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Confronting Physician-Assisted Suicide and Euthanasia: My Father's Death Author(syf Susan M. Wolf Source: The Hastings Center Report, Vol. 38, No. 5 (Sep. - Oct., 2008yf S S 6 Published by: The Hastings Center Stable URL: http://www.jstor.org/stable/25165364 .

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. The Hastings Center is collaborating with JSTOR to digitize, preserve and extend access to The HastingsCenter Report. http://www.jstor.org This content downloaded from 146.201.208.22 on Sun, 15 Dec 2013 01:34:08 AM All use subject to JSTOR Terms and Conditions Confronting Physician Assisted Suicide and Euthanasia: My Father's Death BY SUSAN M. WOLF Duty: An act. . . required of one by position, social custom, law, or religion. . . . Moral obligation. ?American Heritage Dictionary of the English Language, 4th ed. My father's death forced me to rethink all I had writ ten over two decades opposing legalization of physician-assisted suicide and euthanasia.1 That should not have surprised me. Years ago, when I started work ing on end-of-life care, he challenged my views on advance directives by insisting that he would want "everything," even in a persistent vegetative state. "I made the money, so I can spend it." More deeply, he argued that the Holocaust was in compatible with the existence of God. There is no afterlife, he claimed. This is it, and he wanted every last bit of "it" on any terms.

My father was a smart, savvy lawyer, the family patriarch. He was forceful, even intimidating at times. We had fought over the years, especially as I neared college. That was proba bly necessary?my separating and our disengaging. When I was a child, it was a family joke how often he and I said the same thing at the same time. We were alike in many ways. My father was diagnosed with a metastatic head and neck cancer in 2002. His predictable view was "spare no effort." A top head and neck surgeon worked through conflicting pathology reports to locate the primary tumor in the thyroid Susan M. Wolf, "Confronting Physician-Assisted Suicide and Euthanasia: My Fathers Death," Hasting Center Report 38, no. 5 (2008yf 23-26. and excise the gland. Metastases would crop up from time to time, but radiation and then CyberKnife radiosurgery kept them in check. For five years he did well. Things changed in June of 2007. The last CyberKnife treatment was billed as the worst, with significant pain likely to follow. Sure enough, ten days later, my father's pain on swallowing became severe. He began losing weight?a lot of it. He weakened. He fell twice in his apartment. His regular internist was out of town, so he went to the emergency room of a local hospital. Doctors did little for this seventy-nine year-old man with a five-year history of metastatic thyroid cancer plus emphysema and chronic obstructive pulmonary disease. He was briefly discharged to home but finally made it to the head and neck surgeon who had found the primary tumor in 2002. One look at my father and the surgeon ad mitted him, ordering a gastrostomy tube to deliver nutrition. Now my father was in an excellent hospital, with the head and neck, pulmonology, and gastroenterology services work ing him up. The mood brightened and the family gathered around him. I spent days in his sunny hospital room remi niscing, plowing through the New York Times with him, singing the college fight songs he offered as lullabies when I was little. With multiple services focusing on my father's condition, I hoped the picture would soon come clear. I waited for a sin gle physician to put the pieces together. And the medical pic ture was becoming worse. A surgical procedure revealed can cer in the liver. Pulmonology added pneumonia to the roster of lung ailments. Meanwhile, dipping oxygen saturation numbers drove a trip to the intensive care unit. Attempted endoscopy revealed a tumor between the esophagus and tra chea, narrowing the esophagus. But no physician was putting the whole picture together. What treatment and palliative op tions remained, if any? What pathways should he?and we? be considering at this point? He Said He Wanted to Stop My father was becoming increasingly weak. He was find ing it difficult to "focus," as he put it. He could not read, do the New York Times crossword puzzles he used to knock off in an hour, or even watch TV. Fortunately, he could talk, and we spent hours on trips he had taken around the world, family history, his adventures as a litigator. But he was confined to bed and did little when he was alone. Then one morning he said he wanted to stop. No more tube feeding. No one was prepared for this switch from a life time of "spare no effort." He told me he feared he was now a terrible burden. I protested, knowing that I