Background People with longstanding eating disorders (also referred to as severe and enduring eating disorders) and their families, carers and communities, face challenging and often traumatic realities. Current care pathways for eating disorders often fall short in meeting their multifaceted and complex needs, highlighting the need for alternative approaches. Developing and implementing new care pathways to address these needs requires interdisciplinary collaboration involving stakeholders from both the eating disorder and palliative care sectors, encompassing lived experience, clinical and research expertise. To address this issue, the National Eating Disorders Collaboration (NEDC) commissioned a co-produced, lived experience-led discussion paper, ‘Holding Hope—Exploring Compassionate & Holistic Care Pathways for Longstanding Eating Disorders’ (Calvert et al., 2023).

Aims The aim of this discussion paper is to explore and address the complex challenges of palliative care for longstanding eating disorders. The discussion paper acknowledges and describes the complex landscape of longstanding eating disorders and palliative care, advocating for alternative care pathways that are distinct from end-of-life care or voluntary assisted dying. Ultimately, the discussion paper aims to support efforts to develop and implement guidance on the use of palliative care for eating disorders, emphasising compassion, person-centredness, quality of life, autonomy and dignity throughout the illness journey.

Methods The development of the discussion paper involved a literature review and consultations with people with lived experience, their families and supports and professionals across national and international eating disorder and palliative care sectors. The literature review explored key lived experience, clinical and research perspectives and priorities and identified gaps, challenges and facilitators to implementing palliative care for longstanding eating disorders. The consultations, which spanned from 2017 to the present, explored the applicability and need for palliative care for those affected by longstanding eating disorders.

Results The discussion paper advocates for the development of guidelines for the provision of palliative care for longstanding eating disorders. Drawing on the findings from the literature review and consultations, the paper outlines a list of fundamental principles to inform these guidelines: leading with lived experience, person-centred care planning, interdisciplinary collaboration, workforce competence, ethical practice, supportive care networks, robust research and evaluation and public awareness.

Conclusion A transformative shift in care pathways for longstanding eating disorders is needed, including the integration of palliative care, to address the multifaceted and complex needs of this group. The discussion paper calls for guidelines addressing the recommended principles to be developed through critical and courageous dialogue and action across the eating disorder and palliative care sectors and with people with lived experience. People with longstanding eating disorders, their families, supports and communities deserve access to compassionate and holistic care pathways that reshape care experiences and address a long-neglected aspect of palliative care.