From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosa

Abstract Anorexia nervosa carries one of the highest mortality rates among psychiatric disorders, yet care pathways for individuals with longstanding, treatment-resistant illness continue to pose significant challenges. Drawing on scholarly critique, lived-experience perspectives, and recent shifts...

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Main Authors: Maryrose Bauschka, Anne Marie O’Melia
Format: Article
Language:English
Published: BMC 2025-08-01
Series:Journal of Eating Disorders
Subjects:
Online Access:https://doi.org/10.1186/s40337-025-01350-7
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author Maryrose Bauschka
Anne Marie O’Melia
author_facet Maryrose Bauschka
Anne Marie O’Melia
author_sort Maryrose Bauschka
collection DOAJ
description Abstract Anorexia nervosa carries one of the highest mortality rates among psychiatric disorders, yet care pathways for individuals with longstanding, treatment-resistant illness continue to pose significant challenges. Drawing on scholarly critique, lived-experience perspectives, and recent shifts in clinical stance, most notably Dr. Jennifer Gaudiani’s formal published disavowal of the term “terminal anorexia nervosa”, this commentary proposes forward-looking strategies across four domains: terminology, capacity assessment, systemic supports, and integrated care frameworks. We advocate replacing deterministic labels with descriptive terms that honor recovery potential and the full spectrum of patient experience. We examine challenges in evaluating decision-making capacity among individuals with ego-syntonic illnesses, especially when severely malnourished, recommend standardized, multidisciplinary, decision-specific protocols, and acknowledge that patients can retain capacity to make informed choices even when severely ill from an eating disorder. We review systemic barriers, including uneven access to specialized services and the impact of clinician moral distress, and suggest institutional supports such as ethics consultation and peer supervision. Finally, we outline an integrated model that combines specialized eating disorder treatment with palliative principles grounded in supported decision-making, emphasizing autonomy and hope. Research and training priorities include standardizing capacity-assessment tools, developing curricula on clinician resilience and ethics, evaluating outcomes of combined palliative-eating disorder interventions, and co-creating guidelines with lived-experience stakeholders. By focusing on actionable next steps, this commentary aims to guide ethical discourse and strengthen compassionate, equitable care for those who decline recommended interventions.
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spelling doaj-art-249d060d46ec4b39ba19bd4615832dcd2025-08-20T04:01:42ZengBMCJournal of Eating Disorders2050-29742025-08-011311410.1186/s40337-025-01350-7From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosaMaryrose Bauschka0Anne Marie O’Melia1Department of Psychiatry, University of Utah School of MedicineDepartment of Psychiatry, University of Utah School of MedicineAbstract Anorexia nervosa carries one of the highest mortality rates among psychiatric disorders, yet care pathways for individuals with longstanding, treatment-resistant illness continue to pose significant challenges. Drawing on scholarly critique, lived-experience perspectives, and recent shifts in clinical stance, most notably Dr. Jennifer Gaudiani’s formal published disavowal of the term “terminal anorexia nervosa”, this commentary proposes forward-looking strategies across four domains: terminology, capacity assessment, systemic supports, and integrated care frameworks. We advocate replacing deterministic labels with descriptive terms that honor recovery potential and the full spectrum of patient experience. We examine challenges in evaluating decision-making capacity among individuals with ego-syntonic illnesses, especially when severely malnourished, recommend standardized, multidisciplinary, decision-specific protocols, and acknowledge that patients can retain capacity to make informed choices even when severely ill from an eating disorder. We review systemic barriers, including uneven access to specialized services and the impact of clinician moral distress, and suggest institutional supports such as ethics consultation and peer supervision. Finally, we outline an integrated model that combines specialized eating disorder treatment with palliative principles grounded in supported decision-making, emphasizing autonomy and hope. Research and training priorities include standardizing capacity-assessment tools, developing curricula on clinician resilience and ethics, evaluating outcomes of combined palliative-eating disorder interventions, and co-creating guidelines with lived-experience stakeholders. By focusing on actionable next steps, this commentary aims to guide ethical discourse and strengthen compassionate, equitable care for those who decline recommended interventions.https://doi.org/10.1186/s40337-025-01350-7Terminal anorexia nervosaSevere and enduring anorexia nervosaSE-ANPalliative careMedical aid in dying
spellingShingle Maryrose Bauschka
Anne Marie O’Melia
From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosa
Journal of Eating Disorders
Terminal anorexia nervosa
Severe and enduring anorexia nervosa
SE-AN
Palliative care
Medical aid in dying
title From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosa
title_full From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosa
title_fullStr From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosa
title_full_unstemmed From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosa
title_short From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosa
title_sort from disavowal to dialogue forging collaborative ethical clinical and medical approaches to severe and enduring anorexia nervosa
topic Terminal anorexia nervosa
Severe and enduring anorexia nervosa
SE-AN
Palliative care
Medical aid in dying
url https://doi.org/10.1186/s40337-025-01350-7
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