would willingly bear the "burden" of his illness. I suspect that what others said was more powerful, though. I was later told that the doctor urged him not to stop, warning that he would suffer a painful death, that morphine would be required to control the dis comfort, and that my father would lose consciousness before the day was out. Instead of assuring my father that health September-October 2008 HASTINGS CENTER REPORT 23 This content downloaded from 146.201.208.22 on Sun, 15 Dec 2013 01:34:08 AM All use subject to JSTOR Terms and Conditions professionals know how to maintain comfort after termina tion of artificial nutrition and hydration, my father was scared away from this option. Weeks later, my father would wish aloud that he had carried through with this decision. Convinced now that he had no choice, my father soldiered on. But hospital personnel announced that it was time for him to leave the hospital. We were incredulous. He could not stand, walk, or eat. He had bedsores. Even transferring him from bed to a chair was difficult. And the rigors of transport ing him in the early August heat were worrisome. But they urged transfer to a rehabilitation facility. My father was as sured that with continued tube feeding and rehab, he could be walking into the surgeon's office in October. It seemed to me my father was being abandoned. His prog nosis was clearly bad and he himself had now raised the prospect of stopping tube feeding and dying, but it shocked me to see the hospital try to get rid of him. Yes, the hospital said he could return (somehowyf in late September to see the ENT oncologist. But as far as I knew, that physician had never even met my father. And I doubted my father would make it to September. Still, no one was integrating the big picture. There seemed to be little choice. My father was successfully transported by ambulance to another hospital with a well-re garded rehabilitation unit. The transfer provided brief respite. My father was delight ed that he was now only blocks from his apartment, and the enticing possibility of actually going home beckoned. But the rehab unit demanded hours per day of rigorous work from each patient. My father was too weak. And his pneumonia was an issue. He was moved off rehab to the medical floor. A com passionate and attentive hospitalist appeared, trying to put to gether the big picture. She set about collecting the reports from the prior two hospitals and integrating them. Again, many teams were on board, including rheumatology now for flaring gout. I requested the palliative care team. Even though my father could be lucid and "himself," I listened painfully as he faltered through the questions on their minimental exam. It was hard to accept that this paragon of analytic and verbal precision was failing. I alerted a member of the palliative care team that my father had evidently been misinformed at the prior hospital about the consequences of stopping artificial nutrition and hy dration. I urged her to find a time to reassure him that he in deed had choices, could refuse treatments if he wanted to, and could be confident that his comfort would be maintained. I made clear to her that I hoped he would choose to stay the course for now and remain with us, but that he deserved to know that he had the choice. My father had designated his two proxy decision-makers (one of them meyf but could still participate in the medical decision-making. His values and his subjective experience?whether he wanted more interventions or had reached his limit?were key. Still unresolved, though, was the question of where we were headed. Could tube feeding and rehab bring him home and even walking into the surgeon's office in October? Was there treatment that could slow the growth of the newly discovered cancer in his lung? Should we instead pursue hospice care? At times, my father's illness seemed like Rashomon, a story with conflicting versions and possible trajectories. But soon my fa ther was back in the ICU, with oxygen saturation percentages dipping into the seventies. Tube feeding was so uncomfortable that it was administered slowly through the night. Pain med ication was a constant. Despite this, he held court in his room, enjoying the banter, and offering his own with that wry smile and cocked eyebrow. He was briefly transferred to the pulmonary care unit, as the most pressing issues at this point were actually not cancer but lung mucus and secretions, as well as pneumonia. I arrived one morning to find him upset. His nurse was not answering his calls, and his immobility left him at her mercy. I sum moned the highly experienced and empathetic supervisor, but even behind closed doors with her he was afraid to speak plainly. I saw this tough-as-nails litigator reduced to fearful de pendence.

