Tragically, some people with severe and enduring (SE) eating disorders (EDs) e.g. (terminal) anorexia nervosa (AN), may experience traumatic deaths due to a lack of recognition of their need for palliative care, or their specific needs within a palliative care context (Gaudiani et al 2022). 

 

There has been increasing debate as to whether people experiencing life-limiting complications from SE-EDs should have equitable human rights to receive palliative care. Furthermore, there is a need to upskill the health and mental health workforce to, a) provide quality palliative care and b) best support individuals with life-limiting/terminal EDs and their loved one/s. Evidence from multi-disciplinary teams and lived experiences showed that those receiving palliative care for life-limiting EDs experienced an improved quality of life and momentous relief no longer requiring frequent and sometimes traumatic life-saving interventions.

Aims:

- Share a lived experience perspective on the paradox of quality of life versus recovery with a severe and enduring ED.

- Discuss how taking a system approach will look for treating palliative care in eating disorders.

- Identify opportunities to upskill treating teams to provide compassionate, trauma-informed care for people with life-limiting/terminal EDs.

- Highlight the need for ethical decision-making on a case-by-case basis when determining if palliative care is/is not an appropriate pathway of care e.g., age, symptoms, history, and access to evidence base treatment. 

- Recommendations for discussing options of care with the individual and their loved one/s.

Conclusion:

Recognizing the complexity and burden of this ethical dilemma, a palliative care discussion paper has been co-designed to synthesize clinical, research and lived experience perspectives, to support community and health professionals understand what palliative care and end-of-life support means for people with life-limiting EDs. The paper will form the foundation for developing Palliative Care Guidelines for life-limiting/terminal EDs.