- Please see the this page for a Letter to the Editor by Susan Stefan, Esq. with a response from the authors.
- Please see this page for a Letter to the Editor by Mark Komrad, MD.
- See this page for a Letter to the Editor by Johan Verhulst, MD, FACP.
“Assisted Dying,” “Medical Aid in Dying” (MAID), “Physician Assisted Suicide”(PAS)—by whatever label we attach to it controversy continues to swirl around the practice of prescribing a lethal drug for a patient with a putatively terminal illness.1,2 (For now, let’s leave aside the point that physicians are notoriously bad in predicting when a patient will die, getting it wrong about 80% of the time and underestimating life expectancy in about 17% of cases.3)
To be clear: people of conscience, including many physicians, are sharply divided regarding whether, and under what conditions, MAID/PAS may be ethically justified—even when it is legal.4 The challenges of providing end-of-life care that preserves the patient’s humanity and minimizes pain and suffering are complex and daunting. We do not believe there are simple, universally applicable clinical or ethical options for addressing these challenges. However, in this essay, we argue that support for “assisted dying” as the preferred option is founded on numerous misconceptions regarding existing MAID/PAS statutes, among both the general public and many physicians. Here, we discuss two fundamental misconceptions: the myth of the patient’s autonomy, and the myth of the incurability of the patient’s illness.
Authentic autonomy and pseudo-autonomy
The term “autonomy” literally means, “living by one’s own laws” (autos “self” + nomos “law:). In medical ethics, as Beauchamp and Childress explain,
Personal autonomy is, at minimum, self-rule that is free from both controlling interference by others and from limitations, such as inadequate understanding, that prevent meaningful choice. The autonomous individual acts freely in accordance with a self-chosen plan. . . . A person of diminished autonomy, by contrast, is in some respect controlled by others or incapable of deliberating or acting on the basis of his or her desires and plans.”5
In Greek philosophy, nomos pertains as much to norms of moral conduct derived from reason as it does to external political rules.6 The two myths we discuss—though enshrined in the laws of PAS-permissive states—lack any foundation in well-reasoned ethical principles. Thus, proponents of MAID/PAS statutes typically argue that these laws are grounded in the patient’s “autonomy,” and establish “the patient’s right to die” or “the right to death with dignity.” Yet the US Supreme Court has never recognized a constitutionally based “right to die;” a “right to commit suicide;” or a “right to assisted suicide,” although it has upheld a competent patient’s right to refuse life-saving treatment.7 The Supreme Court’s rulings (eg, Washington v Glucksberg and Vacco v Quill) stand in a long line of legal precedent and common law tradition, reflecting foundational Anglo-American philosophical and religious values. These include the state’s legitimate interest in safeguarding human life and preserving the integrity of the medical profession.
Even a casual perusal of most MAID/PAS legislation—modeled closely on the 1997 Oregon “Death with Dignity” statute—reveals that these statutes provide nothing remotely resembling “autonomy” for the patient, in either the procedural or personal sense.8 Patients who wish to avail themselves of prescribed, lethal medication must clear a number of procedural and administrative hurdles that depend entirely on the diagnostic, prognostic, and prescriptive authority of the patient’s physician. The controlling decisions regarding the patient’s diagnosis; the need for a consultant to confirm the diagnosis; the putative “terminal” nature of the illness; the completion of required certification forms; and, finally, the writing of the lethal prescription are all exercises of the physician’s autonomy.
