f r o m b i r t h t o d e a t h a n d b e n c h t o c l i n i c THE HASTINGS CENTER Bi o e t h i c s Br i e f i n g Bo o k for Journalists, Policymakers, and Campaigns

Chapter 30 Physician-Assisted Death

Timothy E. Quill and Jane Greenlaw, “Physician-Assisted Death,” in From Birth to Death and Bench to Clinic: The Hastings Center Briefing Book for Journalists, Policymakers, and Campaigns, ed. Mary Crowley (Garrison, NY: The Hastings Center, 2008), 137-142.

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Framing the Issue HIGHLIGHTS The question of whether severely ill patients are entitled to a physician’s help to end their suffering by ending their lives has n State-of-the-art palliative care should be the been debated since antiquity. The Hippocratic Oath suggested standard of care for treatment of suffering that this was outside of the physician’s professional responsibili - at the end of life. Physician-assisted death, if ever considered, should only be a last ties, but even in that time there was considerable disagreement. resort when such treatment has failed. In the modern era, there is consistent evidence of a secret prac - tice of physician-assisted death, and the profession and the law n The American public remains deeply divid - tend to look the other way as long as it does not become public ed on the question of whether to legalize physician-assisted death. (“Don’t ask, don’t tell.”). This secret practice was flaunted in the when Jack Kevorkian assisted in the deaths of approxi - n Most states prohibit physician-assisted mately 150 patients. Although he lost his professional license in death, and most state referenda challeng - ing this prohibition have failed. the process (he was a pathologist, not a clinician), he was not successfully prosecuted until he provided active at a n Two 1997 Supreme Court cases chal - patient’s request and was subsequently jailed for over eight years. lenged the constitutionality of the prohibi - tions against physician-assisted death: In the United States, most jurisdictions have prohibited physi - Washington v. Glucksberg and Quill v. cian assisted death either with specific statutory provisions or Vacco . judicial applications of more general statutes. There have been n Empirical studies in the United States show attempts to change the law using several methods: an underground practice of physician- n Legal challenges to the constitutionality of the prohibitions, assisted death that is not actively prosecut - ed as long as it is not openly discussed.

including two Supreme Court cases heard together h n Allowing patients to stop eating and drink - t

(Washington v. Glucksberg and Quill v. Vacco ). a

ing and sedating patients to the point of e

n State referenda; while several challenges to prohibitions on d unconsciousness are alternatives to ease

physician-assisted death failed, Oregon’s Death with Dignity otherwise intractable end-of-life suffering. d e

Act was passed in 1995 and has survived a variety of legal t s challenges. i s s

n Civil disobedience, in which physicians admitted to breaking a the law, thereby challenging the legal and professional sys - - n a

tems to come to grips with the inequities of the secret prac - i c

tice. i

Timothy E. Quill, MD, Director, Palliative s

Some controversy remains about what to call the practice. Care Program, Center for Ethics, y Humanities, and Palliative Care, University h

Common understanding of the word suicide equates it with men - p of Rochester • timothy_quill@ tal illness and irrational behavior, and the medical obligation is to urmc.rochester.edu, 585-273-1154 T prevent it if at all possible. Dying patients who see their lives C 30 A Jane Greenlaw, RN, JD, Director, Program being destroyed by illness sometimes come to view death as the T

N in Clinical Ethics, Center for Ethics, only way to escape their suffering and, therefore, as a means of O Humanities and Palliative Care, University self-preservation—the opposite of suicide. The Oregon Health C of Rochester • jane_greenlaw@ O urmc.rochester.edu, 585-275-0174 Department has stopped calling the practice physician-assisted T S Daniel Callahan, PhD, Co-founder and suicide and started calling it physician-assisted death. That is the T R President Emeritus, The Hastings Center • language we use here. E

P [email protected], 845-424- X 4040, x226 E Timothy E. Quill, MD, directs the Palliative Care Program at the University of Nancy Berlinger, PhD, Deputy Director Rochester’s Center for Ethics, Humanities, and Palliative Care, and Jane and Research Scholar, The Hastings Center • [email protected], Greenlaw, RN, JD, directs the Program in Clinical Ethics at the University’s 845-424-4040, x210 Center for Ethics, Humanities, and Palliative Care..

