Nursing Ethics Paper on Terri Schiavo

n engl j med 352;16 www.nejm.org april 21, 2005 1630 PERSPECTIVE verse populations and less inclusive health care pro- grams, cautioned Joanne Lynn, a senior research- er with the RAND Corporation and director of the Washington Home Center for Palliative Care Stud- ies in Washington, D.C. “There isn’t a huge demand for assisted suicide in good care systems, but there could be a huge demand in much less adequate care systems,” Lynn said.

Psychiatrist Linda Ganzini of Oregon Health and Sciences University agrees that her state’s high- quality system of palliative care is the factor most responsible for keeping the number of assisted-sui-cide cases low. “Your safety net is your end-of-life care and your hospice care,” she said. “It’s not the safeguards that you build into the law.” 1. Colburn D. Why am I not dead? The Oregonian. March 4, 2005:A01. 2. Tolle SW, Tilden VR, Drach LL, Fromme EK, Perrin NA, Hedberg K. Characteristics and proportion of dying Oregonians who person- ally consider physician-assisted suicide. J Clin Ethics 2004;15:111-8. 3. Ganzini L, Nelson HD, Lee MA, Kraemer DF, Schmidt TA, Delorit MA. Oregon physicians’ attitudes about and experiences with end-of-life care since passage of the Oregon Death with Dig- nity Act. JAMA 2001;285:2363-9. 4. House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill. Volume I: Report. HL Paper 86-I. The story of Terri Schiavo should be disturbing to all of us. How can it be that medicine, ethics, law, and family could work so poorly together in meet- ing the needs of this woman who was left in a per- sistent vegetative state after having a cardiac ar- rest? Ms. Schiavo had been sustained by artificial hydration and nutrition through a feeding tube for 15 years, and her husband, Michael Schiavo, was locked in a very public legal struggle with her par- ents and siblings about whether such treatment should be continued or stopped. Distortion by inter- est groups, media hyperbole, and manipulative use of videotape characterized this case and demon- strate what can happen when a patient becomes more a precedent-setting symbol than a unique hu- man being.

Let us begin with some medical facts. On Feb- ruary 25, 1990, Terri Schiavo had a cardiac arrest, triggered by extreme hypokalemia brought on by an eating disorder. As a result, severe hypoxic–ische- mic encephalopathy developed, and during the sub- sequent months, she exhibited no evidence of high- er cortical function. Computed tomographic scans of her brain eventually showed severe atrophy ofher cerebral hemispheres, and her electroenceph- alograms were flat, indicating no functional activ- ity of the cerebral cortex. Her neurologic examina- tions were indicative of a persistent vegetative state, which includes periods of wakefulness alternating with sleep, some reflexive responses to light and noise, and some basic gag and swallowing respons- es, but no signs of emotion, willful activity, or cog- nition. 1 There is no evidence that Ms. Schiavo was suffering, since the usual definition of this term re- quires conscious awareness that is impossible in the absence of cortical activity. There have been only a few reported cases in which minimal cognitive and motor functions were restored three months or more after the diagnosis of a persistent vegetative state due to hypoxic–ischemic encephalopathy; in none of these cases was there the sort of objective evidence of severe cortical damage that was present in this case, nor was the period of disability so long. 2 Having viewed some of the highly edited video- taped material of Terri Schiavo and having seen other patients in a persistent vegetative state, I am not surprised that family members and others un- familiar with this condition would interpret some of her apparent alertness and movement as mean- ingful. In 2002, the Florida trial court judge con- ducted six days of evidentiary hearings on Ms.

Schiavo’s condition, including evaluations by four neurologists, one radiologist, and her attending Terri Schiavo — A Tragedy Compounded Timothy E. Quill, M.D. Related article, page 1710 Dr. Quill is a professor of medicine, psychiatry, and medi- cal humanities and the director of the Center for Palliative Care and Clinical Ethics at the University of Rochester Medical Center, Rochester, N.Y. Physician-Assisted Suicide — Oregon and Beyond An interview with Dr. Quill can be heard at www.

