Care pathways for longstanding eating disorders must offer paths to recovery, not managed decline

Abstract

Eating disorders are historically underserved in healthcare, but are increasingly prevalent and recognised for their high costs regarding mortality, quality of life and the economy. Those with longstanding eating disorders are commonly labelled ‘severe and enduring’ (SEED), which has been challenged for its conceptual vagueness and potential to discourage patients. Attempts to define individuals from this cohort as having ‘terminal’ illness have also gained traction in recent years. This paper is grounded in lived/living experience and relevant research. It challenges the logical coherence and utility of SEED, arguing that the word ‘enduring’ unhelpfully situates intractability of longstanding illness within patients themselves and the nature of their illness. This risks a sense of inevitability and overlooks the important role of contextual factors such as lacking resources and insufficient evidence for withholding active treatment. Recommendations suggest approaches to dismantling unhelpful binaries between early intervention and intensive support, recovery and decline.

Keywords

• Anorexia nervosa
• eating disorders not otherwise specified
• bulimia nervosa
• patients
• nosology