"Can We Accelerate?" By morning there was a new problem. My father had de veloped a massive bleed. Nursing had found him in a pool of his own blood, lying among the clots. The gastroenterolo gists took him in for a procedure, spending hours trying to find the source of the bleed. They never found it. My father required transfusion of most of his blood volume. The bleed ing abated, but we knew it could resume any time. That was it?the final blow. My father was back in the ICU now, but the bleed and the hours spent searching for its source were too much. He waited until we gathered at his bed side. His speech was halting now, but his determination obvi ous. "Tell me my choices." We went through each option? you can keep going like this, or you can go back to the floor if the ICU is bothering you, or you can halt the tube feeding and IV hydration. You also can wait, rather than deciding right now.

For close to an hour we stayed in a tight circle around his bed, straining to hear his every word, crying, responding to each question. At one point, I thought he wanted to wait, but he called us back. "It could happen again. At 2 a.m.," he said. He wanted a decision now. "That's what I want. To termi nate." He made it clear he wanted to stop tube feeding and IV hydration. But that wasn't enough. He wanted consensus. With the decision made, we set about communicating it to the caregivers and getting new orders written. It was then that he uttered three words that shook me. "Can we accelerate?" It seemed he was asking for more?a fast death, by assisted sui cide or euthanasia. Reflexively, I said no, but with a promise? we can make absolutely certain they keep you comfortable. Even if you can't talk, even if you appear comatose, if you merely furrow your brow, we'll know you need more pain medication. I knew right away that I needed to think through my "no." In reality, we were in the ICU of a major hospital in a juris diction that allowed neither assisted suicide nor euthanasia. 24 HASTINGS CENTER REPORT September-October 2008 This content downloaded from 146.201.208.22 on Sun, 15 Dec 2013 01:34:08 AM All use subject to JSTOR Terms and Conditions Indeed, no jurisdiction in the United States allows euthanasia, and my father was beyond assisted suicide by swallowing pre scribed lethal medication, as he couldn't swallow anything. But I still needed to think this through. I knew that in some ways, my father presented what pro ponents of assisted suicide and euthanasia would regard as a strong case. He was clearly dying of physical causes, unlike the controversial 1991 Chabotcasz in the Netherlands involving a patient who was merely depressed. He certainly had less than six months to live. He was probably depressed by his illness, but in a way that was appropriate to his situation. His deci sional capacity had surely declined, but he was able to express definite treatment preferences. Moreover, he wasn't asking for a change in policy or law. Statewide or national changes in policy require considering a huge range of patients, antici pating the predictable errors and abuses. The Dutch have bravely documented all of this through empirical study of their practice of legalized euthanasia?viola tions of the requirement for a contemporaneous request by a competent patient, doctors fail ing to report the practice as re quired, and practice falling down the slippery slope to eu thanasia of newborns.2 Oregon has documented its experience with legalized assisted suicide, too, but only the cases reported as required, leaving great uncer tainty about cases not reported.3 My father wasn't asking for societal change, though, only whether he himself could "accelerate." I faced the highly indi vidual question of how to do right by my own father. We Kept Vigil, Around the Clock In truth, it was life that answered the question, not logic. In some ways, it would have been psychologically easier, or at least faster, to bring the ordeal we all were experiencing to a quick end. I was in a city far from my husband and children, doing shifts at my father's bedside at all hours, fearful of more looming medical disasters increasing his discomfort. But in stead of ending all of this and fleeing, we stayed, redoubling our attention to him. I