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从否认到对话:打造针对严重及持续性神经性厌食症的协作性伦理、临床和医学方法。

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

作者信息

Bauschka Maryrose, O'Melia Anne Marie

机构信息

Department of Psychiatry, University of Utah School of Medicine, Salt Lake City, UT, 84108, USA.

出版信息

J Eat Disord. 2025 Aug 4;13(1):166. doi: 10.1186/s40337-025-01350-7.

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.

摘要

神经性厌食症在精神疾病中死亡率极高,然而,针对患有长期难治性疾病的个体的护理途径仍然面临重大挑战。借鉴学术批评、生活经验视角以及临床立场的最新转变,最显著的是珍妮弗·高迪亚尼博士正式发表声明否认“终末期神经性厌食症”这一术语,本评论在四个领域提出了前瞻性策略:术语、能力评估、系统支持和综合护理框架。我们主张用描述性术语取代确定性标签,这些术语尊重康复潜力和患者的全部体验。我们审视了评估自我和谐型疾病患者决策能力时面临的挑战,尤其是在严重营养不良的情况下,推荐标准化、多学科、针对特定决策的方案,并承认即使患有严重饮食失调疾病,患者仍能保留做出明智选择的能力。我们回顾了系统性障碍,包括获得专业服务的机会不均以及临床医生道德困扰的影响,并建议提供伦理咨询和同行监督等机构支持。最后,我们概述了一个综合模型,该模型将专门的饮食失调治疗与基于支持性决策制定的姑息治疗原则相结合,强调自主性和希望。研究和培训重点包括标准化能力评估工具、开发关于临床医生复原力和伦理的课程、评估姑息治疗与饮食失调综合干预的效果,以及与有生活经验的利益相关者共同制定指南。通过关注可采取行动的下一步措施,本评论旨在引导伦理讨论,并加强对那些拒绝推荐干预措施的患者的同情、公平护理。

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本文引用的文献

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Camb Q Healthc Ethics. 2024 Oct 28:1-12. doi: 10.1017/S0963180124000367.
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Terminal anorexia nervosa cannot currently be identified.
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