Bioethics Forum Essay
It’s Time to Change the Conversation About MAiD
In a recent commentary, physician Alan Astrow expressed skepticism about the legalization of medical aid in dying. He cited the subjectivity of determining whose suffering qualifies for medical assistance and concern that, given the painful American reality of unequal access to care, some vulnerable patients might be led, inappropriately or unwittingly, to MAiD. But these concerns neither stand up to evidence nor to my experience as a physician practicing in California before and after MAiD was legalized.
Ten states and the District of Columbia allow medical aid in dying and 18 more states have pending legislation to approve it. All the state laws are similar: they permit adults with terminal medical illnesses who are capable of making decisions to request legal prescriptions for aid-in-dying medication from a willing attending physician. Such patients must be able to ingest the drugs themselves. Twenty-two percent of Americans have legal access to MAiD today, largely because California is home to roughly one-eighth of the U.S. population.
For more than 20 years, Gallup polls have shown that the majority of the American public support MAiD. Surveys of American health professionals also show majority support. In a recent sample of nearly 600 Colorado physicians who routinely care for seriously ill adult patients, 88% indicated they would refer a qualifying patient who requested it for MAiD. Given what appear to be ineluctable U.S. trends toward state-by-state MAiD legalization, the time for professional debate about “whether to” is past, and that we should be focusing more on “who”—which patients should qualify?– and “how”—which practices should be permitted?
Support for legalized aid in dying is also growing in other countries. But the details of what, exactly, is legal varies from country to country. National attitudes and practices related to end of life are closely linked to the distinct histories, social environments, religions, cultures, and legal structures in those countries.
In Switzerland, for example, “assisted suicide” has been allowed since 1942, as long as the assistant is acting altruistically and not for “selfish” reasons. In 2006, the Swiss Federal Supreme Court recognized the right of an individual to decide how and when to end his or her life if the person faced “intolerable suffering” due to a chronic (though not necessarily imminently terminal) illness. The Swiss Academy of Medical Sciences has refined a set of guidelines for willing Swiss physicians, outlining how and when they can participate (by providing access to lethal prescriptions under specific circumstances).
Canada recently liberalized its approach to MAiD. In 2015, the landmark Supreme Court Decision Carter v Canadaconcluded that criminal code provisions prohibiting MAiD represented an unconstitutional infringement on the personal freedoms and basic rights of all Canadians. In 2021, the Canadian Parliament passed Bill C-7, which removed the “reasonably foreseeable natural death” requirement from Canadian federal law and replaced it with “intolerable suffering” from “non-terminal grievous and irremediable medical conditions.” That requirement was to have been extended to individuals with intolerable suffering due to some forms of grievous and irremediable mental illness in March. However, Canada decided to postpone this expansion, stating, “in its consultations with the provinces, territories, medical professionals, people with lived experience and other stakeholders, the Government of Canada has heard—and agrees—that the health system is not yet ready for this expansion.”
The “who” and “how” of aid in dying in Switzerland and Canada are very different from what they are in the U.S. The differences may come down to cultural beliefs and practices based on the histories of each country. It is hard to imagine, for example, the U.S. joining Canada in permitting aid in dying for grievous and irremediable mental illness. But some who disapprove of MAiD in the U.S. may point to Canada and Switzerland and see a “slippery slope” to a more expansive “who” and “how,” as well as to abuse.
Astrow expresses concern about MAiD legislation being considered in New York State. That bill is nearly identical to the laws in other states. A recent extensively sourced essay in Voices in Bioethics urges New York legislators to pass the law, pointing to 27 years of data from states that legalized MAiD, beginning with Oregon, that show no evidence of abuse. The essay also includes reference to testimony before the New York State legislature by the bioethicist and NYU Professor Arthur Caplan, a long-time critic of MAiD legislation. In his testimony he asserts that his “slippery slope” concerns had been allayed by nearly three decades of actual evidence.