stroked his thick white hair. He and I reminisced. He was always a great raconteur. We talked and talked over the next days. The decision to stop tube feeding actually seemed to lighten his load. A decision. In a way, it was a relief. And executing the decision took work, itself a devotion. It was around 6 p.m. when the decision was made. The ICU doctor came to the bedside to confirm the new plan and as sure my father that he would be kept comfortable. But the palliative care professional, about to go off-duty, insisted that my father would need to leave the hospital. I was astonished. Was she saying he could not terminate treatment here? That the hospital had no in-patient hospice care? That you could accept invasive treatment at this hospital, but not refuse it? After years of working on end-of-life issues, I knew better. I confronted her: "You know that my father has a constitution al and common law right to refuse invasive treatment, includ ing in this hospital." She acceded, but insisted that he would no longer meet the criteria for hospitalization; he would need to leave, to a hospice facility or home. The hospital evidently had no hospice to offer. Fine, we would set about arranging ad mission to hospice. There was more?concerns over whether the fluid flowing through a remaining line would wrongly prolong his life and whether giving morphine by pump rather than through his line would do the same. I reached out by cell phone and e mail to colleagues who were ex pert in maintaining comfort when artificial nutrition and hy dration are stopped. We signed the papers requesting transfer to hospice. At one point, my father asked, "Will I see the end com ing or fade away?" No one in the hospital was counseling my father. I worked my cell phone for answers and carried them to my father's bedside. To a man who could hold no faith after the Holocaust, I even brought the words and experience of my rabbi. We kept vigil, around the clock. He was out of the ICU now, in a hospital room awaiting transfer to hospice. As he began to doze more and talk less, we watched carefully for the slightest sign of discomfort. We had promised we would as sure his comfort. That meant constant vigilance. The last time I saw my father, he was motionless. His eyes were closed. He had stopped speaking. He appeared unre sponsive. His breathing was quieter, rasps gone with dehydra tion. I took his hand. I told him I loved him. I stroked his hair, still full and silvered. I spoke to him from the heart, words that remain between him and me. Then I heard myself say, "If I am a good mother, it's because you were a great fa ther." And to my surprise, he moved his jaw. Not his lips or his mouth. But he opened his jaw three times. It was our sig nal, the one we'd worked out in the ICU. Three means "I love-you." Tears streamed down my face. I struggled, remem bering the rabbi's caution that the ones we love most may need permission to leave us, to die. "I know you may have to It seemed he was asking for more?a fast death\ by assisted suicide or euthanasia. Reflexively, I said no, but I knew right away I needed to think through my "no." September-October 2008 HASTINGS CENTER REPORT 25 This content downloaded from 146.201.208.22 on Sun, 15 Dec 2013 01:34:08 AM All use subject to JSTOR Terms and Conditions leave before I get back. That's okay." It felt nearly impossible to let him go. My chest was bursting. The pain was crushing. When I finally left, I was working to breathe. Taking one step then another. Breaking down, collecting myself, breaking down again. He died not long after. In the End I will not pretend?there was a price to be paid for going the longer way, not the shorter. My father died slowly. He had to trust that we would keep a ferocious vigil, demanding whatever palliative care he needed. It was he who traveled that road, not me. I paid my own price, though. I felt the heavy weight of his trust and the obligation to fight for him. I was scared I might fail. I felt very close to the jaws of death. But with every memory we shared while he could speak, every lilt of his eyebrow and wry smile, we basked together in life, reveled in a bit more of fifty-four years together and his nearly eighty on this earth. Family and caregivers