PHySICIAn-ASSISTEd dEATH 137 include psychological, social, existential, and spiri - P HYSICIAN -A SSISTED D EATH tual dimensions. The medical profession acknowl - G LOSSARY edges that such unacceptable suffering sometimes exists when a physician talks with a patient about Euthanasia – painlessly killing or permitting the death of indi - stopping life supports, but when there is no life viduals who are ill or injured beyond hope of recovery. support to stop, the medical profession tends to be Voluntary active euthanasia – hastening one’s own death judgmental of both the physician and the patient by use of drugs or other means, with a doctor’s direct assis - about not trying hard enough with standard pallia - tance. tive measures. In circumstances of intractable Passive euthanasia – hastening death by withdrawing life- patient suffering, there is evidence that physicians sustaining treatment and letting nature take its course in the United States sometimes assist in patients’ – causing or hastening the death of deaths. This is not an easy subject for empirical someone who has not asked for assistance with dying, such research because to admit participation, a physi - as a patient who has lost consciousness and is unlikely to cian must admit to a crime. Nonetheless, several regain it. very imperfect studies of the practice in the United Physician-assisted death – the practice of a physician pro - States suggest that in the majority of jurisdictions viding the means for a patient to end his own life, usually with where physician-assisted death is illegal, it a prescription for barbiturates that the patient takes himself; accounts for approximately 1–2% of deaths. sometimes also called physician-. In contrast, physician-assisted death is less com - mon in Oregon, where for 10 years it has been The public remains deeply divided on the ques - legal for terminally ill patients who experience tion of whether to permit physician-assisted death. unacceptable suffering. Data collected by the In most surveys, approximately two-thirds of the Oregon Health Department show that the practice population of the United States approve of it as an is stable and relatively rare, accounting for approxi - option for terminally ill patients with intractable mately one in 1,000 deaths. Although there were suffering. But when the question of legalization few physician-assisted deaths, there was much con - comes to a vote, it is usually closer to 50/50. This versation on the topic—one in 50 patients talked split probably reflects the inherent tensions in the with their doctors and one in six talked with their debate. On the one hand, most people know of families about the possibility. We also know that cases of severe suffering, even with excellent pal - pain management has improved in Oregon, hos - liative care, where the need for some predictable pice utilization is among the highest in the nation, escape is very compelling. On the other hand, and there is a statewide program to record patients’ there are real fears that physician-assisted death wishes about cardiopulmonary resuscitation could be used as a detour that avoids effective pal - (Physician Orders for Life-Sustaining Therapy, or liative care or as a way to eliminate the suffering of POLST). vulnerable patients by eliminating the sufferer. In the Netherlands, physician-assisted death and voluntary active euthanasia have been openly per - Physician-Assisted Death in Practice mitted for over 30 years (though they were formal - ly legalized only recently) and have been the sub - Palliative care—including excellent pain and ject of three major studies. These studies showed symptom management and psychosocial support very stable rates of physician-assisted death for patients and families—should be part of the (0.2–0.3%) and voluntary active euthanasia standard of care for all severely ill patients. Many (1.8–2.5%), and increasing public reporting over studies have demonstrated a significant gap time (now over 50%). The most controversial find - between the potential of palliative treatments to ing has been a small but persistent number of “life- relieve suffering and actual practice, so the first terminating acts without explicit requests” step if someone were considering physician-assist - (0.7–0.8%). There has been much discussion about ed death would be to ensure that the patient is these cases. Advocates maintain that the patients receiving the best possible palliative treatment. But were terminally ill, that they were experiencing there will always be a small percentage of cases intractable suffering, that they had lost capacity for where symptoms become intractable despite skill - decision-making, and that their physicians had ful efforts to help. Furthermore, patient suffering responded appropriately to end their suffering. cannot be restricted to the physical realm and must

138 THE HASTInGS CEnTEr bIoETHICS brIEfInG book Critics suggest that these cases are clear evidence of a practice out of control. In the Netherlands, L EGAL M ILESTONES : A T IMELINE there is a cultural bias that the responsibility to respond to an individual patient’s suffering out - 5 Oregon Death with Dignity Law (1995) 9 9

weighs the obligation to obey the law in these diffi - 1 • referendum passed in 1995 (52–49); challenged cult cases (“force majeure”). and repassed in 1997 (70–30) • Permits physician-assisted death subject to meeting several criteria: Legalizing Physician-Assisted Death • Terminally ill (prognosis of less than six months) Proponents and critics of physician-assisted • Mentally competent death each have different ethical reasons to support • Confirmed by a second opinion their positions. The principal arguments for legal - • Waiting period of two weeks ization are:

