Bioethics Forum Essay
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.