Terminal anorexia nervosa cannot currently be identified

Abstract

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.

Involuntary treatment: A qualitative study from the perspectives of individuals with anorexia nervosa

“…The authors suggest that patients with AN who are over 30, have received high quality care, and have decision-making capacity to refuse further treatment, knowing that this decision will end in their death, should have access to medical aid in dying, where legal. Others have argued that terminal anorexia nervosa is a dangerous term that robs patients of hope that they can improve (Crow, 2023;Guarda et al, 2022) and is at odds with findings that individuals with AN can recover up to 22 years after the onset of their illness (Eddy et al, 2017). The current study suggests that involuntary treatment may be a helpful alternative rather than assisting those with AN in ending their life.…”

Discordant conceptualisations of eating disorder recovery and their influence on the construct of terminality

“…Trachsel et al [ 156 ] suggests a ‘staging’ model to mental illness may be useful in identifying when psychiatric treatment can switch from ‘curative’ goals, but they “would not call persons with SPMI ‘terminally ill’” [ 156 , p. 3]. As previously stated, in contrast to other mental illnesses, individuals with EDs are often described as ‘treatment resistant’ even though efficacious treatments are lacking; and, notably, a ‘terminal’ stage of AN has already been proposed [ 6 ], although a uniquely ‘terminal’ stage of AN is currently unsubstantiated [ 22 , 25 , 77 ].…”

“…McCartney and Trau (1990) suggest that a terminal illness should be defined as a condition that, “to a reasonable degree of certainty, there can be no restoration of health, and which, absent artificial life-prolonging procedures, will inevitably lead to natural death” [ 180 , p.438]. Notably, these definitions may be applied to illnesses where prognosis – while never certain – can be determined with greater certainty than is possible with EDs [ 22 , 23 , 25 , 77 ]. Additionally, determining ‘restoration of health’ is challenging given the aforementioned differences in conceptualising recovery for EDs.…”

“…EDs, particularly AN, have high mortality [ 181 ]. However, the medical sequelae of AN are incomparable to conditions typically regarded as terminal (e.g., amyotrophic lateral sclerosis, some cancers; [ 22 , 24 ]), which have “clear, objective parameters” [24, para.5] that may lead to death. Hypoglycemia, electrolyte imbalances, and cardiac arrhythmias are among the medical complications of AN, which can be fatal [ 182 , 183 ] but are often abrupt, difficult to predict [ 184 ] and can be reversible with medical care and nutrition [ 25 , 185 ].…”

“Terminal anorexia nervosa” may not be terminal: An empirical evaluation.

“…To the best of our knowledge, six papers thus far have already been published in response, raising several concerns with this newly discussed construct of T-AN. First, the ability to define “terminal” in the context of AN was raised as a potential problem (Crow et al, 2023; Guarda et al, 2022; Riddle et al, 2022). Second, Riddle et al (2022) and Guarda et al (2022) suggest that some individuals with T-AN, as defined by Gaudiani et al (2022), may have a treatable illness.…”