Imagine a world where patients with life-limiting illness think about requesting medical assistance to end their own lives before they hear about other options. In caring for patients at the end of life as a physician and a chaplain over the years, I discovered that the “aid in dying” option has crept into public consciousness without the necessary information and perspective to undergird it.
When people face incurable illness, fear of the unknown is a major force that can drive their thinking—as is anxiety about navigating complex care decisions. The task of physicians, then, is to help calm people and correct their misunderstandings. Yet in an era of instant gratification and limited face-to-face encounters, it can be easier to grasp ending one’s own life than to think about relying on others’ support to settle in for the long game. Many are susceptible to this frame of mind.
I read with great attentiveness Lydia Dugdale’s recent opinion piece in The New York Timestitled “There Are Ways to Die With Dignity, but Not Like This.” She and I share an interest in the ars moriendi—or art of dying—tradition, and we have had several conversations about its ongoing relevance and applicability. Although I tend to be more optimistic about the role of modern medicine and the promise of hospice and palliative care in supporting a culture of dying well, we agree that the Medical Aid in Dying Act currently under consideration in the New York State Senate (having recently passed in the State Assembly) is not about dying well but is instead about relinquishing our societal responsibility to care for those who are most vulnerable.
In her piece, Dr. Dugdale emphasizes the failure of the New York bill to protect depressed patients from ending their own lives. There is no requirement for a mental health professional to evaluate a patient unless one of the physicians involved deems it necessary. Another concern she raises is the bill’s inability to protect disabled persons. Although a life expectancy of six months or less is necessary to qualify, some patients with disabilities may be able to slide into a “terminal” condition by stopping treatment. These critiques are compelling. I am just as troubled, however, by the societal context out of which the New York bill arises. In 2024, New York ranked 50th among the states (just above Puerto Rico) for the percentage of its Medicare decedents who received hospice care prior to death. Most states have a hospice utilization rate of 45 percent or above, but New York sits uncomfortably at 26 percent.
One study published in 2022 sought to identify barriers to hospice utilization by comparing Medicare data between New York and the rest of the country. Although further work is needed to explore potential barriers, one key point from the study is that New York has markedly fewer hospice agencies per capita while at the same time having more skilled nursing facilities, nearly twice as many specialist physicians and more physicians visited in the last two years of life. The emerging picture is not a lack of resources but a distinct array of programs and services that—for whatever reason—are not conducive to hospice use.
It is a welcome step in the right direction that, last year, the New York State Department of Health launched a new Center for Hospice and Palliative Care to help reduce disparities in the use of high-quality end-of-life care. The center will research needs and opportunities across the state, develop model practices and engage stakeholders to promote advance care planning and expansion of end-of-life services. Planning is also currently underway to launch a public education campaign to enhance understanding of end-of-life care options. These developments are highly encouraging, but it is still too early to see a significant impact. And before we understand in full why hospice is so grossly underutilized in New York and develop a strategy to address this challenge, we need to ask: Is the proposed Medical Aid in Dying Act a threat to those New Yorkers who might choose hospice but are not finding their way to it?
I have never been so convinced of our societal inattention to hospice and palliative care as when I watched Pedro Almodóvar’s recent film “The Room Next Door”(2024). The director is well-known for his melodramatic, irreverent portrayals of popular culture, but this may be Almodóvar at his most serious. The film features a terminally ill New Yorker named Martha (Tilda Swinton), who reunites with her estranged friend Ingrid (Julianne Moore) and later asks her to be in “the room next door” while she takes a pill to end her own life. Martha has been receiving cancer treatments at the Manhattan Memorial Cancer Center—a thinly veiled reference to Memorial Sloan Kettering Cancer Center—but she feels trapped into continuing experimental treatments out of deference to her doctors’ wishes. Eventually, the two friends escape from the city on “vacation” so that Martha can take the lethal pill when the right moment arrives.
The most sobering thing about the film for me is not so much what it depicts but what it lacks: In nearly two hours of intimate dialogue about preparation for death and making the most of one’s final days, the word hospice never comes up. It may be true to the character of Martha that she would so wholly focus on self-determination. (“Cancer can’t get me if I get it first.”) Yet it is worth asking, at the level of storytelling, whether bringing up hospice and having Martha reject it would somehow diminish the audience’s sympathy for her. Martha represents a small but vocal number of highly educated, well-to-do members of society who eschew mainstream care options at the end of life. Is their stance somehow trickling down into the structures and legalities of health care across New York?
A few weeks ago, in my work as a hospital chaplain at Memorial Sloan Kettering, I was approached by a psychiatrist who asked me to offer support to a patient who was talking about suicide. I’ll refer to him as Daniel.
Daniel had just been diagnosed with cancer and was given a grim prognosis. Daniel told me that if it were not for his faith and his belief in an afterlife, he would probably seek assistance in taking his own life. With a great deal of time and attention from several staff members, including myself, Daniel was able to start processing his grief and to seek the right kind of support from the people around him. But I wonder whether we would have gone to the same lengths to help this man in his time of need if medically assisted dying had been legal.
What I experienced in Daniel’s care, rather, was inspiring and made me more optimistic about health care. Is it too much to hope for more of this in the United States?
