, which has increased the overall number of physicians and physician- to-population ratios (Young et al., 2015). The supply of physicians is not solely de - pendent on educated American physicians. As of 2014, 23% of licensed physicians were inter - national medical graduates (IMGs) (Young et al., 2015). Just over 10% of the IMGs are U.S. citizens who studied abroad. The rest are foreign nationals who predominantly come from India, the Phil - ippines, Mexico, and Korea. They complete their postgraduate training as interns and residents in the United States because there are more residency slots than there are American-trained physicians Physician Supply: Who Are the Doctors? 343 to fill them. The impact of the increased number of medical school graduates on the availability of residency slots for IMGs is not known. If the number of residencies remains constant, there would be less need to rely on educated foreign physicians. One result might be greater compe - tition for residencies and doctors considering a broader range of practice options. However, new funding for postgraduate training through pro - visions in the ACA and other federal and state agencies could widen the gap with the result be - ing the admission of more IMGs and a smaller deficit in underserved areas (Mullan, Salsberg, & Weider, 2015).

Physician Characteristics: Race, Ethnicity, and Gender The profession of medicine has become more di - verse than it was in 1960 when 97% of doctors were white, and 93% were men. While the med - ical profession better represents the diversity of the society it serves, it masks the continued un - derrepresentation of blacks and Hispanics. De - spite efforts to recruit underrepresented minorities to medical schools, the percentage of underrep - resented minority physicians remains largely unchanged (American Association of Medical Colleges, 2014). An examination of medical school enrollments provides a window into the changes that can be expected in the workforce as a whole. One impact of the Civil Rights Movement was pressure on medical schools to integrate their classes and thus increase overall black enroll - ment. In 1970, there were only 697 black first-year medical students, 6% of the total ( TABLE 16-2). Most of these students attended Howard Univer - sity College of Medicine and Meharry Medical College, the two largest, historically black med - ical schools. In 1995 to 1996, black enrollment hit TABLE 16-1 Number of Active Physicians and Medical Schools, 1950–2015 Year Number of Active Physicians (MD and DO) Active Physicians/10,000 Population Number of Medical Schools (MD) 1950 219,900 14.9 79 1960 247,257 14.8 86 1970 310,845 16.0 103 1980 414,916 20.2 125 1990 547,310 22.0 125 2000 692,368 25.8 124 2010 794,862 27.2 135 2015 860,939 37.3 146 MD = medical doctor; DO = doctor of osteopathic medicine.Sources: Data from Statista. (n.d.). Statistics & facts on U.S. physicians/doctors. Retrieved from https://www.statista.com/topics/1244/physicians/ National Center for Health Statistics (NCHS). (2016). Health, United States, 2015: With special feature on racial and ethnic health disparities; Tables 83, 84, and 88. Retrieved from https://www.cdc.gov/nchs/data/hus/hus15.pdfAmerican Association of Medical Colleges (AAMC). (2016b). Results of the 2015 Medical School Enrollment Survey . 344 Chapter 16 Physicians: It Is Increasingly About The Team TABLE 16-2 Minority and Women’s First-Year Medical School Enrollment: 1960–2012 Academic Year Medical School First-Year Enrollment Total Black First-Year Enrollment Hispanic First-Year Enrollment Asian First-Year Enrollment Female First-Year Enrollment Number Percentage Number Percentage Number Percentage Number Percentage 1960–1961 8,069 – – – – – – – – 1970-1971 11,348 697 6.1 100 0.9 – – 1,228 11.0 1980-1981 17,186 1,128 6.6 818 4.8 572 3.3 4,757 28.7 1990-1991 16,876 1,263 7.5 933 5.5 2,527 15.0 6,550 38.8 1995-1996 17,058 1,519 8.9 1209 7.0 3,046 17.9 6,941 42.7 2000-2001 16,699 1,243 7.4 1022 6.1 3,265 19.6 7,472 45.0 2010-2011 19,082 1,174 6.1 1,612 8.4 4,315 22.6 8,756 46.9 2011-2012 19,947 1,182 5.9 1,707 8.5 4,442 22.2 9,037 47.0 Source:

Data from Association of American Medical Colleges (AAMC). (2014).

Diversity in the physician workforce: Facts & figures 2014 ; Tables 4, 5, 9.

