Responding to requests for physician-assisted death
- Timothy E Quill, MD
Timothy E Quill, MD
- Professor of Medicine, Psychiatry and Medical Humanities
- University of Rochester School of Medicine
- Margaret P Battin, MFA, PhD
Margaret P Battin, MFA, PhD
- Distinguished Professor, Department of Philosophy and Division of Medical Ethics and Humanities
- University of Utah
Euthanasia and physician-assisted death burst into the United States public arena in 1988 with the publication of "It's over, Debbie" . This article stirred an emotional debate, with many people criticizing what they saw as nonvoluntary euthanasia involving a lethal injection delivered by a physician who did not know the patient and who had only ambiguous evidence of her wishes ("Let's get this over with") [2,3]. The case later turned out to be a fabrication. A later (true) case report describing a patient with a terminal illness who made an intensely personal decision for aid in dying, involving a self-administered drug prescribed only after extensive discussion with her own physician, was received with less criticism and more balanced discussion; it was eventually considered by a grand jury, which recommended against indicting her physician . These two cases, in a sense, set the stage for the current disputes in the United States over physician-assisted dying. Less volatile discussion, as well as practice, had already begun elsewhere, especially in the Netherlands. In recent years, much of the developed world—those countries with long-life expectancies, highly developed healthcare systems, and mortality characterized primarily by diseases with long downhill courses (cancer, heart and other organ system failure, and dementia)—have seen the emergence of end-of-life debates and increasing pressures for legalization of assisted dying.
Many physicians, particularly those in the fields of oncology and palliative care, will be faced with a request for assistance in dying sometime in their professional lifetimes. No matter where clinicians stand ethically and morally on the permissibility of this practice and regardless of whether these practices are legally permitted or prohibited in a given jurisdiction, clinicians have to carefully consider and decide how they will respond to these requests. This topic focuses on the clinical aspects of evaluating and responding to such requests, emphasizing the importance of full evaluation, including the adequacy of palliative care and the availability of alternative treatments to alleviate suffering, and practical approaches that respect the values of the patient, the family, and the clinician as well as the particular legal constraints under which they reside. An extensive discussion of the ethical and legal issues surrounding euthanasia and assisted suicide is provided elsewhere. (See "Euthanasia and physician-assisted death".)
THE DEBATE OVER TERMINOLOGY
In this rapidly changing legal context, controversy abounds as to whether to label the practice addressed here with the negatively-valenced term "physician-assisted suicide" (typically used by opponents), the more neutral term "physician-assisted dying," or the more positively-valenced term "physician aid in dying" (typically favored by proponents) [5-8]. We prefer the relatively neutral term physician-assisted dying (PAD) as synonymous (in content, although not in emotional valence) with both physician-assisted suicide and aid in dying.
The term "euthanasia" also varies in its negative or positive connotations in different regions. In the Netherlands, "euthanasia" is understood in terms of its Greek roots: eu ("good") and thanatos ("death"), which means "good death," something that the patient chooses in preference to the "bad death" that might otherwise occur. In contrast, the term "euthanasia" is avoided in Germany, where the term is often associated with Nazi extermination policies, suggesting politically motivated death that is against the victim's wishes or interests (in this case, involuntary euthanasia). The Canadian Society of Palliative Care Physicians is endorsing the terms “patient administered physician hastened death” and “physician administered physician hastened death” respectively to ensure there is no misunderstanding, and clearly distinguish these practices from “palliative care”. In US jurisdictions where the practice is legally permitted, it is generally called "aid in dying" or referred to as "death with dignity", the title of the original Oregon statute. These and other terms relevant to this discussion are outlined in the table (table 1).
In the interest of neutrality and relative simplicity, the remainder of this topic will use the descriptive term "physician-assisted dying" (PAD) instead of "physician-assisted suicide," "aid in dying," or “patient administered physician hastened death”. It will use "voluntary-active euthanasia" (VAE) rather than “physician-administered physician hastened death” because of its common usage in the literature and because there is no internationally recognized neutral term available.
- A piece of my mind. It's over, Debbie. JAMA 1988; 259:272.
- Kass L. Neither for love nor money: why doctors must not kill. Public Interest 1989; No. 94:25.
- Singer PA, Siegler M. Euthanasia--a critique. N Engl J Med 1990; 322:1881.
- Quill TE. Death and dignity. A case of individualized decision making. N Engl J Med 1991; 324:691.
- Physician-assisted suicide: toward a comprehensive understanding. Report of the Task Force on Physician-assisted Suicide of the Society for Health and Human Values. Acad Med 1995; 70:583.
- Brody H. Causing, intending, and assisting death. J Clin Ethics 1993; 4:112.
- Cassel CK, Meier DE. Morals and moralism in the debate over euthanasia and assisted suicide. N Engl J Med 1990; 323:750.