nejm.org.The New England Journal of Medicine Downloaded from nejm.org on April 5, 2017. For personal use only. No other uses without permission. Copyright © 2005 Massachusetts Medical Society. All rights reserved. n engl j med 352;16 www.nejm.org april 21, 2005 1631 PERSPECTIVE physician. The two neurologists selected by Michael Schiavo, a court-appointed “neutral” neurologist, and Ms. Schiavo’s attending physician all agreed that her condition met the criteria for a persistent vegetative state. The neurologist and the radiolo- gist chosen by the patient’s parents and siblings, the Schindler family, disagreed and suggested that Ms. Schiavo’s condition might improve with un- proven therapies such as hyperbaric oxygen or vaso- dilators — but had no objective data to support their assertions. The trial court judge ruled that the diagnosis of a persistent vegetative state met the le- gal standard of “clear and convincing” evidence, and this decision was reviewed and upheld by the Florida Second District Court of Appeal. Subsequent appeals to the Florida Supreme Court and the U.S.

Supreme Court were denied a hearing.

So what was known about Terri Schiavo’s wish- es and values? Since she unfortunately left no writ- ten advance directive, the next step would be to meet with her closest family members and try to un- derstand what she would have wanted under these medical circumstances if she could have spoken for herself, drawing on the principle of “substi- tuted judgment.” Some families unite around this question, especially when there is a shared vision of the patient’s views and values. Other families un- ravel, their crisis aggravated by genuine differences of opinion about the proper course of action or pre- existing fault lines arising from long-standing fam- ily dynamics.

Here Ms. Schiavo’s story gets more complex.

Michael Schiavo was made her legal guardian under Florida law, which designates the spouse as the de- cision maker above other family members if a pa- tient becomes irreversibly incapacitated and has not designated a health care proxy. After three years of trying traditional and experimental therapies, Mr.

Schiavo accepted the neurologists’ diagnosis of an irreversible persistent vegetative state. He believed that his wife would not want to be kept alive indefi- nitely in her condition, recalling prior statements that she had made, such as “I don’t want to be kept alive on a machine.” The Schindler family, however, did not accept the diagnosis of a persistent vegeta- tive state, believing instead that Ms. Schiavo’s con- dition could improve with additional rehabilitative treatment.

The relationship between Mr. Schiavo and the Schindler family began breaking down in 1993, around the time that a malpractice lawsuit revolv- ing around the events that led to Ms. Schiavo’s car-diac arrest was settled. In 1994, Mr. Schiavo attempt- ed to refuse treatment for an infection his wife had, and her parents took legal action to require treat- ment. Thus began wide-ranging, acrimonious legal and public-opinion battles that eventually involved multiple special-interest groups who saw this case as a cause célèbre for their particular issue. Michael Schiavo was criticized for being motivated by fi- nancial greed, and his loyalty to his wife was ques- tioned because he now lives with another woman, with whom he has two children. The Schindlers were criticized for not accepting the painful reali- ty of their daughter’s condition and for expressing their own wishes and values rather than hers.

The right of competent patients to refuse un- wanted medical treatment, including artificial hy- dration and nutrition, is a settled ethical and legal issue in this country — based on the right to bodily integrity. In the Nancy Cruzan case, the Supreme Court affirmed that surrogate decision makers have this right when a patient is incapacitated, but it said that states could set their own standards of evi- dence about patients’ own wishes. 3 Although both the Schiavo and Cruzan cases involved the potential withdrawal of a feeding tube from a patient in a per- sistent vegetative state, the family was united in be- lieving that Nancy Cruzan would not want to be kept alive in such a state indefinitely. Their challenge, un- der Missouri law, was to prove to the court in a clear and convincing manner that this would have been Nancy Cruzan’s own wish. The Schiavo case raises much more challenging questions about how to de- fine family and how to proceed if members of the immediate family are not in agreement.

The relevant Florida statute requires “clear and convincing evidence that the decision would have been the one the patient would have chosen had the patient been competent or, if there is no indication of what the patient would have chosen, that the de- cision is in the patient’s best interest.” Since there is no societal consensus about whether a feeding tube is in the “best interest” of a patient in a persis- tent vegetative state, the main legal question to be addressed was that of Terri Schiavo’s wishes. In 2001, the trial court judge ruled that clear and con- vincing evidence showed that Ms. Schiavo would have chosen not to receive life-prolonging treat- ment under the circumstances that then applied.