I am a psychiatrist and a palliative care physician who has worked for more than 40 years primarily with patients who have cancer. During the years before California passed its 2015 End-of-Life Options Act, two of my palliative care patients committed suicide with guns. Both were older white men with advanced cancer and less than six months to live; neither had known psychiatric illness. Both received excellent palliative care and state-of-the art symptom management, but this was not enough to prevent them from feeling that their current and foreseeable existence was unacceptable. Nor did they think that legal measures such as palliative sedation or voluntarily stopping of eating and drinking would be acceptable. I see those suicides as the worst possible outcomes. The patients died alone, and in a violent manner. In retrospect, I view their clinical trajectories as a form of patient abandonment by well-intentioned but legally hamstrung clinicians.
The End-of-Life Options Act was signed into law by Governor Jerry Brown. Given his Jesuit religious training and background, his signing statement is notable:
“In the end, I was left to reflect on what I would want in the face of my own death.
I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.” (underline added)
Soon after the bill was signed, Janet Napolitano, then president of the University of California, directed each of the UC Health Hospital Systems to craft policies and procedures to enact the law. Her position was in contrast to those of the predominantly Catholic faith-based health systems in California, which indicated their intention not to participate and to enjoin their professional staffs from doing so. I was part of the working group at UCLA that wrote local policy and have been involved since then as a mental health practitioner who evaluates UCLA patients who requested MAiD and who are referred by attendings or consultant physicians, as the law stipulates.
The California Department of Public Health publishes annual reports on the use of the End-of-Life Options law. The most recent report, which contains 2022 data, shows that 803 of the 1,270 Californians who were prescribed drugs that year ingested them and died. (Another 50 people died after taking drugs in 2022 that had been prescribed the previous year.) The 853 MAiD deaths in 2022 represented just 0.28% of the total number of deaths in California that year (308,015). California’s “use rate” –that is, the percent of patients with prescriptions who use them—is around 60%, consistent with use rates from other states where MAiD is legal, evidence that a significant minority of patients never ingest the lethal prescription.
Since the California law’s inception, 91% of patients who obtained prescriptions for MAiD had been receiving hospice and/or palliative care services (rebutting one of the arguments that inadequate access to palliation is a driver for MAiD). In 2022, the majority (66%) had advanced cancers, with cardiac and neurological diseases tied for the next most prevalent. Seventy-five percent of the patients were 70 years of age or older; men slightly outnumbered women (52% to 48%). Ninety-nine percent had health insurance. Forty-two percent had a bachelor’s degree or higher. Ninety-five percent identified as white or Asian, with Hispanic (2.8%) and Black (0.5%) patients vastly under-represented in relation to their percentages among California citizens at large.
Californians who are approved for MAiD look socio-demographically very much like those who use it in other states—older, whiter, wealthier, and more educated than the general populations there. Typically, such groups have better than average access to care of all kinds and enjoy greater personal health literacy and agency, evidence against the argument that more protections are needed or that disadvantaged individuals are being coerced into unwanted or misunderstood decisions to receive MAiD. Credible arguments have been made asserting that MAiD laws discriminate against disabled persons who want to take advantage of them because the laws exclude people with limited capacity for ingesting medication on their own or who have progressive diseases that make them unable to articulate their wishes. An important question is whether underrepresented, disabled, and/or socioeconomically disadvantaged groups are suffering from reduced access to MAiD? Or if in some circumstances they are expressing (as some have argued) greater religious objection or hesitancy about engaging with health care systems near the end of life?
Towards the end of his essay, Astrow asserts that “nothing in their [physicians’] training prepares them to judge whether a person’s life is no longer worth living.” The implication is that a physician who participates in MAiD is making such a judgment. This is an oversimplification of what actually goes on between a patient requesting MAiD and the clinicians caring for her. The clinicians understand themselves to be supporting the patient’s thinking and choices about how much more of her imminently ending life is worth living. In addition, Astrow’s assertion demeans what MAiD represents to many individuals (and their families) who pursue it: an embrace, celebration, and honoring of a life unavoidably near its ending, the preservation of the self against an unwanted but inevitable end.
