Need a paper done

Confronting Physician-Assisted Suicide and Euthanasia: My Father's Death Author(s): Susan M. Wolf Source: The Hastings Center Report, Vol. 38, No. 5 (Sep. - Oct., 2008), pp. 23-26 Published by: The Hastings Center Stable URL: http://www.jstor.org/stable/25165364 . Accessed: 15/12/2013 01:34

Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at . http://www.jstor.org/page/info/about/policies/terms.jsp

. JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new forms of scholarship. For more information about JSTOR, please contact [email protected].

.

The Hastings Center is collaborating with JSTOR to digitize, preserve and extend access to The Hastings Center 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 (2008): 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 (somehow) 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 me), 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, 1987). 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, 1996), 282-317; "Physician Assisted Suicide in the Context of Managed Care," Duquesne Law Re

view 35 (1996): 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,

1997), 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, 1998), 92-119, 274-94;

"Pragmatism in the Face of Death: The Role of Facts in the Assisted Sui

cide Debate," Minnesota Law Review 82 (1998): 1063-1101; and "As

sessing Physician Compliance with the Rules for Euthanasia and Assist

ed Suicide," Archives of Internal Medicine 165 (2005): 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 (1991): 669-74; L. Pijnenborg et al., "Life-Ter

minating Acts without Explicit Request of Patient," Lancet 341 (1993): 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

(1996): 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 (1996): 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 (1997): 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 (2003): 395 99; T. Sheldon, "Only Half of Dutch Doctors Report Euthanasia, Re

port Says," British Medical Journal 326 (2003): 1164; T. Sheldon, "Dutch Reporting of Euthanasia Cases Falls?Despite Legal Reporting

Requirements," 328 (2004): 1336; B.D. Onwuteaka-Philipsen et al., "Dutch Experience of Monitoring Euthanasia," British Medical Journal 331 (2005): 691-93; E. Verhagen and P.J.J. Sauer, "The Groningen Pro

tocol: Euthanasia in Severely 111 Newborns," New England Journal of Medicine 352 (2005): 959-62; A. van der Heide et al., "End-of-Life

Practices in the Netherlands Under the Euthanasia Act," New England Journal of Medicine 3% (2007): 1957-65.

3. See K. Foley and H. Hendin, "The Oregon Report: Don't Ask, Don't Tell," Hastings Center Report 29,

no. 3 (1999): 37-42; EJ. Emanuel, "Oregon's Physician-Assisted Suicide Law: Provisions and

Problems," Archives of Internal Medicine 156 (1996): 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