- Fins JJ, Bacchetta MD. Framing the physician-assisted suicide and voluntary active euthanasia debate: the role of deontology, consequentialism, and clinical pragmatism. J Am Geriatr Soc 1995; 43:563.
- https://www.oregonlegislature.gov/bills_laws/lawsstatutes/2013ors127.html (Accessed on March 31, 2015).
- Quill TE, Lo B, Brock DW. Palliative options of last resort: a comparison of voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia. JAMA 1997; 278:2099.
- Annas GJ. Congress, controlled substances, and physician-assisted suicide--elephants in mouseholes. N Engl J Med 2006; 354:1079.
- Emanuel EJ, Daniels ER, Fairclough DL, Clarridge BR. The practice of euthanasia and physician-assisted suicide in the United States: adherence to proposed safeguards and effects on physicians. JAMA 1998; 280:507.
- Meier DE, Emmons CA, Wallenstein S, et al. A national survey of physician-assisted suicide and euthanasia in the United States. N Engl J Med 1998; 338:1193.
- Humphry D. Final Exit: The Preacticalities of Self-Deliverance and Assisted Suicide for the Dying, Dell, Eugene 1991.
- Jecker NS. Physician-assisted death in The Netherlands and the United States: ethical and cultural aspects of health policy development. J Am Geriatr Soc 1994; 42:672.
- Onwuteaka-Philipsen BD, van der Heide A, Koper D, et al. Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001. Lancet 2003; 362:395.
- van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, et al. End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med 2007; 356:1957.
- Quill TE, Dresser R, Brock DW. The rule of double effect--a critique of its role in end-of-life decision making. N Engl J Med 1997; 337:1768.
- The Case Against Assisted Suicide: For the Right to End of Life Care, Foley KM, Hendin H (Eds), Johns Hopkins University Press, Baltimore 2002.
- Prendergast TJ, Puntillo KA. Withdrawal of life support: intensive caring at the end of life. JAMA 2002; 288:2732.
- Norton SA, Tilden VP, Tolle SW, et al. Life support withdrawal: communication and conflict. Am J Crit Care 2003; 12:548.
- Prendergast TJ, Claessens MT, Luce JM. A national survey of end-of-life care for critically ill patients. Am J Respir Crit Care Med 1998; 158:1163.
- Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine. Crit Care Med 2008; 36:953.
- Quill TE, Byock IR. Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. Ann Intern Med 2000; 132:408.
- Ganzini L, Goy ER, Miller LL, et al. Nurses' experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med 2003; 349:359.
- Orentlicher D. The Supreme Court and physician-assisted suicide--rejecting assisted suicide but embracing euthanasia. N Engl J Med 1997; 337:1236.
- Tucker KL. Aid in Dying: An End of Life-Option Governed by Best Practices. J Health Biomed Law 2012; 324:691. Available at http://www.suffolk.edu/documents/Law%20Journal%20of%20H%20and%20B/Tucker-2-19.pdf (Accessed on July 13, 2015).
- http://www.patientsrightscouncil.org/site/new-mexico/ (Accessed on July 05, 2016).
- Battin MP, van der Heide A, Ganzini L, et al. Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in "vulnerable" groups. J Med Ethics 2007; 33:591.
- Meier DE, Emmons CA, Litke A, et al. Characteristics of patients requesting and receiving physician-assisted death. Arch Intern Med 2003; 163:1537.
- Pearlman RA, Hsu C, Starks H, et al. Motivations for physician-assisted suicide. J Gen Intern Med 2005; 20:234.
- Suarez-Almazor ME, Newman C, Hanson J, Bruera E. Attitudes of terminally ill cancer patients about euthanasia and assisted suicide: predominance of psychosocial determinants and beliefs over symptom distress and subsequent survival. J Clin Oncol 2002; 20:2134.
- Office of Disease Prevention and Epidemiology. Department of Human Services, State of Oregon. Twelfth Annual report on Oregon's Death with Dignity Act, March 10, 2005. http://oregon.gov/DHS/ph/pas/docs/year12.pdf (Accessed on February 27, 2012).
- Tolle SW, Tilden VR, Drach LL, et al. Characteristics and proportion of dying Oregonians who personally consider physician-assisted suicide. J Clin Ethics 2004; 15:111.
- Onwuteaka-Philipsen BD, Brinkman-Stoppelenburg A, Penning C, et al. Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey. Lancet 2012; 380:908.
- Quill T, Arnold RM. Evaluating requests for hastened death #156. J Palliat Med 2008; 11:1151.
- Quill T, Arnold RM. Responding to a request for hastening death #159. J Palliat Med 2008; 11:1152.
- Quill TE. Doctor, I want to die. Will you help me? JAMA 1993; 270:870.
- Starks H, Pearlman RA, Hsu C, et al. Why now? Timing and circumstances of hastened deaths. J Pain Symptom Manage 2005; 30:215.
- Ganzini L, Goy ER, Dobscha SK. Why Oregon patients request assisted death: family members' views. J Gen Intern Med 2008; 23:154.
