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

Abstract

Gaudiani et al. (2022) presented terminal anorexia nervosa (T-AN) as a potential new specifier to the anorexia nervosa (AN) diagnosis, with criteria including (a) AN diagnosis, (b) age . 30 years, (c) previously participated in high-quality care, and (d) the clear, consistent determination by a patient with decision-making capacity that additional treatment would be futile, knowing death will result. This study's purpose was to empirically examine a subgroup of participants with AN who met the first three criteria of T-AN-and a smaller subset who also met a proxy index of the fourth criterion involving death (TD-AN)and compare them to an adult "not terminal" anorexia nervosa (NT-AN) group and to a "not terminal" subset 30 years of age or older (NTO-AN). Patients at U.S. eating disorder treatment facilities (N = 782; T-AN: n = 51, TD-AN: n = 16, NT-AN: n = 731, NTO-AN: n = 133), all of whom met criteria for a current Diagnostic and Statistical Manual of Mental Disorders, 5th Edition diagnosis of AN, were compared regarding admission, discharge, and changes from admission to discharge on physiological indices (i.e., white blood cell counts, albumin levels, aspartate aminotransferase levels, and body mass index), as well as self-report measures (i.e., eating disorder, depression, anxiety, and obsessive-compulsive symptoms). In contrast to the tight syndromal symptom interconnections of, and inevitable spiral toward death expected for, a terminal diagnosis, results suggest substantial variability within the T-AN group and TD-AN subset, and an overall trend of improvement across physiological and self-report measures. This study thus provides some empirical evidence against the specification of the T-AN diagnosis.

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

“…Robison et al [ 25 ] recently analysed a retrospective cohort of individuals with AN in a higher level of care (HLOC) from admission to discharge who met the first three criteria for ‘terminal AN’ outlined by Gaudiani et al [ 6 ] (i.e., (a) AN diagnosis, (b) age 30 or older, (c) previously participated in high-quality care), and a subset of patients who also met a proxy index of the fourth criterion: (d) clear, consistent determination by a patient with decision-making capacity that additional treatment would be futile, knowing death will result [ 6 ] (for this study, patients endorsed desire for death in a self-report measure) [ 25 ]. The patients who met the proposed criteria for ‘terminal’ AN, including those in the subcategory, did not demonstrate a progressive, inevitable declining course of illness leading to death [ 25 ]. Furthermore, the “terminal” AN (including those who met the proxy for the fourth criterion) and “not terminal” AN groups were heterogeneous and did not significantly differ in physiological status and psychological self-report measures at admission and discharge.…”

“…Furthermore, the “terminal” AN (including those who met the proxy for the fourth criterion) and “not terminal” AN groups were heterogeneous and did not significantly differ in physiological status and psychological self-report measures at admission and discharge. An overall trend of improvement across physiological and self-report measures, provided some empirical evidence against the ‘terminal AN’ diagnosis [ 25 ].…”

“…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.…”

“…Recently, a set of criteria was created, attempting to conceptualise ‘terminal anorexia nervosa’ [ 4 – 6 ], which has been widely critiqued, including by individuals with lived experience [ 7 – 18 ], and other clinician-researchers [ 19 – 25 ]. We value the contributions of these diverse perspectives and intend to contribute to these topics by considering how the conceptualisation of terminality 2 is informed by corresponding conceptualisations of recovery, treatment response, and quality-of-life.…”