Terminal anorexia nervosa: three cases and proposed clinical characteristics
Open accessAbstract
BACKGROUND: Most individuals with eating disorders will either recover, settle into an unrecovered but self-defined acceptable quality of life, or continue to cycle from crisis to relative stability over time. However, a minority of those with severe and enduring eating disorders recognize after years of trying that recovery remains elusive, and further treatment seems both futile and harmful. No level of harm reduction proves achievable or adequately ameliorates their suffering. In this subgroup, many of those with anorexia nervosa will experience the medical consequences of malnutrition as their future cause of death. Whereas anyone who wishes to keep striving for recovery despite exhaustion and depletion should wholeheartedly be supported in doing so, some patients simply cannot continue to fight. They recognize that death from anorexia nervosa, while perhaps not welcome, will be inevitable. Unfortunately, these patients and their carers often receive minimal support from eating disorders health professionals who are conflicted about terminal care, and who are hampered and limited by the paucity of literature on end-of-life care for those with anorexia nervosa. CASE PRESENTATION: Three case studies elucidate this condition. One patient was so passionate about this topic that she asked to be a posthumous co-author of this paper. CONCLUSIONS: Consistent with literature on managing terminal illness, this article proposes clinical characteristics of patients who may be considered to have a terminal eating disorder: diagnosis of anorexia nervosa, older age (e.g. age over 30), previous participation in high quality care, and clear and consistent determination by a patient who possesses decision-making capacity that additional treatment would be futile, knowing their actions will result in death. By proposing the clinical characteristics of terminal anorexia nervosa, we hope to educate, inspire compassion, and help providers properly assess these patients and provide appropriate care. We hope that this proposal stimulates further expert consensus definitions and clinical guidelines for management of this population. In our view, these patients deserve the same attendant care and rights as all other patients with terminal illness, up to and including medical aid in dying in jurisdictions where such care is legal.
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There were no mentions of EDs in Colorado and California's reports, despite cases involving patients with EDs having been previously reported in the literature.
“There were no mentions of EDs in Colorado and California’s reports, despite cases involving patients with EDs having been previously reported in the literature (2).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
The Case presentations (Case 2: Jessica and Case 3: Alyssa; page unavailable) describe patients with anorexia nervosa who were prescribed medical aid-in-dying medications, supporting the claim that such cases had been reported in the literature. The paper does not establish whether Colorado’s or California’s reports mentioned eating disorders. (LLM, conf=0.86)
Experimental — accuracy not yet measuredThis may progress from an initial diagnosis of an ED to identification with a term like SEED or SE-AN, culminating in the perception of their condition as irremediable, and in some cases terminal.
“This may progress from an initial diagnosis of an ED to identification with a term like SEED or SE-AN, culminating in the perception of their condition as irremediable, and in some cases terminal (2).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
The Background describes severe and enduring anorexia nervosa (SE-AN), and the Discussion and Conclusions describe a small subset of patients who come to regard further treatment as futile and accept that their illness may be terminal. The paper does not describe patients progressively identifying with the labels SEED or SE-AN, and its proposed terminal designation applies specifically to anorexia nervosa, not eating disorders generally. The indexed passages provide section labels but no page numbers. (LLM, conf=0.84)
Experimental — accuracy not yet measuredAt least two of the patients who underwent assisted dying identified in this review had been previously rejected from treatment or discharged early.
“At least two of the patients who underwent assisted dying identified in this review had been previously rejected from treatment or discharged early (2022–85) (2).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
The Case presentations (Cases 2 and 3; pages unavailable) report that Jessica left residential treatment after two weeks and Alyssa was rejected by a residential program. But only Jessica took medical-aid-in-dying medication: Case 3 explicitly says Alyssa never ingested hers. The source therefore supports the treatment histories, not the claim that at least two patients who underwent assisted dying had those histories. (LLM, conf=0.88)
Experimental — accuracy not yet measuredSome jurisdictions now allow assisted dying for reasons solely related to a psychiatric disorder.
“Some jurisdictions now allow assisted dying for reasons solely related to a psychiatric disorder”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
The Case 3 presentation says Alyssa lived where medical aid in dying was legal and received a prescription while she had terminal anorexia nervosa. The proposed clinical characteristics section discusses access for patients with terminal anorexia who are severely physiologically compromised. Neither passage establishes that a psychiatric disorder alone qualifies someone for assisted dying. (LLM, conf=0.82)
Experimental — accuracy not yet measuredIn at least one case involving a person with an ED, a Colorado-based physician prescribed MAiD across state lines to a patient in California.
