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

Abstract

Informed by our lived experiences with eating disorders, our work providing direct support to communities underserved by existing healthcare structures, and our commitment to social justice, we are deeply troubled by several aspects of the proposed characteristics for “terminal” anorexia nervosa outlined by Gaudiani et al. in Journal of Eating Disorders (10:23, 2022). We have identified two substantial areas of concern in the proposed characteristics provided by Gaudiani et al. and the subsequent publication by Yager et al. (10:123, 2022). First, the original article and the subsequent publication fail to adequately address the widespread inaccessibility of eating disorder treatment, the lack of parameters for what constitutes “high quality care”, and the prevalence of trauma experienced in treatment settings for those who do access treatment. Second, the characteristics proposed for “terminal” anorexia nervosa are constructed largely based on subjective and inconsistent valuations of suffering which build on and contribute to harmful and inaccurate eating disorder stereotypes. Overall, we believe these proposed characteristics in their current form stand to detract from, rather than assist, the ability of patients and providers to make informed, compassionate, and patient-centered decisions about safety and autonomy both for individuals with enduring eating disorders and for individuals with more recently diagnosed eating disorders.

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

“…Individuals who present at higher weights, those considered not critically ill enough or too critically ill, patients who previously had poor treatment outcomes, or those with physical or psychiatric co-occurring diagnoses may be viewed as too complex, denied support [ 10 – 12 ], and/or directed towards a palliative or hospice care pathway [ 52 , 53 ]. These systemic restrictions [ 11 , 16 ] can prevent access to timely and appropriate care and, in many cases, access to any care at all [ 46 , 54 ] in ways that differ across national contexts [ 55 – 57 ]. These differences further complicate any attempts to create inclusive criteria for assessing ED recovery, staging, treatment responsiveness, or the potential for ‘terminality’ that are appropriate for individuals with diverse identities and experiences.…”

“…Iatrogenic harm may also occur via narratives in ED treatment and research, such as presenting recovery in an idealistic way or describing EDs as naturally ‘treatment resistant’ [ 98 , 99 ]. Iatrogenic harm experienced in ED treatment, provider expressions of hopelessness about a patient’s ability to heal, and a decreased quality-of-life can make living with the ED feel more tolerable than recovery [ 12 , 16 ]. Traumatic inpatient experiences have been described as destroying desire for recovery and instead, “putting the disease at my core” [ 100 , p.171].…”

“…Traumatic inpatient experiences have been described as destroying desire for recovery and instead, “putting the disease at my core” [ 100 , p.171]. A vicious cycle experienced by some individuals in which the cyclical nature of EDs, iatrogenic harm, trauma, prolonged illness, and co-occurring psychiatric diagnoses can compound and exacerbate one another has been described by multiple authors with lived experience [ 7 , 10 , 12 , 16 , 17 ]. In turn, this cycle may decrease the chance for hopefulness, make ED behaviours more difficult to change, thereby contributing to ED duration.…”

The importance of terminology, lived experience inclusion and scientific discussion regarding end-of-life care in anorexia nervosa: a response to Gaudiani et al.

“…The Gaudiani et al [ 1 ] paper proposing that we should consider if and how we should define ‘terminal AN’ has led to important discussions within our field, particularly giving individuals with lived experience an important platform to share their thoughts and concerns on this sensitive topic (e.g. [ 2 – 5 ]). Being a researcher without personal lived experience of AN, I have been reluctant to weigh in on the discussion as I would not be in the unenviable position of either a clinician or an individual with AN having to make decisions on ceasing treatment and pursuing end-of-life care if ‘terminal AN’ criteria were established.…”

“…Unlike other medical illnesses which can directly lead to death, illness course is much more complex and varied for mental illnesses and are not terminal in the same sense. The feedback from individuals with lived experience has also been loud and clear that this terminology is not appropriate, and the concept of ‘terminal AN’ has the potential to cause harm [ 2 – 5 ]. These authors have provided strong and well-reasoned arguments identifying the many issues that would result if ‘terminal AN’ criteria were determined—which I wholeheartedly agree with—including submitting to the ambivalence that is often present in terms of treatment and recovery, losing hope that recovery is possible, and that they are not deserving of treatment.…”