Retrieved from https://www.aamc.org/data/workforce/reports/439214 /workforcediversity.html Physician Supply: Who Are the Doctors? 345 its peak at 9% when there were 1,525 first-year black medical students. Since that year, both the number and percentage of first-year black enroll - ees has dropped. In 2011 to 2012, the last year reported by the American Association of Med - ical Colleges, only 1,182 blacks were enrolled in a class of 19,947 students, making up 6% of the class. More distressing is the situation of black males. The number of first-year black male ma - triculates reached a high in 1978 at 542. In 2014 to 2015 there were only 515 (Thompson, 2015).

The situation for Hispanics is slightly better, as the number of first-year enrollees continues to rise although the percentage has remained fairly flat given increasing large first-year classes. In 2011 to 2012 there were 1,707 Hispanics in the first- year class, representing 8.5% of the total. Asians have seen the greatest gains in medical school enrollment. In 2011 to 2012 Asians comprised 22% of the first-year class. The large increase in Asian enrollment has resulted a decline in the percentage of white medical school students, who now comprise only 63% of the medical school class, but their overall number has grown. Women have fared much better than un - derrepresented minorities regarding medical school enrollment. Women are close to par - ity in medical school enrollments. They make up almost 50% of the entering classes. Gender parity in medical school enrollment brings us closer to gender parity in medical practice. In 1970, there were just over 25,000 active women physicians. By 2010, women comprised almost 30% of the physician labor force (Young et al., 2015). Black women have already reached and exceeded parity. Fifty-five percent of active black physicians in 2013 were women (American As - sociation of Medical Colleges, 2014). The diversity of the physician work force is important for reasons ranging from larger social concerns for social equity to specific concerns about the delivery of care. Minority physicians increase access to health services because black and Hispanic physicians are more likely to prac - tice in underserved minority communities and rural area communities (American Association of Medical Colleges, 2014). Minority physicians have also been found to provide more culturally appropriate care (Ansell & McDonald, 2015).

In addition , they advance medical research by exploring issues that are not always seen by the white majority. Women’s participation in the physician labor force is equally important be - cause women are more likely than men to en - gage in primary care practice (Kane, 2015) where there are the most severe physician shortages (IHS Markit, 2017).

Physician Practice Characteristics: Medical Specialization and Geographic Location There is an unequal distribution of physicians by medical specialty and geographic location that results in limited patient access to services.

Good primary care is critical to good health, but there is continued shortage of primary care phy - sicians (American Academy of Family Physicians [AAFP], 2014). Although more physicians are being trained, the proportion that choose pri - mary care has not increased (Goodfellow et al., 2016). The shortage of primary care physicians is expected to become even greater as the popu - lation ages and more individuals possibly have access to health insurance. Already in short supply, it is projected that there will be a 17% increase in the demand, with only an 11% in - crease in the supply for primary care physicians between 2013 and 2025 (NCHS, 2016). There is also an unequal distribution of physicians across geographic areas. The Bureau of Health Professions estimated that 20% of the population lives in areas that are designated as medically underserved based on the availability of primary care physicians (Rosenbaum, Jones, Shin & Ku, 2009). In 2010, there were 84 pri - mary care physicians per 100,000 in urban areas but only 68 per 100,000 persons in rural areas (Petterson, Phillips, Bazemore, & Koinis, 2013).

Despite the higher ratio of primary care physi - cians in urban areas, low-income communities 346 Chapter 16 Physicians: It Is Increasingly About The Team can be medically underserved. East Harlem, a New York City neighborhood in northern Man - hattan, is designated as medically underserved despite one academic medical center being lo - cated at the community’s edge and two others within 2 miles (Health Resources and Services Administration [HRSA], 2017). Rural and low-income, inner-city commu - nities find it hard to attract primary care physi - cians for several reasons (Council on Graduate Medical Education [COGME], 2017). The most common is the highly specialized nature of medical training. Residencies in primary care go unfilled while there is an excess demand for hospital-based residencies in subspecialties. Phy - sicians find fewer opportunities to practice the type of medicine for which they were trained in these communities. Physicians’ decisions are also influenced by high student loan debt, sub - stantial differentials in the salaries of primary and specialty care doctors, and lifestyle choices (COGME, 2017). There have been long-standing efforts to increase the number of physicians going into primary care specialties and underserved areas.

