First, do no harm: the proposed definition of “terminal anorexia” is fraught with danger for vulnerable individuals

Riddle, Megan; O’Melia, Anne; Bauschka, Maryrose

doi:10.1186/s40337-022-00605-x

Cited by 13 publications

(13 citation statements)

References 14 publications

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“…Based on these two articles [ 5 , 6 ] and anonymous review comments, we identified critical responses or concerns (presented in italics) that can be grouped into five categories, each of which we address separately. Our analysis reveals that the critiques of our presentations all rest on substantially questionable premises.…”

Section: Resultsmentioning

confidence: 99%

“…Since publication of our article, to identify specific concerns about our proposals, a supplemental literature review was conducted through PubMed to collect relevant response articles in the subsequent literature. Two titles met inclusion criteria: Guarda et al [ 5 ] and Riddle et al [ 6 ]. Additional concerns were derived from comments provided by anonymous reviewers in response to our submitted manuscripts.…”

Section: Methodsmentioning

confidence: 99%

“…Since our article appeared, several criticisms of both the criteria and the concept of terminal AN have been published [ 5 , 6 ]. Despite these critical misgivings, the facts remain that unrelenting AN has a high mortality rate and that eating disorder specialists and palliative care specialists remain underprepared to guide end-of-life care in this population.…”

Section: Introductionmentioning

confidence: 99%

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

Yager

Gaudiani²,

Treem

2022

J Eat Disord

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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.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Yager

Gaudiani²,

Treem

2022

J Eat Disord

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“…Another new mental health issue for this population involves the term "terminal AN. " While criteria for "terminal AN" have recently been proposed and may be cited in the ED as justification for refusal of life-saving treatment, it is crucial to recognize that at this time, there are no evidence-based criteria to support a diagnosis of "terminal AN" [13][14][15]. Data suggest that recovery can occur even after decades of this illness [16].…”

Section: Emergency Psychiatric Issuesmentioning

confidence: 99%

Emergency room presentations of people with anorexia nervosa

et al. 2023

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People with anorexia nervosa (AN) tend to shy away from engaging in typical primary care provider relationships in order to avoid detection. Therefore, they may seek care for their medical concerns through a local emergency department (ED). Inherently, AN is associated with a litany of medical complications, which become more prevalent as the severity of their eating disorder increases. Notwithstanding the typical young age at the onset of AN, no body system is immune to these medical complications. Thus, ED providers may need to pursue a medical diagnosis in order to explain presenting symptoms in people with AN. In addition to the medical issues, AN is also a serious mental illness with high mortality rates, including deaths by suicide. Therefore, ED providers also need to be familiar with relevant mental health issues for these people.

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“…Since that time, five papers have been published cautioning about the use of the term “terminal AN” (Guarda et al, 2022; Riddle et al, 2022; Mack & Stanton, 2022; Elwyn, 2023; Downs et al, 2023), and Drs Yager and Gaudiani along with another colleague have published a response (2022). This is an important and unavoidably controversial topic requiring careful consideration and debate.…”

Section: Introductionmentioning

confidence: 99%

Terminal anorexia nervosa cannot currently be identified

Crow

2023

Intl J Eating Disorders

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Objective: To review the recent literature on the proposed entity of "terminal anorexia nervosa."Method: Review of recent literature on the concept of "terminal AN" as well as past and supporting work. Results:The cases and proposed definitions are reviewed, as is the growing literature on this topic. Problems exist with predicting outcomes and thus, determining futility, as well as about capacity for decision-making.Discussion: To make decisions about treatment futility, the existing database for predicting AN course and treatment response must expand greatly. In addition, while decisional capacity is central to the debate, its determination may be unusually complex in this situation. The gaps identified point to extensive needs for future research, but they also indicate that the concept of "terminal AN" cannot be defined at present and should not be used.Public Significance: Anorexia nervosa is challenging to treat, and it often lasts for years. There is debate about whether palliative care or medical aid in dying should be considered. Identifying who has a terminal case of AN is important for this question, but we have limited ability to predict a given individual's outcome at present, and there are concerns about the ability of those with AN to make treatment decisions. This means the concept of "terminal AN" should not currently be used.

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First, do no harm: the proposed definition of “terminal anorexia” is fraught with danger for vulnerable individuals

Cited by 13 publications

References 14 publications

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

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

Emergency room presentations of people with anorexia nervosa

Terminal anorexia nervosa cannot currently be identified

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