Far be it from any physician to presume to judge the value of another’s life. But far be it from those of us willing to engage in this way to be prevented from honoring the wishes of imminently dying individuals to be free to choose a peaceful, legal, painless, and swift end.
Thomas B. Strouse, MD, is the Maddie Katz Professor and Vice-Chair for Clinical Affairs in the UCLA department of psychiatry.
This was a great article! It concisely and accurately summarizes the data on medical aid in dying, which should assuage concerns about slippery slopes and abuses of lower income and marginalized groups. Anyone having such concerns should read the article
The author doesn’t discuss the opposition of some physicians regarding assisting in the death of patients, which they may feel is in opposition to the Hippocratic Oath requiring them to Do No Harm. In this case a view of the minority of physicians imposes their will on a majority of physicians who support MAiD, even if many in the majority would not be willing personally to supply MAiD
A thoughtful and contemporary essay, for sure. But – the question we should perhaps be asking is what to promise to the millions of mostly quite elderly Americans who soon will be unable to afford housing and food. Assets at retirement have been going down, while costs of living (especially living with disabilities and illnesses) keep going up. One estimate was that half of people who had lived in the middle class while working would be unable to afford housing, food, and medical care in old age. Some may seek MAID, but many may well just stop their “upkeep” when faced with living without a home. What is it that the larger community should ensure is always available before we accommodate to huge numbers of “deaths of despair” among older disabled people? At present, we don’t promise much – perhaps an understaffed Medicaid-paid nursing home, only if you qualify by income and disability. I think it will be quite “reasonable” for a person to seek to be dead by whatever means when faced with new-onset homelessness at 90 years old. MAID will help create the context, and will be the means in some cases. In any case, the “conversation about MAID” needs to be addressing this larger problem. There’s not a single state that promises decent housing, food, personal care, and medical care for its citizens. In a sense, it’s easy to argue rights and morals around MAID – and pretty hard to promise that we’ll ensure that fellow citizens are housed, fed, and cared for.
An excellent review of the current MAID debate by Dr Strouse. As for the Hippocratic Oath issue the harm done is the pointless and unnecessary suffering at the very end of the dying process. Like Dr Strouse I have also had patients commit suicide as their terminal illnesses reached endstage. The trauma inflicted on the families of these patients was enormous. As far as the affordable housing, food and dwindling retirement assets issue Dr Strouse clearly points out that data shows that MAID is used overwhelmingly by white, well educated, affluent (and I would add – secular) patients who are accustomed to a high sense of personal agency in making health care decisions for themselves. As far as needy or poorly resourced patients we should be asking how can we make MAID a more available, affordable and equitable option for those less advantaged groups for whom MAID is now likely unknown or unobtainable.
VERY much appreciate this essay, particularly with embedded data, personal experience, and compassion.
