{"title":"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。","authors":"Maryrose Bauschka, Anne Marie O'Melia","doi":"10.1186/s40337-025-01350-7","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":48605,"journal":{"name":"Journal of Eating Disorders","volume":"13 1","pages":"166"},"PeriodicalIF":4.5000,"publicationDate":"2025-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12323254/pdf/","citationCount":"0","resultStr":"{\"title\":\"From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosa.\",\"authors\":\"Maryrose Bauschka, Anne Marie O'Melia\",\"doi\":\"10.1186/s40337-025-01350-7\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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.</p>\",\"PeriodicalId\":48605,\"journal\":{\"name\":\"Journal of Eating Disorders\",\"volume\":\"13 1\",\"pages\":\"166\"},\"PeriodicalIF\":4.5000,\"publicationDate\":\"2025-08-04\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12323254/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Eating Disorders\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1186/s40337-025-01350-7\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"NUTRITION & DIETETICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Eating Disorders","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1186/s40337-025-01350-7","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"NUTRITION & DIETETICS","Score":null,"Total":0}
From disavowal to dialogue: forging collaborative ethical, clinical, and medical approaches to severe and enduring anorexia nervosa.
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.
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.