In contrast, when competent patients refuse life-sustaining care or choose “voluntarily stopping eating and drinking” (VSED), they are making genuinely autonomous choices.9 These options may allow patients to regain a sense of control and self-direction. Palliative and hospice care, at their finest, are about empowering such patient-driven choices. Ironically, as Varelius observes, “. . . in voluntary euthanasia and physician-assisted suicide . . . one ceases to be an agent and loses control over one’s life.”10
The famous libertarian and critic of psychiatry, Thomas Szasz, was one of the first to “call foul” on the notion of patient autonomy in MAID/PAS. As Szasz succinctly puts it in his book, Fatal Freedom,
. . . the legal definition of PAS as a procedure that only a physician can perform expands the medicalization of everyday life; extends medical control over personal conduct, especially at the end of life; and diminishes patient autonomy.11p67
Indeed, Szasz’s analysis makes clear that the patient who elects PAS is not making a procedurally autonomous decision, but a heteronomous one (ie, subject to a law or standard external to oneself). Ironically, this heteronomy is a form of paternalism that actually undermines the patient’s autonomy by surrendering control to “the other,” be it physician or government. Not coincidentally, Szasz regarded physician-assisted suicide as little more than “bureaucratized medical killing.”11p94
Of course, there is much more at stake in this debate than mere procedural autonomy (ie, the ability to “command and control” a particular sequence of events or procedures). At issue is what we would call authentic autonomy, which reflects both the psychology and the core internal values of the person. How, then, is the patient’s authentic autonomy assessed under current PAS statutes? To what degree is the patient’s genuine informed consent ensured? And are there sufficient safeguards under current PAS statutes to ensure that the patient does not have a psychiatric disorder that would impair understanding and undermine informed consent? Can a person in such existential distress truly exercise the voluntarism that is integral to authentic autonomy? We believe that, under current MAID/PAS regulations, these critical issues have not been given serious moral consideration.
Indeed, as our colleague, Dr. James L. Knoll IV, has written,
. . . problems not likely to be resolved anytime soon include: the lack of a widely accepted capacity assessment for PAD [physician-assisted dying]; the absence of any legally defined test for capacity to consent to PAD; clearly distinguishing depressive symptoms from a “rational” wish to die; and the fallibility of evaluators…This would seem to lead into a morass of fundamentally subjective determinations.12
Furthermore, it is not true that under current PAD statutes “. . . mental illness that would affect the rationality of decision-making is screened out,” as erroneously claimed in a position paper from the American Association of Suicidology.13 One of the most profound and misunderstood limitations of statutes modeled after the Oregon Death with Dignity Act is that they do not require examination by a mental health professional, except when the participating physician is “concerned” and decides to do so. In fact, in Oregon, 204 patients were prescribed lethal drugs in 2016 under the “Death with Dignity” statute, yet only 5 patients were referred for psychiatric or psychological evaluation.14
But let’s assume that an ideal assessment process is available; that the physician utilizes it when the request for “aid in dying” is made; and that the physician finds the patient to have the requisite decision-making capacity under the law to receive the lethal prescription. This says little about the patient’s state of mind once he or she leaves the office with the prescription. There remains a huge informational gap, since the physician can in no way guarantee that, once in the home setting, the patient’s decision is free from familial pressure, economic coercion, or “conflicts of interest.”
Under current “Oregon type” statutes, there are no mandatory procedures in place that comprehensively evaluate the dynamics of the patient’s severely stressed family system. For example, does the patient have a family member who stands to gain from the patient’s suicide—by, say, inheriting a large sum of money, or being freed from the burden of caring for the patient? Oregon-type PAS statutes do not even require that a health care professional be present at the time of the lethal ingestion—and in most cases, no such professional is present. All these factors tend to undermine authentic autonomy, as Varelius notes: “If a person’s choices, decisions, beliefs, desires, etc are due to such external influences as . . . socialization, manipulation, coercion, etc, they are not autonomous.”10
Rather, current PAS statues create a superficial “pseudo-autonomy” that is, at best, cosmetic in nature. Procedural boxes may be checked, but the underlying conscious and unconscious motives of those involved are virtually ignored. In particular, the role of transference, countertransference, and coercion in PAS decisions has been sorely neglected, as have the unconscious fears and fantasies of the patient requesting PAS. Indeed, “. . . coercion and unconscious motivations on the part of patients and doctors in the form of transference and countertransference contribute to the misapplication of physician-assisted suicide.”15
1. Pies R. Brittany Maynard and the Loose Language of Suicide. Medscape. November 19, 2014 https://www.medscape.com/viewarticle/835014. Accessed July 2018.
2. Pies R, Geppert CM. Not just a matter of semantics. Psychiatric Times. Feb. 2, 2017 http://www.psychiatrictimes.com/couch-crisis/not-just-matter-semantics. Accessed July 12, 2018.