I thank Dr. Strouse for engaging with my essay. To help the reader, I will draw attention to our core differences. 1. Dr. Strouse believes that because 10 states have approved medically aided death, the trend is “ineluctable.” I believe that 40 states have not approved it and so it remains a live debate. He adds that because 1/8 of the U.S. population lives in California, it deservedly is leading the way on this issue. I note that many Americans are concerned about the direction in which California is heading. According to the LA Times, 39% in a recent poll indicated that California is a model we should avoid, with only 15% saying that California is a model we should copy: https://5233025.fs1.hubspotusercontent-na1.net/hubfs/5233025/Leger%20x%20LA%20Times%20-%20Perception%20of%20California.pdf
2. He is confident that the United States would never follow the path of Canada (or Switzerland), in say, allowing assisted death for mental illness. “The differences may come down to cultural beliefs and practices based on the histories of each country.” But these are the same cultural beliefs and practices, for one, the traditional common sense understanding that physicians and other health care professionals ought not use their skill to deliberately end a person’s life, that Dr. Strouse and other supporters seek to erode. What was “hard to imagine” yesterday is very real today, and as for the future, one can assume that assisted dying advocates, should they triumph here, will then move on to the next frontier. 3. He minimizes the role physicians play in enabling this practice. The physician, he writes, is merely “supporting the patient’s thinking.” This is an evasion. Even following the ideal model of shared decision-making, the doctor-patient relationship is not an equal relationship. The physician is validating the patient’s thinking from the position of the unique power and prestige of the medical profession. The physician is writing the prescription or in Canada directly administering the lethal cocktail. This is clearly a violation of the physician’s oath not to harm. 4. Strouse sees physician participation in the act of deliberately ending a person’s life as an “embrace, celebration, and honoring of a life.” Here’s another take, from a senior and widely beloved oncologist friend who has no particular position on this issue: he found it difficult to read about what Betty Rollin had done to herself in Switzerland. It gave him “the creeps,” that is, the practice of doctors participating in killing persons in this way he found creepy. We ought to take note of that feeling. 5. As Dr. Strouse notes, seekers of medically assisted death, in California and elsewhere are “older, whiter, wealthier, and more educated than the general populations there.” Exactly. This is a ‘concierge service’ for the well to do, who inhabit a universe with connections and resources unavailable to the average citizen. (I care for many patients of modest means; I find it unlikely that assisted death will have the same appeal, even if promoted and readily available, as in the well-off). In my view, it is time for the wealthy class in our country, who have accumulated such great riches and power over the past 50 years, to stop focusing on its own narrow wants and needs and start thinking about the broader public good.
Before my academic journey in Bioethics, the subject of Medical Aid in Dying barely crossed my mind. Recent events, however, have pushed me to confront and assess my standpoint on MAiD.
Dr. Strouse’s commentary expertly details the current and evolving state of MAiD both in the United States and internationally. His discussion underlined that some arguments opposing MAiD’s legalization might not hold water. I also found value in his insights from personal experiences with patients who, in the absence of MAiD, resorted to firearms to end their lives. These instances, likely widespread, are heart-wrenching. Such patients underscore the need for legalizing MAiD, to prevent such violent ends for those seeking closure.
I concur with Dr. Strouse that, when responsibly administered, MAiD provides individuals with a sense of control as they approach the end of their lives. In their final moments, empowering them with this last vestige of control can be profoundly meaningful.
Yet, I must highlight that adopting a policy akin to Canada’s near-decision, changing the prerequisites for MAiD to include ‘non-terminal grievous and irremediable medical conditions’, could raise several ethical concerns. If MAiD access becomes less restricted and includes patients with non-terminal, albeit severe conditions, I worry about potential misuse and abuse. I share Dr. Alan Astrow’s concern that vulnerable populations could be improperly steered towards MAiD.
While I believe MAiD legalization should be a goal for our healthcare systems, I maintain that it will complicate the realms of clinical and, more specifically, palliative care. I disagree, however, with Astrow’s assertion that complying with a patient’s MAiD request equates to deeming their life no longer worth living. I view MAiD as a last resort for patients who have exhausted all options and have accepted their fate. It’s a way for clinicians to respect their patients’ final wishes.
I acknowledge the instinctive resistance many clinicians have towards MAiD, but a shift in perception could help them accept it as a viable option for their patients. As Dr. Strouse pointed out, desperate patients often resort to drastic measures to end their lives. MAiD offers them a peaceful alternative, providing dignity for them and less trauma for their loved ones. As MAiD becomes more widely legalized, I hope that physicians with moral objections will come to see it as an act of compassion rather than harm.
I appreciate Dr. Astrow’s efforts to extend the dialogue generated by our recent essays. I am concerned that he may have misread the elements of mine, however. Below, I attempt to respond to his commentary. The numbers are intended to assist the reader in comparing my statements below to his numbered assertions.
1. My comment about the ineluctable nature of the trend towards legalization of MAiD in the US was in regard to public and physician survey data so strongly in its favor. Yes it is true that 1/8 of the US population lives in California, but I made no claim that California was exemplary, or “leading the way.” I do like living here though!