“In at least one case involving a person with an ED, a Colorado-based physician prescribed MAiD across state lines to a patient in California (2).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
In Case 3: Alyssa (page unavailable), the paper says Dr. G prescribed MAID medications to a patient with anorexia nervosa while based in a state other than the one in which she was licensed to prescribe. The Background places Dr. G’s clinic in Denver, Colorado, but our copy does not identify Alyssa’s state as California. (LLM, conf=0.85)
Experimental — accuracy not yet measured
One case study has been published in the United States, which described three patients, two of whom were prescribed MAiD - one in Colorado, and another who resided in California and received a prescription from a Colorado-based physician.
“One case study has been published in the United States (2), which described three patients, two of whom were prescribed MAiD — one in Colorado, and another who resided in California and received a prescription from a Colorado-based physician.”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
The Background describes three cases from a Denver, Colorado clinic. In Case 2 (Jessica), a palliative care physician prescribed MAID medication; in Case 3 (Alyssa), Dr. G prescribed it while based in another state. Our copy does not identify Jessica’s state of residence or Alyssa’s state as California, so it does not establish the specific locations claimed. (LLM, conf=0.86)
Experimental — accuracy not yet measuredIn the United States, at least four cases of assisted death in persons with EDs were identified.
“In the United States, where terminality is a legal criterion for MAiD, at least four cases of assisted death in persons with EDs were identified (2, 44)”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
The Case 2: Jessica section reports that Jessica took a MAID prescription, supporting one assisted death in a person with an eating disorder. Case 1: Aaron describes a death under hospice care, while Case 3: Alyssa explicitly says she never ingested her MAID medication. The paper does not identify at least four such deaths in the United States; the case sections have no page numbers in our copy. (LLM, conf=0.90)
Experimental — accuracy not yet measuredThe nuance that futility refers to a specific treatment rather than any treatment was lost in the cases described by Gaudiani et al., which emphasized that to be eligible for MAiD, patients must 'understand further treatment to be futile'.
“This nuance was lost in the cases described by Gaudiani et al. (2), which emphasized that to be eligible for MAiD, patients must “understand further treatment to be futile” (p. 11).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
The Discussion table and the Proposed clinical characteristics section say that a patient with terminal anorexia nervosa must consistently express an understanding that further treatment would be futile. They present this as a proposed characteristic of terminal anorexia nervosa, however, not as a requirement for MAID eligibility. The indexed passages have no page numbers. (LLM, conf=0.88)
Experimental — accuracy not yet measuredCases of assisted dying in patients with eating disorders have been documented in the United States, the Netherlands, and Belgium.
“cases have been documented in the United States (2), the Netherlands (6–10), and Belgium (11–13).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
Treatment futility was only cited in the two United States cases.
“Treatment futility was only cited in the two United States cases (2).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
Gaudiani et al. proposed that these patients represent a clinical subcategory of severe and enduring anorexia nervosa: terminal anorexia.
“Specifically, Gaudiani et al. (2) proposed these patients represent a clinical subcategory of SE-AN: terminal anorexia.”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
In cases in the United States, where a terminal prognosis is a legal prerequisite for assisted death, authors asserted that eating disorder patients prescribed MAiD had terminal conditions.
“In cases in the United States, where a terminal prognosis is a legal prerequisite for assisted death, authors asserted that ED patients prescribed MAiD had terminal conditions (2, 5).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
Gaudiani et al. suggested that two women with anorexia who were prescribed MAiD were eligible in part because they 'understand further treatment to be futile'.
“For instance, Gaudiani et al. (2) suggested that two women with anorexia who were prescribed MAiD were eligible in part because they “understand further treatment to be futile” (p. 11).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
California and Colorado's annual reports showed no record of the two deaths described by Gaudiani et al.
“Notably, California and Colorado’s annual reports showed no record of the two aforementioned deaths described by Gaudiani et al. (2).”
From Assisted death in eating disorders: a systematic review of cases and clinical rationales (2024) · cites this paper as [2]
In another of Gaudiani et al.'s cases, the patient was hospitalized for medical stabilization but thereafter declined admission to a residential program.
“another was hospitalized for medical stabilization but thereafter declined admission to a residential program.”
From Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined (2022) · cites this paper as [1]
In one of Gaudiani et al.'s cases, the patient spent 1-2 weeks in intensive treatment before leaving against medical advice.
