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

IF 4.5 3区 医学 Q2 NUTRITION & DIETETICS
Maryrose Bauschka, Anne Marie O'Melia
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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.

从否认到对话:锻造协作伦理,临床和医学方法严重和持久的神经性厌食症。
神经性厌食症是精神疾病中死亡率最高的疾病之一,然而,对于患有长期难治性疾病的个体来说,治疗途径仍然面临着重大挑战。借鉴学术评论、生活经验观点和近期临床立场的转变,最值得注意的是Jennifer Gaudiani博士正式发表的对“晚期神经性厌食症”一词的否认,本评论提出了四个领域的前瞻性策略:术语、能力评估、系统支持和综合护理框架。我们提倡用描述性术语取代确定性标签,以尊重恢复潜力和患者体验的全部范围。我们研究了评估患有自我同步疾病的个体决策能力的挑战,特别是当严重营养不良时,推荐标准化的,多学科的,决策特定的方案,并承认患者即使患有严重的饮食失调,也可以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不平等和临床医生道德困境的影响,并建议了伦理咨询和同行监督等制度支持。最后,我们概述了一个综合模型,将专门的饮食失调治疗与基于支持决策的姑息原则相结合,强调自主性和希望。研究和培训重点包括使能力评估工具标准化,开发临床医生适应能力和道德方面的课程,评估姑息性饮食失调联合干预措施的结果,以及与有实际经验的利益攸关方共同制定指南。通过关注可操作的后续步骤,本评论旨在指导道德话语,并加强对那些拒绝推荐干预措施的人的同情和公平护理。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Journal of Eating Disorders
Journal of Eating Disorders Neuroscience-Behavioral Neuroscience
CiteScore
5.30
自引率
17.10%
发文量
161
审稿时长
16 weeks
期刊介绍: Journal of Eating Disorders is the first open access, peer-reviewed journal publishing leading research in the science and clinical practice of eating disorders. It disseminates research that provides answers to the important issues and key challenges in the field of eating disorders and to facilitate translation of evidence into practice. The journal publishes research on all aspects of eating disorders namely their epidemiology, nature, determinants, neurobiology, prevention, treatment and outcomes. The scope includes, but is not limited to anorexia nervosa, bulimia nervosa, binge eating disorder and other eating disorders. Related areas such as important co-morbidities, obesity, body image, appetite, food and eating are also included. Articles about research methodology and assessment are welcomed where they advance the field of eating disorders.
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