Opinion: Medical aid in dying and the burden of choosing to live

Earlier this month, New York made medical aid in dying available for terminally ill New Yorkers with less than six months to live. Unlike most states, however, New York has added an unusual safeguard: In order to receive life-ending medication, patients must record their oral request on audio or video. The recording requirement makes vivid how much this law depends on patient choice. Proponents of medical aid in dying (MAiD) — the practice of allowing terminally ill patients to obtain medicine they can use to end their lives — argue that as long as there is no undue influence, giving people the choice to end their lives on their own terms empowers them. The recording simply helps to prove that the choice really was the patient’s. This thinking assumes that more choice means more autonomy, and more autonomy is better. But that assumption is too simple. A few decades ago, the philosopher David Velleman challenged that premise. He wasn’t worried that patients might be pressured into choosing death. Instead, he argued that sometimes, simply having an option can be harmful. More surprisingly, he argued that the harm can occur even if we never exercise the option — and even if we exercise it and benefit from doing so. Imagine a new teacher who is trying to attract students to the free tutoring she offers after school. One day, she approaches a quiet student after class and tells him about the opportunity. Unbeknownst to her, the student is doing perfectly well. Yet the offer leaves him wondering whether he’s not doing as well as he thought he was. If the student begins to doubt himself, his confidence may suffer. He may even end up needing the extra help. In that case, he will benefit from accepting the tutoring offer, even though, as Velleman observes, he would have been better off had the offer never been made. Once the offer has implied that something is wrong, the situation has already changed for the worse. Before the teacher approached him, the student thought he was doing well in school. Afterward, he had reason to wonder whether he was struggling. The option altered the situation, even if accepting it ultimately helped him. Medical aid in dying can create a similar dynamic. Just as the tutoring offer transformed a student’s understanding of himself, the availability of MAiD transforms the meaning of continued existence. When death becomes a medically sanctioned option, remaining alive can begin to look less like the status quo and more like a choice that requires justification. Without MAiD, we may enjoy, endure, or cope with life, but we don’t choose it. Once MAiD becomes available, however, the status quo changes. Choosing not to die becomes different from living without having to choose. The former takes away the possibility of simply staying alive by default. While suicide is always physically possible, there is a difference between recognizing that fact in the abstract and encountering death as an option presented by one’s physician. The latter transforms a possibility into a choice. And choices, unlike mere possibilities, can demand reasons. The student loses the ability to simply assume he is doing well. Likewise, the patient may lose the ability to simply continue living. In both cases, the option changes the situation and forces us to take responsibility for a decision that previously belonged to circumstance. This is the burden hidden inside the language of choice. Velleman asks us to imagine what it would be like to have to answer a question that most of us never confront: Why have you once again declined to kill yourself? For some people, that burden may be enough to change how they experience their remaining life. In such a case, they may ultimately benefit from choosing MAiD, even though they would have been better off not having had to confront the choice in the first place. Is this an argument against MAiD? Not exactly. The concern is not with helping people die, but with asking them to choose whether to die. While many patients may welcome the option of a swift and painless death, the challenge is how to make it available to those who would benefit from it without burdening those who would have been better off never confronting the choice. New York does not have a uniform rule for when doctors should raise MAiD. The formal process begins when a patient requests it. Some hospitals explicitly tell patients that they must initiate the conversation, which avoids imposing the choice on every terminally ill patient. But placing the burden on the patient creates another problem: Patients who do not know MAiD is available may never request it. Hence, while offering the choice risks burdening patients, waiting for them to ask risks denying meaningful access. There seems to be no obvious way around these problems. This is why the debate should not be framed only as a conflict between autonomy and prohibition. The student who is offered tutoring can still decline it, but he can no longer return to the situation that existed before the offer was made. End-of-life choices may work in a similar way. Monika Piotrowska is an associate professor of philosophy at the University at Albany, SUNY, where she works on bioethics and the philosophy of biology.