Inaccessibility of care and inequitable conceptions of suffering: a collective response to the construction of “terminal” anorexia nervosa

Abstract

Abstract Informed by our lived experiences with eating disorders, our work providing direct support to communities underserved by existing healthcare structures, and our commitment to social justice, we are deeply troubled by several aspects of the proposed characteristics for “terminal” anorexia nervosa outlined by Gaudiani et al. in Journal of Eating Disorders (10:23, 2022). We have identified two substantial areas of concern in the proposed characteristics provided by Gaudiani et al. and the subsequent publication by Yager et al. (10:123, 2022). First, the original article and the subsequent publication fail to adequately address the widespread inaccessibility of eating disorder treatment, the lack of parameters for what constitutes “high quality care”, and the prevalence of trauma experienced in treatment settings for those who do access treatment. Second, the characteristics proposed for “terminal” anorexia nervosa are constructed largely based on subjective and inconsistent valuations of suffering which build on and contribute to harmful and inaccurate eating disorder stereotypes. Overall, we believe these proposed characteristics in their current form stand to detract from, rather than assist, the ability of patients and providers to make informed, compassionate, and patient-centered decisions about safety and autonomy both for individuals with enduring eating disorders and for individuals with more recently diagnosed eating disorders.

Keywords

• Anorexia nervosa
• Eating disorders
• Lived experience
• Peer support
• Medical aid in dying
• Standards of care