Bioethics Forum Essay
Does Calling Severe Anorexia a Terminal Condition Matter?
What is at stake in calling extreme, end-stage anorexia nervosa (AN) a terminal condition? In this context, “terminal” is used in the broadest sense, that is, leading to death in a foreseeable length of time, not the narrower sense in which “terminal illness” is an eligibility requirement for medical aid-in-dying (MAID) or Medicare hospice reimbursement in the United States. In this broader sense, calling extreme AN a terminal condition may be thought to have implications for end-of-life decisions, such as the refusal of life-prolonging treatment or voluntarily stopping eating and drinking (VSED). I will argue that this is a mistake, although one that needs explanation.
Patients with extreme AN are natural candidates for hastening death by VSED. Normally VSED requires those who pursue it to be sufficiently decisive and determined to overcome a strong natural desire to eat and drink. Patients with severe AN, however, do not want to eat. In fact, they want not to eat.
Vigorous discussion of whether it is appropriate to classify extreme AN as a clinically terminal illness was initiated in 2022 in the Journal of Eating Disorders by Guadiani, Bogetz, and Yager. They argued that such patients may be regarded as terminal even though they might again eat enough to survive without being force-fed. And if their condition is terminal, it is difficult to defend force-feeding them. Several commentators disagreed, among them Guarda et al., and the controversy recently attracted coverage in the Washington Post.
Since AN is a mental illness, some call into question whether patients with the condition have the decision-making capacity needed to assert their right to stop eating and drinking. On the other hand, even with a mental illness, supporting the patients in extreme AN in refusing to eat and drink may be easier to defend if their condition is terminal.
The situation is murky, indeed. Can it be clarified? I believe it can.
1. To start with, competent patients have the moral and legal right to refuse food and water by mouth, just as they do to refuse lifesaving treatment. The decision-making capacity required is not exemplary rationality or freedom from all compulsions or misconceptions, only an understanding of the patient’s own condition, of the treatments and assistance with food and drink that are available, and of the consequences, including death, of refusing them.
2. Exercising this right is generally not dependent on whether the patient’s condition is terminal. The right to VSED and to refuse lifesaving treatment still apply, for example, to those with chronic conditions that are not terminal. One might then infer that the whole controversy about whether to deem extreme AN a terminal condition is largely irrelevant. Ultimately, terminal does not do the definitive moral work; the patient’s voluntary, informed consent does. The issue, though, is still substantively significant. For one thing, the further away from naturally dying the refusing patients are, the more caution is in order in deciding whether to accept their refusal. Other details, too, need to be noted.
3. In addition, a condition can be terminal even when the patient’s decision makes it such. In hospice eligibility, for example, deliberately refusing life-extending cancer treatment does not disqualify a patient from her prognosis being terminal. Similarly, AN patients’ refusal to eat does not bar their condition from being terminal.
4. AN is not rendered significantly different because it is tied up with the person’s very identity. Angela Guarda and Cynthia Bulik have argued that since AN is tied closely to the person’s very identity, when AN patients refuse food or treatment, it their illness, not they themselves, that is speaking. It is a weak argument. If an AN patient defines her very self in part by her AN, then when she speaks, of course her illness is speaking. Or turn it around. Suppose that her illness is speaking, then given the close identification, she, too, is speaking.
5. Lack of good research on a psychiatric illness like AN is no reason to deny patients the right to refuse food and drink. Steven Dunn, whose daughter died as a result of severe anorexia, has argued that since research on psychiatric conditions like extreme AN is currently thin, we do not have to abide by patients’ death- hastening refusals. Comparisons, though, refute this argument. If a person afflicted with a relatively new virus, for example, refuses the available, partially effective treatment, we should still withhold the treatment even if research on the condition is in its infancy. Some patients may want to hang on in the hope that something more effective is around the corner, but if they do not, we should not impose the available treatment on them. In the case of extreme AN, moreover, we have little reason to think that significantly better treatment is around the corner.
6. At some point, enough is enough. Even if therapy or feeding can initially be forced on such patients, that does not mean caregivers may resort to it indefinitely. Guardini and colleagues push the question to those who want to continue forced therapy: when is enough enough? The questionable decision-making capacity of patients with severe AN may justify force-feeding for a limited time, but if they are obviously suffering, how long is such coercion justified? They are, after all, able to understand that not eating will lead to death, and they understand the treatment or feeding that has been imposed on them. In these circumstances, accepting their refusal is the compassionate and respectful thing to do.
Whether to regard severe end-stage AN as terminal is a less important issue than most parties to the controversy have assumed. But whether such AN is appropriately characterized as terminal, the justifications offered for force-feeding are weak.
Paul T. Menzel, PhD, is professor of philosophy emeritus of Pacific Lutheran University and the co-editor, with Timothy Quill, Thaddeus Pope, and Judith Schwartz, of Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death (Oxford University Press, 2021). His most recent book, with Bonnie Steinbock, is Bioethics: What Everyone Needs to Know (Oxford University Press, 2023).