Living Well Until the End
Co-producing guidance for end-of-life care for people with anorexia nervosa
Context
People with severe and enduring anorexia nervosa often experience years of intensive treatment, repeated hospital admissions, and, in some cases, coercive interventions such as involuntary hospitalization or tube feeding. While these interventions can be lifesaving, some individuals continue to experience profound suffering despite extensive treatment attempts. In recent years, end-of-life care has been proposed for rare and exceptional cases of severe anorexia nervosa. However, these discussions have taken place largely among clinicians, ethicists, and researchers. The perspectives of people with lived experience of anorexia nervosa and their support persons have rarely been included.
About the project
This project builds guidance for end-of-life care for people with anorexia nervosa from the expertise gained from living with the disorder or supporting somebody living with the disorder. It aims to identify areas of agreement and disagreement regarding questions such as:
- How do people with lived experience and their support persons perceive the idea of an end-of-life care pathway for anorexia nervosa?
- Which considerations should guide the design and implementation of such a pathway?
The results will inform ongoing discussions at the University Hospital Zurich and contribute to broader reflection on mental health care, palliative care, and patient involvement in decision-making.
Project phases
This project uses Delphi methodology to achieve its aims. People with lived experience of anorexia nervosa and their support persons will be invited to participate in several anonymous Delphi rounds. In each round, participants will contribute their perspectives about end-of-life care in this context and review contributions from the group. Between rounds, the research team will analyze and synthesize participant contributions. Through this iterative process, statements about values, priorities, and structures relevant to end-of-life care for people with anorexia nervosa will be developed and refined, identifying areas of agreement and disagreement within the group.
Participate in the project
Two members of the core research team will contribute their lived experience throughout the research cycle. Further people with lived experience are invited to participate in the online Delphi process. Participants will gain a structured forum for reflection and learning and a sense of contributing to meaningful discussions on a particularly complex aspect of mental healthcare. The results of the project will be made visible through a range of co produced dissemination formats, tailored to public, professional, and academic audiences. Also, they will directly inform clinical practice at the University Hospital Zurich.
