Source: Alex Schadenberg, via Euthanasia Prevention Coalition

Reprinted with permission.

In a recent article published by Reuters, a 47-year-old Canadian woman with anorexia nervosa (AN) tells a reporter that when an expansion of the criteria for medically assisted death comes into effect in March 2024, she plans to apply for medical aid in dying (MAID). Lisa Pauli, who has suffered from AN for many decades, stated that she goes days without eating solid food. She characterized every day as “hell,” and noted, “I’m so tired. I’m done. I’ve tried everything. I feel like I’ve lived my life.” However, it is worth noting that 3 issues received scant attention in the article: the types of treatment she had tried, the extent to which any comorbid psychiatric conditions (such as depression) had been treated, and whether she even has mental capacity to make this decision.

Proponents of MAID, otherwise known as physician-assisted suicide (PAS)—the term preferred by the American College of Physicians and used in the American Medical Association Code of Ethics—cite “terminal anorexia” as a new, valid construct justifying MAID for individuals with severe, longstanding AN. Terminal anorexia has been recently applied to individuals who:

(a) have a diagnosis of AN and are age 30 or older;

(b) have had prior, persistent engagement in high quality, multidisciplinary eating disorder treatment;

(c) express a clear, consistent wish to stop trying to prolong their lives;

(d) possess adequate decision-making capacity;

(e) understand that further treatment of AN will be futile; and

(f) accept that death will be the natural outcome of discontinuing treatment.

But is terminal anorexia a valid construct? Several eating disorder experts, with decades of experience in the field, have opined that this term cannot adequately be defined and should therefore not be used.

Regarding criterion (a)—that, to be considered terminal, an individual must be 30-years-old or older—Mack et al noted that it is a commonly held myth that older individuals cannot recover from AN. Both Mack et al and Guarda et al cited the longitudinal study by Eddy et al, indicating that, while individuals with AN may not recover in the first 5 to 10 years of their illness, two-thirds of individuals with AN had recovered after 22 years.

Interestingly, the mean age of participants in the Eddy et al study was 47—the same age as Lisa Pauli. It is thus concerning that Ms Pauli’s recovery would be deemed impossible. While the term terminal is certainly well-established in certain medical spheres of health care, those conditions entail clear, objective parameters establishing that an end-stage illness is untreatable and that death is naturally imminent, even in the face of continued treatment for the underlying illness. Examples include certain cancers; end-stage cirrhosis; heart failure; or multiple organ failure (MOF) from sepsis. Such objective parameters have no parallel in AN.

The second criterion (b) is “prior persistent engagement in high quality multidisciplinary eating disorder treatment.” Individuals in the case report in which Gaudiani used the term, terminal anorexia do not appear to have had such treatment; eg, 2 brief inpatient stays before leaving against medical advice; failure to complete residential treatment; and lack of full weight restoration. This may also be the case with Pauli, who apparently was hospitalized on only 2 occasions for her longstanding eating disorder. There are 2 additional factors which make the inclusion of the “prior persistent treatment” criterion concerning. First, individuals with eating disorders are frequently ambivalent regarding treatment, and often completely opposed to it, given the necessary but distressing emphasis on weight restoration. Second, there is commonly a lack of access to high quality multidisciplinary treatment. Sharpe et al pointed out that Gaudiani et al presupposed that high quality treatment exists and is accessible to all individuals with AN. This, according to Sharpe et al, is “discordant with our experiences as patients, clinicians and peer advocates within systems of ED treatment.”

Both fiscal and societal pressures may also not favor costly treatment for a chronic mental health condition. In Canada, it may take 4 months to enroll in any mental health treatment and as much as 417 days to receive specialized eating disorder treatment. The more expeditious option of MAID (90 days for patients whose death is not imminent, and immediate approval for those whose death is termed imminent) may appeal to those who have become hopeless. Even more concerning is the potential appeal of MAID to contain cost and deal with waitlists for mental health care. A glaring example of this was a patient who presented to an emergency department in Vancouver with suicidal ideation. Her goal that day was simply to keep herself safe and be admitted to the hospital. However, given the long wait time to see a psychiatrist, the evaluating clinician asked if she had considered MAID for her psychiatric illness. She was told of another patient who had reportedly found “relief in death.” The hospital subsequently apologized to the patient.

Similarly, in response to the proposed definition of terminal anorexia, Elwyn—an individual with lived experience of severe and enduring AN—reflected on how receiving a terminal diagnosis would substantially increase an individual’s sense of burdensomeness; decrease their sense of meaningfulness; and (along with decreasing any hope of recovery) decrease attempts at seeking help. All of these factors, in addition to commonly co-occurring depression and anxiety, may actually increase risk for suicide, whether medically assisted or via other methods.

Regarding criteria (c) through (f)—ie, the person expresses a clear, consistent wish to stop trying to prolong their life; has adequate decision-making capacity; understands that further treatment will be futile; and accepts that death will be the natural outcome of discontinuing treatment—several caveats are in order. First, individuals with severe eating disorders frequently lack decisional capacity. To be sure: there is a difference between a decision that seems illogical versus one arising from lack of capacity. But while AN is not synonymous with decisional incapacity, it is nonetheless troubling that a decision with an irreversible outcome is being made by an individual with questionable decision-making capacity, particularly in cases of severe AN.

The delusional level of cognitive distortions regarding food and body image is the irrational lens through which the decision to refuse treatment and to seek MAID is filtered. Accordingly, the clinician who assumes that the patient has the capacity to consent to assisted suicide (rather than seeking further treatment) is not relieving the patient’s suffering, but is actually furthering and colluding with the disease itself. This is especially true when individuals with AN are highly ambivalent about recovery.

Furthermore, that MAID appears to be not just offered but encouraged exploits the ambivalence that is intrinsic to AN. As noted by Geppert, given that decisional capacity is almost always regained with weight restoration, are we not then obligated to treat an individual so that they are able to regain capacity? In severe AN, involuntary treatment provided by a behavioral inpatient specialty program can be lifesaving—and when effective, is often met with gratitude by patients.

Back to Lisa Pauli. Although we have not personally examined Ms Pauli, the fact that she reports minimal prior treatment for her eating disorder; that recovery is not impossible at age; that there is no mention of strategies to treat comorbid mental illness; and that, being undernourished, she may well lack capacity, all argue against her illness being terminal and MAID being her only option.

Instead, efforts should be directed toward improving access to care in the United States and Canada for individuals with eating disorders, rather than providing “a form of state-assisted suicide,” as a Canadian psychiatrist described it. Even if a curative approach were not possible in Ms Pauli’s case, both harm reduction and palliative care are options for managing AN and its comorbidities. These interventions could lead to enhanced quality of life, even if that life proved to be shorter than anticipated; and would also give individuals like Ms Pauli the option of exploring a curative approach in the future.

The notion of providing MAID for an individual in whom a so-called terminal illness cannot be accurately defined, is both troubling and unjustifiable. As psychiatrists in the United States, we owe it to our patients to join with legislators who fight for equitable access to mental health care. Psychiatrists must strive to provide high-quality, evidence-based care, and to hold out hope for our patients until they can do so themselves. When further treatment after judicious deliberation and consultation appears unproductive or unwarranted, let us provide comfort and support—not take steps to provide the suicide some patients seek.

Header image: Photo by Elena Leya on Unsplash

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Other EPC links:
Anorexia is not a terminal condition
When I was Anorexic I would have chosen assisted suicide
ANAD clarifies that Anorexia Nervosa is not a terminal condition

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