Cited by 82Eating Disorders and BehaviorsPalliative Care and End-of-Life IssuesPalliative and Oncologic Care

Terminal anorexia nervosa: three cases and proposed clinical characteristics

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Gaudiani, Jennifer L., Bogetz, Alyssa, Yager, Joel·2022·Journal of Eating Disorders

Abstract

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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Crossref · 10.1186/s40337-022-00548-3

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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)

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  • 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.

    “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)

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  • At 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 measured
  • Some 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 measured
  • 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.

    “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

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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)
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
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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