A lived experience response to the proposed diagnosis of terminal anorexia nervosa: learning from iatrogenic harm, ambivalence and enduring hope

Abstract

The ethical approach to treatment non-response and treatment refusal in severe-enduring anorexia nervosa (SE-AN) is the source of significant ethical debate, particularly given the risk of death by suicide or medical complications. A recent article proposed criteria to define when anorexia nervosa (AN) can be diagnosed as ‘terminal’ in order to facilitate euthanasia or physician-assisted suicide (EAS), otherwise known as medical assistance in dying, for individuals who wish to be relieved of suffering and accept treatment as ‘futile’. This author utilises their personal lived experience to reflect on the issues raised, including: treatment refusal, iatrogenic harm, suicidality and desire to end suffering, impact of diagnosis/prognosis, schemas, alexithymia, countertransference, ambivalence, and holding on to hope. Within debates as critical as the bioethics of involuntary treatment, end-of-life and EAS in eating disorders, it is crucial that the literature includes multiple cases and perspectives of individuals with SE-AN that represent a wide range of experiences and explores the complexity of enduring AN illness, complex beliefs, communication patterns and relational dynamics that occur in SE-AN.

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

“…Elwyn [ 6 ] additionally highlights the circular logic Gaudiani et al use to conceptualize characteristic (3).We share their concern that characteristic (3) increases the likelihood that individuals who have not previously had access to “good quality” treatment will be labeled as “terminal” and therefore be less able to access quality treatment in the future, as the terminal prognosis would be seen to render further treatment futile [ 1 , 6 ]. Yager et al claims to advocate against setting a particular standard or duration for “high quality care” in order to “protect” [ 5 , p. 6] underserved populations.…”

“…Traumatic, coercive, and ill-suited experiences while in ED treatment are common [ 16 , 18 – 21 ] and can directly produce the conditions that make continued attempts at recovery feel impossible and ineffective later in life, as occurred in case study 2 provided by Gaudiani et al [ 1 ] and as was extensively detailed by Elwyn [ 6 ]. To an extent, ED treatment intentionally challenges tolerability as it includes changing behaviors and reframing cognitions that often develop as coping strategies to contend with trauma, oppression, and/or co-occurring mental and physical illnesses.…”

“…However, they attribute these intolerances to the “highly sensitive” features of these individuals rather than acknowledging them as symptoms of systemic problems within the ED treatment field. While not treated in the US HLOC system, Elwyn describes how coercive and traumatic treatment experiences actively exacerbated the utility and foundational beliefs of their ED and directly produced subsequent unwillingness to engage in further treatment [ 6 ]. This is an example of iatrogenically-mediated progression of long-term EDs.…”

“…Iatrogenic harm in the context of ED care can produce a vicious cycle where prior traumatic treatment may preclude future willingness to engage in treatment, making outpatient clinicians reluctant or unwilling to work with individuals who they deem too high risk [ 63 ]. In turn, this may increase the likelihood of involuntary treatment [ 2 , 6 , 61 ], contribute to further traumatic treatment experiences, increase the likelihood of clinical assessment of futility, exacerbate feelings of hopelessness, burdensomeness, and meaninglessness, and result in the potential entrenchment of these recurrences as inevitable [ 6 ]. We believe it is essential to evaluate, at every stage of an individual’s ED, whether true quality care has ever been previously accessible before engaging with conceptualizations of futility, treatment resistance, and terminal prognosis.…”

“…Several groups of clinicians published responses expressing their concerns with this proposed list of characteristics [ 2 – 4 ] to which Yager et al responded with a comment published in J Eat Disord 10(1):135 2022 addressing these critiques and further arguing for the utilization of these characteristics for “terminal” AN [ 5 ]. Following the publication by Yager et al, Rosiel Elwyn responded in the Journal of Eating Disorders 11(1):2 2023 extensively detailing their perspective as an individual with living experience of severe and enduring anorexia nervosa 1 (SE-AN) [ 6 ]. They emphasized caution related to the context, impacts, and potential for harm surrounding the proposed “terminal” AN characteristics.…”