Patient autonomy. A patient should have the Washington v. Glucksberg and Quill v. Vacco right to control the circumstances of his or her own (1997) death and to determine how much suffering is too Main ethical arguments : much. • Liberty – patients have a right to request assistance Mercy. If a patient’s pain and suffering cannot in dying; physicians should have a right to respond be sufficiently relieved with state-of-the-art pallia - if within their value structures tive care, then the physician has an obligation to do • Equality – similarly situated patients (such as those on life supports) have the right to make life-ending everything within his or her power to relieve that decisions but not those without life supports to stop suffering, even to the point of hastening death if United States Supreme Court ruled: there are no realistic alternatives acceptable to the

0 • no constitutionally-protected right to physician- patient. 0

0 assisted death 2 Nonabandonment. The physician’s obligation • right to good pain management, even if it requires to his or her patient and family to see the dying doses that could hasten death process through and to be as responsive as possible • Potential right to palliative care h

outweigh other obligations and restrictions in these t troubling circumstances. a Netherlands Euthanasia Law (2004) e d

The principle arguments against allowing physi - cian-assisted death are: • 30 years of policy experience d e

• Initially illegal, but explicitly not prosecuted if t s

Wrongness of killing. Purposefully helping a clinician reported the act and met agreed upon i s

patient die is categorically wrong under any cir - criteria (very predictable legal system) s cumstances; excellent palliative care does not a • formally legalized in 2004 - include physician-assisted death. n

• Subject of three large national studies in the a i

Physician integrity. Physicians take a sacred context of all kinds of end-of-life practices c i oath never to knowingly harm a patient, and physi - • Permits either physician-assisted death or voluntary s active euthanasia provided these criteria are met: y

cian-assisted death would violate professional stan - h dards and undermine trust between physician and • p patient. • Voluntary consent Risk of abuse (slippery slope). Allowing • Second opinion recommended but not required 30 physician-assisted death poses too high a risk to • documentation and reporting 5 • Strong public and professional acceptance of vulnerable patients. Their lives could eventually be 0 0 the practices ended against their will, or when alternative 2 approaches to relieve suffering might be expensive or the suffering difficult to treat. ization. Would an open, legally regulated approach Whereas most experienced clinicians admit that make the practice of physician-assisted death safer, there are relatively rare, compelling cases that more predictable, and rare (as appears to be the could justify physician-assisted death, there are two case so far in Oregon)? Or would it erode the gains main empirical questions about the effect of legal - made in hospice and palliative care, making the

PHySICIAn-ASSISTEd dEATH 139 RESOURCES Web sites • nancy Vogel, “Assisted death bill fails Again in Capitol,” Los • www.urmc.rochester.edu/cehpc – the University of rochester Angeles Times , June 8, 2007. Medical Center’s Center for Ethics, Humanities and Palliative Further reading Care. Includes links, resources, and a newsletter. • Timothy E. Quill, “Physician-Assisted death in the United • www.aahpm.org – the American Academy of Hospice and States: Are the Existing `Last resorts’ Enough? Hastings Palliative Medicine. Position statement on physician-assisted Center Report, September-october 2008. death gives background and guidelines for evaluating a • daniel Callahan, “organized obfuscation: Advocacy for request. (http://www.aahpm.org/positions/suicide.html) Physician-Assisted Suicide,” Hastings Center Report, • www.oregon.gov - the oregon department of Human September-october 2008. Services’ Public Health division maintains a gateway page • Agnes van der Heide et al., “End-of-Life Practices in the on the death with dignity Act. Includes annual reports, netherlands under the Euthanasia Act,” New England reporting requirements, publications, and fAQs. Journal of Medicine , May 10, 2007. Recent news • Timothy E. Quill and Margaret P. battin, eds., Physician- • Jane E. brody, “A Heartfelt Appeal for a Graceful Exit,” New Assisted Dying: The Case for Palliative Care and Patient York Times , february 5, 2008. Choice , Johns Hopkins University Press, 2004. • daniel bergner, “death in the family,” New York Times , • Susan W. Tolle et al., “Characteristics and proportion of dying december 2, 2007. oregonians who Personally Consider Physician-Assisted • Charlotte f. Allen, “back off! I’m ,” Washington Suicide,” Journal of Clinical Ethics , Summer 2004. Post , october 14, 2007. • kathleen M. foley and Herbert Henden, The Case Against • darshak Sanghavi, “Helping My father die,” Boston Globe , Assisted Suicide: For the Right to End-of-Life Care , Johns July 3, 2007. Hopkins University Press, 2002.