This ruling was also affirmed by the Florida ap- peals court and denied a hearing by the Florida Su- preme Court. When Terri Schiavo’s feeding tube was removed for the second time, in 2003, the Terri Schiavo — A Tragedy CompoundedThe New England Journal of Medicine Downloaded from nejm.org on April 5, 2017. For personal use only. No other uses without permission. Copyright © 2005 Massachusetts Medical Society. All rights reserved. n engl j med 352;16 www.nejm.org april 21, 2005 1633 PERSPECTIVE Florida legislature created “Terri’s Law” to override the court decision, and the tube was again reinsert- ed. This law was subsequently ruled an unconsti- tutional violation of the separation of powers.

On March 18, 2005, Ms. Schiavo’s feeding tube was removed for a third time. The U.S. Congress then passed an “emergency measure” that was signed by the President in an effort both to force federal courts to review Ms. Schiavo’s case and to create a legal mandate to have her feeding tube re- inserted yet again. The U.S. District Court in Flori- da denied the emergency request to reinsert the feeding tube, and this decision was upheld on ap- peal. Multiple subsequent legal appeals were de- nied, and Ms. Schiavo died on March 31, 2005, 13 days after the feeding tube was removed.

This sad saga reinforces my personal belief that the courts — though their involvement is some- times necessary — are the last place one wants to be when working through these complex dilemmas.

Although I did not examine her, from the data I reviewed, I have no doubt that Terri Schiavo was in a persistent vegetative state and that her cognitive and neurologic functions were unfortunately not going to improve. Her life could have been further prolonged with artificial hydration and nutrition, and there is some solace in knowing that she was not consciously suffering. I also believe that both her husband and her family, while seeing the situ- ation in radically different ways, were trying to do what was right for her. Her family and the public should be reassured and educated that dying in this way can be a natural, humane process (humans died in this way for thousands of years before the ad- vent of feeding tubes). 4 In considering such profound decisions, the cen-tral issue is not what family members would want for themselves or what they want for their incapac- itated loved one, but rather what the patient would want for himself or herself. The New Jersey Supreme Court that decided the case of Karen Ann Quinlan got the question of substituted judgment right: If the patient could wake up for 15 minutes and un- derstand his or her condition fully, and then had to return to it, what would he or she tell you to do? If the data about the patient’s wishes are not clear, then in the absence of public policy or family con- sensus, we should err on the side of continued treat- ment even in cases of a persistent vegetative state in which there is no hope of recovery. But if the evidence is clear, as the courts found in the case of Terri Schiavo, then enforcing life-prolonging treat- ment against what is agreed to be the patient’s will is both unethical and illegal.

Let us hope that future courts and legislative bodies put aside all the special interests and dis- tractions and listen carefully to the patient’s voice as expressed through family members and close friends. This voice is what counts the most, and in the Terri Schiavo case, it was largely drowned out by a very loud, self-interested public debate. This article has been modified from the version that was pub- lished at www.nejm.org on March 22, 2005. 1. Jennett B. The vegetative state: medical facts, ethical and legal dilemmas. New York: Cambridge University Press, 2002. 2. The Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state. N Engl J Med 1994;330:1499-508, 1572-9. [Erratum, N Engl J Med 1995;333:130.] 3. Gostin LO. Life and death choices after Cruzan. Law Med Health Care 1991;19:9-12. 4. Ganzini L, Goy ER, Miller LL, Harvath TA, Jackson A, Delorit MA.

Nurses’ experiences with hospice patients who refuse food and flu- ids to hasten death. N Engl J Med 2003;349:359-65. In January 2005, the government of India enacted a new rule that allows foreign pharmaceutical com- panies and other interested parties to conduct tri-als of new drugs in India at the same time that trials of the same phase are being conducted in other countries. This new rule supersedes a directive of India’s Drugs and Cosmetics Rules that required a “phase lag” between India and the rest of the world.

According to the old rule, if a phase 3 study had been completed elsewhere, only a phase 2 study was permitted in India. Even under the new rule, phase 1 Terri Schiavo — A Tragedy Compounded Dr. Nundy is a consultant in the Department of Surgical Gastroenterology, Sir Ganga Ram Hospital, and Dr. Gul- hati is the editor of the Monthly Index of Medical Special- ties — both in New Delhi, India. A New Colonialism? — Conducting Clinical Trials in India Samiran Nundy, M.Chir., and Chandra M. Gulhati, M.D., D.T.M.&H.The New England Journal of Medicine Downloaded from nejm.org on April 5, 2017. For personal use only. No other uses without permission. Copyright © 2005 Massachusetts Medical Society. All rights reserved.