did manage to keep him comfortable. He died loved and loving. I grieve still. I reread the letters he wrote home from Ox ford in his twenties, I pore over the genealogy charts he painstakingly constructed over decades, I finger the abacus he kept in his law office. I go to e-mail him, then remember. I would not want to bear the burden of having "accelerated," of causing his death by euthanasia or assisted suicide; this is hard enough. My father's death made me rethink my objections to legalizing assisted suicide and euthanasia, but in the end it left me at ease with what I've written. Staying, keeping vigil, fight ing to secure a comfortable death, stroking his hair, standing guard as death approached was my duty. It was the final ripening of my love. We both changed, even closer at the end. Acknowledgments Thanks to Gene Borgida, Kathleen Foley, Bruce Jennings, and Joanne Lynn for helpful comments. Any errors are my own. 1. In the mid-1980s, I had led the Hastings Center project that de veloped Guidelines on the Termination of Life-Sustaining Treatment and the Care ofthe Dying (Indianapolis: Indiana University Press, 1987yf For a sample of my subsequent work on physician-assisted suicide, see "Gender, Feminism, and Death: Physician-Assisted Suicide and Eu thanasia," in Feminism and Bioethics: Beyond Reproduction, ed. S.M. Wolf (New York: Oxford University Press, 1996yf 282-317; "Physician Assisted Suicide in the Context of Managed Care," Duquesne Law Re view 35 (1996yf 455-79; "Physician-Assisted Suicide, Abortion, and Treatment Refusal: Using Gender to Analyze the Difference," in Physi cian-Assisted Suicide, ed. R. Weir (Indianapolis: Indiana University Press, 1997yf 167-201; "Facing Assisted Suicide and Euthanasia in Children and Adolescents," in Regulating How We Die: The Ethical, Medical, and Legal Issues Surrounding Physician-Assisted Suicide, ed. L.L. Emanuel (Cambridge, Mass.: Harvard University Press, 1998yf 92-119, 274-94; "Pragmatism in the Face of Death: The Role of Facts in the Assisted Sui cide Debate," Minnesota Law Review 82 (1998yf 1063-1101; and "As sessing Physician Compliance with the Rules for Euthanasia and Assist ed Suicide," Archives of Internal Medicine 165 (2005yf 1677-79. 2. I discuss all of this in my work cited above. See also P.J. van der Maas et al., "Euthanasia and Other Medical Decisions Concerning the End of Life," Lancet 338 (1991yf 669-74; L. Pijnenborg et al., "Life-Ter minating Acts without Explicit Request of Patient," Lancet 341 (1993yf 1196-99; P.J. van der Maas et al., "Euthanasia, Physician-Assisted Sui cide, and Other Medical Practices Involving the End of Life in the Netherlands, 1990-1995," New England Journal of Medicine 335 (1996yf 1699-1705; G. van der Wal et al., "Evaluation ofthe Notifica tion Procedure for Physician-Assisted Death in the Netherlands," New England Journal of Medicine 335 (1996yf 1706-11; A. van der Heide and P.J. van der Maas, "Medical End-of-life Decisions Made for Neonates and Infants in the Netherlands," Lancet 350 (1997yf 251-55; B.D. On wuteaka-Philipsen et al., "Euthanasia and Other End-of-life Decisions in the Netherlands in 1990, 1995, and 2001," Lancet 362 (2003yf 395 99; T. Sheldon, "Only Half of Dutch Doctors Report Euthanasia, Re port Says," British Medical Journal 326 (2003yf 1164; T. Sheldon, "Dutch Reporting of Euthanasia Cases Falls?Despite Legal Reporting Requirements," 328 (2004yf 1336; B.D. Onwuteaka-Philipsen et al., "Dutch Experience of Monitoring Euthanasia," British Medical Journal 331 (2005yf 691-93; E. Verhagen and P.J.J. Sauer, "The Groningen Pro tocol: Euthanasia in Severely 111 Newborns," New England Journal of Medicine 352 (2005yf 959-62; A. van der Heide et al., "End-of-Life Practices in the Netherlands Under the Euthanasia Act," New England Journal of Medicine 3yb (2007yf 1957-65. 3. See K. Foley and H. Hendin, "The Oregon Report: Don't Ask, Don't Tell," Hastings Center Report 29, no. 3 (1999yf 37-42; EJ. Emanuel, "Oregon's Physician-Assisted Suicide Law: Provisions and Problems," Archives of Internal Medicine 156 (1996yf 825-29. 26 HASTINGS CENTER REPORT September-October 2008 This content downloaded from 146.201.208.22 on Sun, 15 Dec 2013 01:34:08 AM All use subject to JSTOR Terms and Conditions