environment riskier and more frightening for our resort options should only be considered when most vulnerable patients, (as the cases of involun - such treatments are ineffective. Good palliative tary euthanasia in the Netherlands appear to sug - care services are not available in all locations; gest)? Since the passage of Oregon’s Death with efforts to increase education and proliferation of Dignity Act, there have been a variety of attempts these services are being made by medical groups, to legalize physician-assisted death or other means state initiatives, and patient advocates. of easing patients’ suffering. Most have been When considering cases of intractable suffering unsuccessful. Referenda similar to Oregon’s were in the face of excellent palliative care, a more polit - defeated in Michigan and Maine. Efforts by Hawaii, ically and ethically acceptable alternative to legaliz - California, and New Hampshire to change the law ing physician-assisted death may be to expand through the legislative process have also failed. The other “last resort” options. Prescribing medication legislative approach proved especially difficult for aggressive management of pain and other because it led to polarized and unproductive politi - symptoms, even in doses that might unintentional - cal discussion. ly hasten death, has wide ethical, legal, and profes - An Oregon-style referendum will be on the bal - sional acceptance. This practice can be justified on lot in 2008 in the state of Washington. This state ethical grounds by the doctrine of double effect, had the original “death with dignity” referendum in which holds that even though it is wrong to take the United States in 1991. It included both physi - someone’s life intentionally, it can be permissible cian-assisted death and voluntary active euthanasia to risk foreseeably hastening someone’s death as and was narrowly defeated. The proximity to long as one’s intention is to relieve suffering. Oregon and similar demographics make prospects Another last resort option with wide acceptance for passage favorable, but by no means certain. is for patients to be able to stop (or not start) any potentially life-sustaining therapy if it does not meet their goals, even if their purpose in refusing Last Resort Options treatment is to escape suffering through an earlier State-of-the-art palliative care remains the stan - death. The possibility for patients to stop eating dard of care for any end-of-life suffering, and last and drinking voluntarily to escape intolerable suf -

140 THE HASTInGS CEnTEr bIoETHICS brIEfInG book fering is accepted by many hospices and has consid - other means of palliation.” erable ethical and legal support. The ethical justifi - Giving doctors and patients more open access cation for these options is that they preserve to—and awareness of—last resort options could have patients’ right to bodily integrity—to say what hap - several beneficial effects. One potential effect is pens to their own bodies. increased opportunity to get second opinions from A last resort response to some of the more com - skilled palliative care clinicians to be sure that other, plex and difficult cases is for physicians to sedate a less extreme avenues to address suffering have been patient to the point of unconsciousness to enable considered. Another benefit is reassurance to the person to escape otherwise intractable physical severely ill patients who fear end-of-life suffering suffering at the end of life. Support for this practice and want to know that there are some avenues of includes the 1997 Supreme Court decision in escape that can be pursued openly and predictably. Washington v. Glucksberg and Quill v. Vacco, which In addition, last resort options may lessen the desire recognized the right to good pain management, and need for physician-assisted death by providing even if it requires doses that could hasten death. alternatives. Some patients in Oregon are choosing This practice invokes the rule of double effect and these alternatives even though they have access to the right of bodily integrity. In July 2008 the physician-assisted death because, in some circum - American Medical Association stated that “it is the stances, these approaches are better able to address ethical obligation of a physician to offer palliative their particular needs. Finally, the added alterna - sedation to unconsciousness as an option for the tives increase both clinicians’ and society’s aware - relief of intractable symptoms” at the end of life ness of their obligation to address intolerable suffer - when “symptoms cannot be diminishesd through all ing when it is encountered. h t a e d

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PHySICIAn-ASSISTEd dEATH 141