Gaudiani Jennifer L, Bogetz Alyssa, Yager Joel
CEDS-S, FAED, Gaudiani Clinic, Denver, CO, USA.
Department of Psychiatry, University of Colorado School of Medicine, Aurora, CO, USA.
J Eat Disord. 2022 Feb 15;10(1):23. doi: 10.1186/s40337-022-00548-3.
Most individuals with eating disorders will either recover, settle into an unrecovered but self-defined acceptable quality of life, or continue to cycle from crisis to relative stability over time. However, a minority of those with severe and enduring eating disorders recognize after years of trying that recovery remains elusive, and further treatment seems both futile and harmful. No level of harm reduction proves achievable or adequately ameliorates their suffering. In this subgroup, many of those with anorexia nervosa will experience the medical consequences of malnutrition as their future cause of death. Whereas anyone who wishes to keep striving for recovery despite exhaustion and depletion should wholeheartedly be supported in doing so, some patients simply cannot continue to fight. They recognize that death from anorexia nervosa, while perhaps not welcome, will be inevitable. Unfortunately, these patients and their carers often receive minimal support from eating disorders health professionals who are conflicted about terminal care, and who are hampered and limited by the paucity of literature on end-of-life care for those with anorexia nervosa.
Three case studies elucidate this condition. One patient was so passionate about this topic that she asked to be a posthumous co-author of this paper.
Consistent with literature on managing terminal illness, this article proposes clinical characteristics of patients who may be considered to have a terminal eating disorder: diagnosis of anorexia nervosa, older age (e.g. age over 30), previous participation in high quality care, and clear and consistent determination by a patient who possesses decision-making capacity that additional treatment would be futile, knowing their actions will result in death. By proposing the clinical characteristics of terminal anorexia nervosa, we hope to educate, inspire compassion, and help providers properly assess these patients and provide appropriate care. We hope that this proposal stimulates further expert consensus definitions and clinical guidelines for management of this population. In our view, these patients deserve the same attendant care and rights as all other patients with terminal illness, up to and including medical aid in dying in jurisdictions where such care is legal.
大多数饮食失调患者要么康复，要么进入虽未康复但自我定义为可接受的生活质量状态，要么随着时间推移在危机与相对稳定之间循环往复。然而，少数患有严重且持久饮食失调症的患者在多年尝试后认识到康复仍然遥不可及，进一步治疗似乎既徒劳又有害。任何程度的伤害减轻都无法实现，也无法充分缓解他们的痛苦。在这个亚组中，许多神经性厌食症患者将经历营养不良的医学后果，这将成为他们未来的死因。虽然任何希望不顾疲惫和精力耗尽继续努力康复的人都应该得到全心全意的支持，但有些患者就是无法继续抗争。他们认识到神经性厌食症导致的死亡虽然可能不受欢迎，但将不可避免。不幸的是，这些患者及其护理人员往往从饮食失调健康专业人员那里得到的支持极少，这些专业人员在临终关怀方面存在矛盾，并且由于关于神经性厌食症患者临终关怀的文献匮乏而受到阻碍和限制。
三个案例研究阐明了这种情况。一名患者对这个话题非常热情，她要求成为这篇论文的死后合著者。
与关于晚期疾病管理的文献一致，本文提出了可能被认为患有晚期饮食失调症患者的临床特征：神经性厌食症的诊断、年龄较大（例如30岁以上）、以前参与过高质量护理，以及具有决策能力的患者明确且一致地认定额外治疗将是徒劳的，因为他们知道自己的行为将导致死亡。通过提出晚期神经性厌食症的临床特征，我们希望进行教育、激发同情心，并帮助医疗服务提供者正确评估这些患者并提供适当的护理。我们希望这一提议能促使针对这一人群的进一步专家共识定义和临床指南的出台。我们认为，这些患者应享有与所有其他晚期疾病患者相同的护理和权利，直至并包括在相关护理合法的司法管辖区接受医疗协助死亡。
