Landmark study: Assisted death for eating disorders.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

A landmark study by Chelsea Roff and Catherine Cook-Cottone titled: Assisted death in eating disorders: a systematic review of cases and clinical rationales, was published by Frontiers in Psychiatry on July 30, 2024. Both authors are experts in the treatment of eating disorders (EDs).

Chelsea Roff recovered from
a serious eating disorder

The authors provided a systematic review of cases of euthanasia or assisted suicide for eating disorders by examining the assisted dying reports from jurisdictions that have legalized euthanasia and/or assisted suicide. The authors use the term assisted death because it encapsulates both euthanasia, the act of the physician or nurse, and assisted suicide, the prescribing of the lethal drugs whereby the person must self-administer.

The authors uncover at least 60 cases of assisted death based on eating disorders. There may be many more but countries, such as Canada, don't publish data that would enable them to uncover all of the assisted deaths for eating disorders.
The first sections of the study provide an excellent explanation of how the different assisted death laws work throughout the world. Some jurisdictions, such as several US states, have legalized assisted suicide for "terminally" ill people, whereas other jurisdictions have legalized euthanasia for people who are not terminally ill and the law may include euthanasia for reasons related to mental illness.

To emphasize the difficulty in uncovering data on assisted death cases the authors wrote:

Out of 27 jurisdictions where assisted dying is legal, a recent study found only 16 regularly published reports, and most only provide limited demographic data. Only two jurisdictions identify the number of patients referred for psychiatric evaluation, and none provide information about psychiatric diagnoses at the time of patients’ requests. It is therefore not possible to determine how many patients with EDs have undergone assisted death internationally because data for the vast majority of assisted death cases are not available for public inspection.

The authors set out to uncover and study the data and stories that existed. They wrote:

Although there have been a flurry of commentaries on recent reports of patients with EDs who were prescribed MAiD, there has been no systematic effort to identify and aggregate known cases of assisted death in patients with EDs internationally. Further, little is known about the clinical rationales physicians have used to justify assisted death in these patients. This systematic review aims to aggregate known cases of assisted death in patients with EDs, identify the jurisdictions in which they have occurred, and systematically review the clinical rationales which have been used to justify assisted death in these cases.

The authors identify the outcome of their research. They authors write:

We identified 10 peer-reviewed articles and 20 government reports describing at least 60 patients with EDs who underwent assisted dying between 2012 and 2024. Note that this figure does not represent the total number of patients with EDs who have undergone assisted dying in countries where it is legal. It represents only those which were identifiable via the limited data available in public reports. Of these 60 cases, we identified descriptive case summaries for 19 patients: 17 underwent euthanasia in the Netherlands, and 2 were prescribed MAiD in the United States.

It is important to note that all of the identified case reports were deaths of women. The authors write:

Of the 60+ cases identified across all studies and reports, 19 included descriptive case summaries with information about the patients and the clinical rationales that were used to justify assisted death. All 19 patients were women. Specifically, 32% were under the age of 30 (N = 6), 37% were between the ages of 30 and 50 (N = 7), and 31% were over 50 years old (N = 6). 61% (N = 11) had been diagnosed with anorexia, one person was described as obese (but her ED was not specified), and 28% (N = 5) had EDs (but the specific diagnoses were not identified).

Based on this data, I suggest that those with eating disorders who died by assisted death could be defined as medically abandoned. The authors wrote:

Notably, 58% of patients were described as chronically suicidal, with 37% having made multiple past suicide attempts. Depression was extremely common; 89% of the patients were described as depressed, and over half were described as having poor social functioning. Self-injury (32%), psychotic symptoms (16%), dissociation (11%), and substance abuse (11%) were also reported in many patients. More than a quarter of patients were described as experiencing flashbacks and nightmares, and 63% reported symptoms of anxiety.

The authors report that the case reports justified an assisted death for the following reasons:

The length of time the person had been ill was used as a rationale for assisted death in 95% of all ED cases. Clinicians emphasized the person’s prognosis was poor in 89% of cases, and in 58% of cases, the person’s condition was deemed irremediable “according to prevailing medical opinion.” The failure of past treatments to produce lasting change was used to justify assisted death in 89% of cases. Nearly half, or 47%, of cases stated that healing/cure was not possible for the patient.

In 47% of the cases, terms like “chronic ED” or “severe and enduring anorexia” were cited to justify assisted dying. Patients’ conditions were described as “treatment-resistant” in 42% of cases. In 47% of cases, clinicians either rejected or dismissed existing treatment options, in some cases describing them as an “undue burden” on the patient (26% of cases). Additionally, in 11% of cases patients had been rejected or prematurely discharged from previous treatment attempts. Treatment futility was only cited in the two United States cases.

The authors further state:

The consistency of the request was emphasized in 100% of cases. In two cases (11%), the patient had previously changed their mind or pushed back the date of their assisted death. In all but one case, the patients’ request was described as well-considered, and 84% of cases emphasized the patient was well-informed about their choices.

In 95% of the cases, it was asserted the person had decision-making capacity to end their life through assisted death. Notably, 68% of cases reported the individual as severely underweight or malnourished at the time of their request. Previous physicians had declined the patient’s request for assisted death in 42% of cases. In 26% of cases, the patient’s intelligence was explicitly mentioned as evidence of mental capacity. Similarly, over a quarter of the clinicians (26%) stressed that the patient’s request to die was not a symptom of mental illness. Respect for the individual’s autonomy and choice to die was highlighted in 53% of the cases.

In the discussion session the authors state the following:

Of the 198 Dutch cases where it was possible to discern a psychiatric diagnosis, 16 (8.7%) were patients with eating disorders.

Notably, among the cases reviewed for this paper, 100% of patients who underwent assisted death for an ED were female. Studies typically show 69-77% of people who die by psychiatric euthanasia are women. Although more research is needed to detail gender among the larger population of those with EDs requesting assisted death, these findings suggest the possibility that women may be over-represented. Accordingly, it is important to investigate the potential role gender bias plays in euthanasia evaluations.

Based on the fact that in 2023 there were 138 Netherlands euthanasia deaths based on a psychiatric condition. This study found that, of the known cases, approximately 8.7% of the psychiatric diagnosis were based on eating disorders. Therefore there may have been as many as 11 Netherlands euthanasia deaths based on eating disorders in 2023 alone. 

The authors question the oversight for assisted death laws.

Notably, California and Colorado’s annual reports showed no record of the two aforementioned deaths described by Gaudiani et al. The manager of the Colorado’s Vital Statistics Program confirmed that anorexia has been reported as a terminal condition in previous years and reported in the undefined category of Other Illnesses. Crucially, he stated that CDPHE lacks authority to investigate potentially suspicious reports if there are concerns a prescriber may be misrepresenting a psychiatric illness as a terminal condition. This raises significant concerns about the inadequacies of current safeguards to ensure public safety, especially for vulnerable groups.

The study - Assisted death in eating disorders: a systematic review of cases and clinical rationales is the first of likely many studies that will happen.

The authors of the study have responded by promoting a Joint Statement Against Assisted Suicide for Eating Disorders (Link). I encourage every interested organization to promote and sign the Joint Statement.

Similar to the authors, I question the terminal diagnosis for people with eating disorders. Unlike other medical conditions, such as late state cancer, eating disorders can always be treated.

Finally, I expect several pro-euthanasia researchers to challenge this study. Nonetheless, I agree with Dr Mark Komrad who called this study:

one of the most important, and frankly landmark studies regarding assisted suicide and euthanasia

This is the first of several articles that I will be writing on this study.