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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).

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  1. capacity may include not only “understanding” but freedom. AN has elements of compulsion that compromise the chooser’s freedom to act, to eat. The element of “enough is enough” reveals the author’s experience . Those who have shared that experience of tough cases will recognize that one can recognize it when they see it.

  2. Great article and perspective, a terminal medical condition and it´s evaluation is the critical point on discussing Assisted death

  3. Thank you, Dr. Menzel, for this insightful conversation on end-of-life ethics in severe and enduring anorexia nervosa (SE-AN). You certainly present a “murky” dilemma here.

    First, I’d like to challenge the notion, argued by some, that those with mental illness lack decision-making capacity, even in the case of SE-AN and the decision to refuse eating and drinking. Someone with SE-AN may still be able to understand the relevant treatment information, appreciate consequences, reason through treatment options, and communicate a choice despite their mental illness. This highlights the ethical imperative of providers to utilize a tool to determine capacity for specific decisions, as opposed to discounting a patient’s decision-making capacity given the conditions of their illness. As you emphasized, patients with capacity have the moral and legal right to refuse nutrition and hydration, and providers have a moral and ethical requirement to respect these wishes.

    Moreover, I agree with your point that a lack of research in AN is not an excuse to deny patients their autonomy. Importantly, palliative care and end-of-life decisions are well represented in research, albeit not regarding AN. This differs from limitations on new medications, for example, in which providers are legally barred from prescribing medications in the early phases of FDA testing due to a lack of evidence. Considering VSED is legal nationwide provided the patient has capacity (or a designated proxy), U.S. providers have a legal obligation to fulfill this wish even if it is sparsely studied for this illness. It would be unethical to postpone a patient’s wishes in anticipation of alternative treatment options.

    While you make a sound argument for prioritizing the patient’s autonomy in cases of SE-AN, it is important to consider the complicated relationship between mental health care and autonomy. There are many instances in which patient autonomy is temporarily limited to promote positive mental health outcomes, such as involuntary hospitalization. Because mental illness can interfere with insight and judgment, these procedures are valuable for patient safety. While therefore morally appropriate to enforce short-term, providers should question the ethicality of long-term enforcement of such restrictions to autonomy, especially when patient health outcomes are not improving. To your point, when is enough enough? At what point do we recognize the limitations of our treatment plans and reinstate patient autonomy?

    Presently, the field of mental health care seems unprepared to make a firm decision on this issue given the controversy and lack of practice guidelines for establishing a patient’s condition as palliative (i.e., revoking treatments and instead promoting comfort and autonomy). Nonetheless, mental health providers can minimize some of the uncertainty surrounding treatment decisions by eliciting patients’ treatment preferences before an illness becomes severe and enduring. To best prioritize patients’ autonomy in these circumstances, in a legally and ethically sound manner, mental health providers can encourage and assist patients in documenting their treatment wishes and delineating a healthcare proxy early in the treatment process. Finally, regardless of whether the terminology of “terminal anorexia” is adopted, further research and guidance are certainly warranted for navigating long-term AN treatment in an ethical manner.

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