Downs James
Patient Representative, Faculty of Eating Disorders, Royal College of Psychiatrists, UK.
BJPsych Bull. 2024 Jun;48(3):177-181. doi: 10.1192/bjb.2023.38.
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.
饮食失调在历史上一直未得到充分的医疗服务,但如今却日益普遍,且因其在死亡率、生活质量和经济方面的高昂代价而受到关注。那些患有长期饮食失调症的人通常被贴上“严重且持久”(SEED)的标签,这一标签因其概念模糊以及可能使患者气馁而受到质疑。近年来,将这一群体中的个体定义为患有“晚期”疾病的尝试也越来越受到关注。本文基于实际生活经历和相关研究。它对“严重且持久”这一概念的逻辑连贯性和实用性提出了质疑,认为“持久”这个词将长期疾病的棘手性不恰当地归因于患者自身及其疾病的本质。这有可能给人一种不可避免的感觉,并忽视了诸如缺乏资源和缺乏停止积极治疗的充分证据等背景因素的重要作用。建议提出了消除早期干预与强化支持、康复与衰退之间无益二分法的方法。