Stakeholder views on the proposed criteria for 'terminal anorexia': a mixed-methods study

The proposed criteria for "terminal anorexia nervosa" (T-AN) by Gaudiani et al. (2022) sparked controversy within the eating disorder (ED) community. This study aimed to explore the perspectives of key stakeholders (individuals with lived experience, caregivers, and ED clinicians) on these criteria, which include: (1) an AN diagnosis, (2) age 30 or older, (3) prior engagement in high-quality treatment, and (4) consistent expression of treatment futility by an individual with decision-making capacity. A mixed-methods design was used, with up to 219 participants completing quantitative Likert-scale items and up to 182 completing qualitative open-ended questions. Data were analyzed using descriptive statistics and thematic analysis. Participants expressed more negative views or disagreement with three of the four criteria, particularly the age requirement (22.4% disagreed, 38.8% strongly disagreed). The fourth criteria received the most agreement (21.6% strongly agree, 25.2% agree). Overarching qualitative themes included ethical concerns; potential for harm; respect for autonomy; challenges in determining prognosis, capacity and futility; treatment issues; and the need for systemic reform over terminal labeling. While most were critical of T-AN, a subset of participants expressed support for elements of the framework, particularly in relation to autonomy and the alleviation of suffering. Overall, the data revealed that many participants engaged with the broader question of whether T-AN should be defined at all, rather than only evaluating the proposed criteria. Instead of a terminal prognosis, more participants advocated for systemic changes. These findings underscore the need for clear, consensus-driven terminology and a focus on patient-centered, ethically grounded care.