- Quill TE, Brody RV. 'You promised me I wouldn't die like this!' A bad death as a medical emergency. Arch Intern Med 1995; 155:1250.
- Quill TE, Lee BC, Nunn S. Palliative treatments of last resort: choosing the least harmful alternative. University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel. Ann Intern Med 2000; 132:488.
- Oregon Death With Dignity Act: 2015 Data Summary http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year18.pdf (Accessed on March 29, 2016).
- Quill TE. Opening the black box: physicians' inner responses to patients' requests for physician-assisted death. J Palliat Med 2004; 7:469.
- Orentlicher D, Pope TM, Rich BA. Clinical Criteria for Physician Aid in Dying. J Palliat Med 2016; 19:259.
- Billings JA, Block SD. The end-of-life family meeting in intensive care part III: A guide for structured discussions. J Palliat Med 2011; 14:1058.
- Hudson P, Quinn K, O'Hanlon B, Aranda S. Family meetings in palliative care: Multidisciplinary clinical practice guidelines. BMC Palliat Care 2008; 7:12.
- Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the end of life: "they don't know what they don't know". JAMA 2004; 291:483.
- http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx (Accessed on March 31, 2015).
- Breitbart W, Rosenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 2000; 284:2907.
- Potash M, Breitbart W. Affective disorders in advanced cancer. Hematol Oncol Clin North Am 2002; 16:671.
- Wilson KG, Dalgleish TL, Chochinov HM, et al. Mental disorders and the desire for death in patients receiving palliative care for cancer. BMJ Support Palliat Care 2016; 6:170.
- Kissane DW, Clarke DM, Street AF. Demoralization syndrome--a relevant psychiatric diagnosis for palliative care. J Palliat Care 2001; 17:12.
- Robinson S, Kissane DW, Brooker J, Burney S. A systematic review of the demoralization syndrome in individuals with progressive disease and cancer: a decade of research. J Pain Symptom Manage 2015; 49:595.
- Position paper on the role of the physician in the voluntary termination of life. http://knmg.artsennet.nl/Publicaties/KNMGpublicatie-levenseinde/100696/Position-paper-The-role-of-the-physician-in-the-voluntary-termination-of-life-2011.htm (Accessed on July 10, 2015).
- Physician-Assisted Dying: The Case for Palliative Care and Patient Choice, Quill T, Battin M (Eds), Johns Hopkins University Press, Baltimore 2002.
- Eggertson L. Most palliative physicians want no role in assisted death. CMAJ 2015; 187:E177.
- Harlow T. No more physician in physician-assisted suicide. BMJ Support Palliat Care 2015; 5:122.
- Quill TE, Cassel CK. Nonabandonment: a central obligation for physicians. Ann Intern Med 1995; 122:368.
- Battin MP. The Least Worst Death: Essays in Bioethics on the End of Life, Oxford University Press, New York 1996.
- Quill TE, Byock IR. Responding to Intractable Terminal Suffering. Ann Intern Med 2000; 133:561.
- Quill TE. Legal regulation of physician-assisted death--the latest report cards. N Engl J Med 2007; 356:1911.
- Sullivan AD, Hedberg K, Hopkins D. Legalized physician-assisted suicide in Oregon, 1998-2000. N Engl J Med 2001; 344:605.
- Quill TE. The ambiguity of clinical intentions. N Engl J Med 1993; 329:1039.
- Van Der Maas PJ, Van Delden JJ, Pijnenborg L, Looman CW. Euthanasia and other medical decisions concerning the end of life. Lancet 1991; 338:669.
- Ganzini L, Nelson HD, Schmidt TA, et al. Physicians' experiences with the Oregon Death with Dignity Act. N Engl J Med 2000; 342:557.
- Dobscha SK, Heintz RT, Press N, Ganzini L. Oregon physicians' responses to requests for assisted suicide: a qualitative study. J Palliat Med 2004; 7:451.
- Meier DE, Back AL, Morrison RS. The inner life of physicians and care of the seriously ill. JAMA 2001; 286:3007.
- THE DEBATE OVER TERMINOLOGY
- Terms to use with patients
- DEFINING AND DESCRIBING PRACTICES
- Physician-assisted dying
- Voluntary active euthanasia
- Potential alternatives to PAD and VAE
- CURRENT LEGAL STATUS
- WHO ASKS ABOUT ASSISTANCE IN DYING?
- RESPONDING TO INQUIRIES ABOUT FUTURE PAD OR VAE
- Addressing the patient's concerns
- Defining physician limitations
- Responding to a request in advance of need
- HANDLING A CURRENT URGENT REQUEST
- Understanding the family's concerns
- Assessing the patient's capacity
- Ensuring the adequacy of current palliative care in addressing the patient's suffering
- Consultation services for physicians
- PERSONAL AND PROFESSIONAL CHALLENGES FOR THE CLINICIAN
- Defining limitations