3. Christakis NA, Lamont EB. Extent and determinants of error in physicians' prognoses in terminally ill patients prospective cohort study. West J Med. 2000;172: 310-313.
4. Starks H, Dudzinski D, White N, et al. Physician Aid-in-Dying. Ethics in Medicine. https://depts.washington.edu/bioethx/topics/pad.html. Accessed July 12, 2018.
5. Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 5th ed. New York: Oxford University Press; 2001: 58.
6. Lane M. Ancient political philosophy. Zalta EM, Ed. Stanford Encyclopedia of Philosophy. Stanford University: Metaphysics Research Lab; 2017.
7. Waimberg J. Does the constitution protect a “right to die”? https://constitutioncenter.org/blog/does-the-constitution-protect-a-right-to-die. Accessed July 12, 2018.
8. Oregon Health Authority. Death With Dignity Act: Revised Statute. https://www.oregon.gov/oha/ph/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ors.aspx. July 12, 2018.
9. 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 Jul 24;349:359-365.
10. Varelius J. The value of autonomy in medical ethics. Med Health Care Philos. 2006;9:377-388.
11. Szasz TS. Fatal Freedom: The Ethics and Politics of Suicide. Syracuse University Press, 2002.
12. Knoll JL. Suicide prohibition: shame, blame, or social aim? Haldipur C, Knoll JL, Luft E, Eds. Thomas Szasz: An Appraisal of His Legacy. NY: Oxford University Press (In press).
13. Statement of the American Association of Suicidology: Suicide Is Not the Same as Physician Aid in Dying. http://www.suicidology.org/Portals/14/docs/Press%20Release/AAS%20PAD%20Statement%20Approved%2010.30.17%20ed%2010-30-17.pdf. Accessed July 12, 2018.
14. Oregon Death With Dignity Act: Data Summary 2016. https://www.oregon.gov/oha/ph/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year19.pdf. Accessed July 12, 2018.
15. Hicks M. Physician-assisted suicide: a review of the literature concerning practical and clinical implications for UK doctors. BMC Fam Pract. 2006;7:39.
16. Hallowell B. Why so many doctors oppose euthanasia and assisted suicide. Deseret News. August 2016. https://www.deseretnews.com/article/865659304/Why-so-many-doctors-oppose-euthanasia-and-assisted-suicide.html. Accessed July 12, 2018.
17. Pies R. Physician-Assisted Suicide and the Rise of the Consumer Movement. Psychiatric Times. August 2916. http://www.psychiatrictimes.com/couch-crisis/physician-assisted-suicide-and-rise-consumer-movement. Accessed July 12, 2016.
18. Tauber AI. Sick autonomy. Perspect Biol Med. 2003;46:484-495.
19. Wardrope A. Autonomy as ideology: towards an autonomy worthy of respect. New Bioeth. 2015;21:56-70.
20. Desai AK, Grossberg GT. Psychiatric Consultation in Long-Term Care. Baltimore, MD: Johns Hopkins University Press; 2010: 262.
21 Stahle F. Oregon Health Authority Reveals Hidden Problems with the Oregon Assisted Suicide Model. January 2018. https://www.masscitizensforlife.org/oregon-health-authority-reveals-hidden-problems-with-the-oregon-assisted-suicide-model. Accessed July 12, 2018.
22 Marine JE. Physician-Assisted Suicide: Why Physicians Should Oppose It. February 2018. https://www.acponline.org/system/files/documents/about_acp/chapters/md/marine.pdf. Accessed July 12, 2018.
23. Komrad MS. APA position on medical euthanasia. Psychiatric Times. February 2017. http://www.psychiatrictimes.com/suicide/apa-position-medical-euthanasia. Accessed July 12, 2018.
24. Pies RW, Hanson A. Twelve myths about physician assisted suicide and medical aid in dying. MD Magazine. July 7, 2018. https://www.mdmag.com/medical-news/twelve-myths-concerning-medical-aid-in-dying-or-physicianassisted-suicide. Accessed July 12, 2018.