“One patient spent 1–2 weeks in intensive treatment before leaving against medical advice”
From Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined (2022) · cites this paper as [1]
Two of the cases described by Gaudiani et al. were offered PAS without ever receiving adequate inpatient specialty care.
“Concerningly, two of the cases described by Gaudiani et al.[1], were offered PAS without ever receiving adequate inpatient specialty care.”
From Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined (2022) · cites this paper as [1]
In one case mentioned by Gaudiani et al., PAS was suggested by the treating author.
“In one case mentioned by Gaudiani et al.[1], PAS was suggested by the treating author”
From Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined (2022) · cites this paper as [1]
The first case presented by Gaudiani et al. appears to meet the standard for palliative care.
“The first case presented by the authors appears to meet this standard.”
From Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined (2022) · cites this paper as [1]
In another case mentioned by Gaudiani et al., the idea of treatment futility was reinforced despite the patient not completing a full course of intensive treatment.
“in another case the idea of treatment futility was reinforced despite the patient not completing a full course of intensive treatment.”
From Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined (2022) · cites this paper as [1]
The proposed characteristics for 'terminal' AN include AN diagnosis, age over 30, prior persistent engagement in high-quality multidisciplinary eating disorders care, and decision-making capacity to understand further treatment is futile, the wish not to prolong life, and acceptance of death.
“The proposed characteristics for ‘terminal’ AN included: (1) AN diagnosis (2) Age over 30, (3) Prior persistent engagement in high-quality, multidisciplinary eating disorders care, and (4) decision-making capacity to understand further treatment is futile, the wish not to prolong life and acceptance of death [1].”
From A lived experience response to the proposed diagnosis of terminal anorexia nervosa: learning from iatrogenic harm, ambivalence and enduring hope (2023) · cites this paper as [1]
Gaudiani et al. recently proposed preliminary criteria for 'terminal' anorexia nervosa, with three cases used to illustrate the defining criteria.
“Preliminary criteria for ‘terminal’ anorexia nervosa (AN) was recently proposed by Gaudiani et al. [1], with three cases used to illustrate the defining criteria.”
From A lived experience response to the proposed diagnosis of terminal anorexia nervosa: learning from iatrogenic harm, ambivalence and enduring hope (2023) · cites this paper as [1]
The logic of the proposed terminal diagnostic criteria becomes circular: if one has not had access to 'good quality' treatment, treatment inequity cannot exempt an individual from the criterion of prior persistent engagement in high-quality, multidisciplinary eating disorders care.
“This logic and argument becomes circular with regard to the proposed terminal diagnostic criteria—if one has not had access to ‘good quality’ treatment, how can treatment inequity exempt an individual from the terminal AN criterion: Prior persistent engagement in high-quality, multidisciplinary eating disorders care [1]?”
From A lived experience response to the proposed diagnosis of terminal anorexia nervosa: learning from iatrogenic harm, ambivalence and enduring hope (2023) · cites this paper as [1]
If an individual with a proposed terminal AN diagnosis changes their expression or wish for treatment, a diagnosis of terminal AN would no longer be justified.
“As Gaudiani et al. [1] have proposed a terminal AN diagnosis to have a fourth criterion for ‘consistent, clear expression by an individual who possesses decision-making capacity that they understand further treatment to be futile’, if an individual should change in their expression or wish for treatment, a diagnosis of terminal AN would no longer be justified.”
From A lived experience response to the proposed diagnosis of terminal anorexia nervosa: learning from iatrogenic harm, ambivalence and enduring hope (2023) · cites this paper as [1]
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References 27 · Cited by 82
- Authors
- Gaudiani, J. L., Bogetz, A., & Yager, J.
- Affiliations
- University of Colorado Anschutz (US)
- Corresponding author
- Gaudiani, Jennifer L.
- Venue
- Journal of Eating Disorders
- Published
- 2022-02-15
- Volume
- 10
- Issue
- 1
- Pages
- 23-23
- ISSN
- 2050-2974 (ISSN-L)
- PMC
- PMC8845309
- OpenAlex
- W4213181393
- Cited by
- 82
- References
- 27
- Citations by year
- 2026: 13 · 2025: 15 · 2024: 23 · 2023: 26 · 2022: 5
- FWCI
- 15.76
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- Journal of Eating Disorders (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Eating Disorders and Behaviors
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- end-of-life care, eating disorders, futility of treatment, medical assistance in dying, malnutrition, decision-making capacity, clinical features, palliative care
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