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Should severe and enduring anorexia nervosa ever be considered 'terminal'?

November 7, 2023

Anorexia nervosa has the hightest mortality rate of any psychiatric disorder; as many as 20% of individuals with chronic anorexia die as a result of their illness. Sufferers are also 18 times more likely to die by suicide compared with others in the same gender and age groups.

Yet there's almost no literature that provides guidance to patients, clinicians, and loved ones regarding the clinical characteristics of those with severe and enduring anorexia nervosa (SE-AN) who recognize and accept the fact that they will not be able to survive their disease. 

As a result, access to palliative and hospice care for such patients can be problematic.

In February 2022, Jennifer L. Gaudiani, a Denver internist and the former medical director at the Acute Center for Eating Disorders in Denver, a facility that specializes in treating patients with severe eating disorders, co-published an article in the Journal of Eating Disorders calling for eating disorder experts and palliative care specialists to develop clinical guidance for the management of this population.

In her article, she described the clinical characteristics of three patients with what she proposed as “terminal anorexia nervosa,” a rare subset of SE-AN defined as those patients who 1) have a diagnosis of anorexia; 2) are at least 30 years of age; 3) have engaged in “high-quality, multidisciplinary eating disorder care," and (4) demonstrate that they understand continued treatment is futile and that they will die from their disorder.

In defining "terminal anorexia nervosa"—a clinical definition not included in the DSM-5 and not even agreed upon within the eating disorders community—Dr. Gaudiani raised many controversial medical ethics questions, including whether or not patients who suffer from severe anorexia are competent to make decisions about their own health.

In the U.S., physician-assisted suicide, also known as medical aid in dying, or MAID, is legal in 10 states and in Washington, D.C. but it doesn’t apply to psychiatric conditions. In fact, the American Psychiatric Association and the American Medical Association say that a psychiatrist shouldn't prescribe or administer any intervention to a “non-terminally ill person for the purpose of causing death.”

However, the legal situation is different in other countries. Canada has had assisted dying laws in place since 2016 and was ready to legalize Medical Aid in Dying (MAID) for psychiatric illness this past March, but postponed legislation until March 2024.

Some eating disorder experts and bioethicists question whether anorexia—a supposedly treatable illness—can be considered terminal. They note that with the exception of bone density loss, nearly all other issues are reversible with time and nourishment. They express concerns about how MAID could ever apply given that the disorder itself affects the thinking and judgment of the person. Indeed, MRI scans of people with anorexia show a brain that has shrunk dramatically due to lack of nutrition. Researchers have also found that the genetic basis of anorexia nervosa overlaps with other psychiatric disorders such as depression, anxiety, OCD, and schizophrenia.

Proponents of MAID say that in certain cases, the psychic and physical suffering of anorexia and its treatment—forcing a patient to keep enduring repeated cycles of ineffective treatment such as force feedings for many years—can be a form of torture and requires a more compassionate response.

In September 2022, Dr. Gaudiani co-authored a response in the Journal of Eating Disorders to published critiques of the original article, specifically those relating to the label “terminal anorexia” and the proposed criteria for it. 

In May of this year, she further co-authored a response to a letter that criticized her original article for not considering racial inequities in terms of obtaining care. Rates for eating disorders are rising among males and people of color, who are typically less likely to receive assistance for their illnesses.

Sources:

Ellin, A. (2023, November 1) The Washington Post. Should anorexia ever be called 'terminal'? https://www.washingtonpost.com/style/of-interest/2023/11/01/anorexia-suicide-controversy-jennifer-gaudiani/

Arnold, C. (2023, July 13). The Guardian. Some anorexia patients want the right to die. A few doctors are willing to listen. https://www.theguardian.com/society/2023/jul/13/anorexia-right-to-die-terminal-mental-health

Gaudiani JL, et al. (2022, February 15). J Eat Disord. Terminal anorexia nervosa: three cases and proposed clinical characteristics. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8845309/pdf/40337_2022_Article_548.pdf

Gaudiani JL, et al. (2022, September 26). J Eat Disord. Eating disorders and palliative care specialists require definitional consensus and clinical guidance regarding terminal anorexia nervosa: addressing concerns and moving forward. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9450436/pdf/40337_2022_Article_659.pdf