In the 1960s, a new specialty in family practice medicine was developed that provided advanced residency training. The number of family prac - tice residents has returned to the levels reached in 1998, while the percentage of internal medi - cine residents who intend to become primary care practitioners has dropped precipitously (AAFP, n.d.; Committee on the Governance and Financing of Graduate Medical Education, Board on Health Care Services, & Institute of Medicine, 2014). The National Health Service Corps, begun as part of the 1960s War on Pov - erty, provided loan forgiveness to doctors who practiced in rural and later urban medically un - derserved areas. The program was successful but was largely disassembled during the Rea - gan administration (Sardell, 1988). As more tightly managed care took hold in the 1990s, federal and state policies helped promote a rapid increase in the number of primary care physicians over the decade (Bodenheimer & Pham, 2010). More recently, several features of the ACA support primary care physicians and those working in underserved communities (Klink, 2015). These include increased fund - ing for the National Health Service Corps, de - creased fees on medical school loan repayment, and increased funding for graduate medical ed - ucation (GME) in community-based ambula - tory care settings (COGME, 2017).

Physician Income Physicians have the highest median income of all occupational groups in the United States (Bureau of Labor Statistics [BLS], 2017). This does not seem intuitively obvious when one thinks about corporate executives whose salaries soared into the tens of millions of dollars, but in 1999, phy - sicians and dentists were the only occupational groups to have median incomes above $100,000 (Weinberg, 2004). Physicians are also among the occupation groups with the greatest range in earnings. In 2017 physician-reported aver - age income was $294,000, but the average in - come for specialists was 46% greater than for primary care physicians ($316,000 vs. $217,000) (Grisham, 2017). The average income for men was 35% greater than for women. Among spe - cialists, men earned $345,000 versus women who earned $251,000. For primary care physicians, the gap was only 16%. The top earning special - ties were orthopedics, plastic surgery, and car - diology, whose average incomes ranged from $410,000 to $489,000. The lowest earning spe - cialties were family medicine ($209,000) and pediatrics ($202,000). There are also income disparities by race and ethnicity. White physi - cians earned on average $303,000; Asian phy - sicians earned $283,000, Hispanic physicians earned $271,000, and black physicians earned $262,000. Little known is that physicians in the United States were the second most highly paid medical practitioners in the world as of 2010, following behind the Netherlands. On aver - age, U.S. physicians earn three times what their counterparts working in countries belonging to the Organisation for Economic Co-operation and Development earn (Conover, 2013).

Physician Supply: Who Are the Doctors? 347 The Adequacy of the Physician Supply The question remains: Will the physician sup - ply be adequate? There is a wide divergence re - garding the extent of the problem based on the assumptions built into the predictive models about the ways healthcare delivery will be or - ganized (Salsberg, 2015). The greater the reli - ance on physicians as primary care providers, the higher the ratio of physicians to population needed. Inversely, the greater the role of alterna - tive practitioners, the lower the ratio needed to provide primary care in medically underserved areas (Bodenheimer & Bauer, 2016). The Asso - ciation of American Medical Colleges (AAMC) reports that the shortfall in 2025 will range from 34,600 to 82,600 physicians depending on the organizational model used to make projections (IHS Markit, 2017). The report notes that this is substantially lower than the AAMC’s projec - tion made 1 year earlier that put the shortfall between 61,700 to 94,700 physicians. The larger problem, however, is that med - ical training does not align as well as it should with the needs of those seeking care. Medical practice is heavily grounded in the biomedi - cal sciences. This is a necessary component of medical education, but not a sufficient one for a healthcare system where population health is a starting point for practitioners to engage with the needs of individual patients in a more ho - listic way (Grover, Orlowski, & Erikson, 2016).

Knowing this does not change the fact that most medical training occurs inside the hos - pital where patients are being treated for com - plex conditions. Training is limited in clinical settings where most care is delivered. This cre - ates the disjunction between GME and the need to educate physicians to prepare to practice in community-based settings where most Amer - icans obtain care (Institute of Medicine, 2014).

The challenge is to bring the physician supply in equilibrium with demand for services consist - ent with a population-based approach to care.

This calls for change in the organization and fi - nancing of GME (American Academy of Family Physicians, 2014; COGME, 2017; Committee on the Governance and Financing of Graduate Medical Education, Board on Health Care Ser - vices, & Institute of Medicine, 2014; Jackson et  al., 2014; U.S. Government Accounting Of - fice [GAO], 2016).

▸ How Are Physicians Practices Organized and Reimbursed? Where physicians practice, the organizations of these practices, and the ways physicians are compensated, are rapidly changing. The basic issue is to how best to provide integrated and continuous cases, such as received by patients whose narratives The Commonwealth Fund publicizes. It is argued that improved health outcomes and lower costs will result from long- term, stable, and trusting relationships between patients and their healthcare team (Reid et al., 2010). These teams can guide patients through the compl