Eating disorders and palliative care specialists require definitional consensus and clinical guidance regarding terminal anorexia nervosa: addressing concerns and moving forward

Abstract

Abstract Background and objectives Premature deaths are estimated to occur in 5–20% of patients with anorexia nervosa (AN). Among them, some patients with severe and enduring anorexia nervosa (SE-AN) will die due to the medical complications of malnutrition or to suicide. Almost no literature provides guidance to patients, clinicians, and loved ones regarding clinical characteristics of those with SE-AN who recognize and accept the fact that they will not be able to survive their disease. Consistent with general medical literature on terminal illness and based on the authors’ work with patients at this phase of life, we previously described four clinical characteristics of the small group of SE-AN patients who may be considered to have a terminal eating disorder. Following publication of this article, several opinions objecting to these formulations were published. The goals of this article are to respond to the key themes of concern posed by these objections, to extend our discussion of the palliative care and associated needs of these patients and their families, and to suggest ways in which the eating disorder and palliative care fields might develop more definitive criteria and consensus guidelines for the assessment and management of these patients. Methods Based on a selective narrative review of the literature, our combined experiences with these patients, and clinical reasoning, we address critiques grouped around five major themes: that (1) labels such as terminal AN are dangerous; (2) since AN is a treatable disorder, no SE-AN patients should be considered terminal; (3) a terminal psychiatric condition cannot be defined; (4) the proposed definition is not specific enough; and (5) considerations regarding mental capacity in the proposed criteria do not sufficiently account for the psycho-cognitive impairments in AN. Results Our analysis responds to the critiques of our original proposed clinical characteristics of those with terminal AN. While refuting many of these critiques, we also appreciate the opportunity to refine our discussion of this complex topic and identify that there are multiple stages of SE-AN that can result in good clinical outcomes. Only when all of these have failed to provide adequate amelioration of suffering do a low number of patients progress to terminal AN. Conclusions By further refining our discussion of terminal AN, we aim to encourage eating disorders and palliative care specialists to develop expert consensus definitions for terminal AN and to generate authoritative clinical guidance for management of this population. By validating terminal AN as a distinct condition, patients with this subcategory of SE-AN, their families, and their caregivers facing end-of-life concerns may be better able to access palliative and hospice care and related services to help improve their overall experiences at this phase of life.