2. I am not confident that the US would never follow the path of Canada, Switzerland, or Benelux countries, nor did I say so. And I would be uneasy if the US did. But I do think it true that the differences to date reflect the variables I cited. I hope those differences keep the MAiD practices in the US more or less as they presently are—that is, limited to individuals with imminently terminal medical illnesses–but with likely necessary cautious modifications to meet the needs of terminally ill individuals with dementias (where a 6 month expected survival is often not consistent with the requirement to demonstrate decisional capacity) and certain neurologic conditions (ALS, for example) that may rob them of the motor ability to self-ingest.
3. I don’t dispute that the health professions are possessed with what Astrow calls “power and prestige”, though I am not sure it is unique. But I think the rest of his comments miss my point: our patients ultimately self-determine and declare their clinical trajectories both by acts of commission and acts of omission. These days, the omissions are less controversial (eg, choosing to stop dialysis, or voluntarily stopping eating and drinking). But some of those acts of commission (such as the violent suicides in terminally ill cancer patients I described in my initial essay) can be understood as desperate maneuvers to achieve death after a health professional declines to participate in a peaceful and legal process to achieve the same aim. Many MAiD- participating physicians would see that unwillingness as a form of harm to qualifying patients. The Hippocratic “Do No Harm” admonition is not be the monolith we sometimes allege it to be.
4. Wow. Where to start? First off, my own view is that the voluntary participation by a physician in writing a legal, lethal prescription in response to a request from a qualifying patient is often experienced by both the prescriber and the patient as exactly what I described: the embrace/celebration/honoring of a life. I didn’t make those descriptions up and no one of us gets to tell other people how it should feel or what it means. And—here I agree with Astrow’s anonymous colleague– it can also feel “creepy.” An internist friend of mine (not the prescriber) used similar words to describe his reaction to being present at the time of his imminently dying brother in law’s legal self-ingestion. Though the patient was within hours to days of exsanguinating at home from an exploding treatment-nonresponsive hematologic malignancy, and knew he did not want palliative sedation or to survive long enough to bleed out (in other words, though it all made sense and reflected this decisionally-capable patient’s long-held wishes and values) my friend still found it difficult to see his brother in law self-ingest and die peacefully within minutes. As perhaps it should. I would hope that none of us would become inured to or sanguine about MAiD even when it makes perfect sense and proceeds smoothly, as it did here. And of course nobody who objects to it should participate.
5. Astrow converts my factual description of the demographics of those Americans who have thus far utilized MAiD into an elitism vs social justice argument. To call MAiD a “concierge service for the well to do” is just inaccurate: it implies some kind of economic or social status barrier, which is not the case. For example, California Medicaid (MediCal) pays for the custom-compounded MAiD prescription; Medicaid and Medicare routinely cover generic palliative care and hospice services. It IS accurate to say is that there seems to be reduced demand for MAiD from historically under-represented/socioeconomically disadvantaged/minority patients, seen in every state where MAiD has been legalized. The available evidence suggests that those groups may regard MAiD with the same kind of caution that they often show towards palliative care and hospice more generally. While beyond the scope of this rebuttal, I simply refer to the literature demonstrating tendencies among seriously medically ill underrepresented groups towards distrust of the healthcare system and its prognostications, more religiosity in the face of end of life, and a greater likelihood of receiving more highly-aggressive, often non-beneficial hospital-based care in the last weeks of life.
Astrow’s final comment, that the wealthy class “needs to stop focusing on its narrow wants and needs and focus on the broader public good” is a righteous aim, though I don’t think it has much to do with the MAiD debate. As they say in differential diagnosis, “true, true, and unrelated.” Many of the individuals who pursue MAiD– including health care professionals–have led lives dedicated to advancing “the broader public good” and would be continuing to do so were it not for their terminal medical illness. From a distributive justice perspective, it is likely that individuals who pursue MAiD consume fewer precious healthcare resources and other societal goods than they otherwise might have. I can’t imagine that Astrow would seriously advocate for depriving them of that legal right even if he would personally decline to participate.