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A lived-experience exploration of harm and hope: should eating disorders ever be diagnosed as ‘terminal’?

The following article contains material that may be harmful or traumatising to some audiences.

What are some of the ethical and social justice issues involved in diagnosing an eating disorder as ‘terminal’?

Anorexia nervosa is both mental health and physiological condition that effects all bodily systems. It carriers an extremely high risk of death from medical complications or death by suicide. Treatments for anorexia nervosa have lower efficacy compared to other eating disorders, and further research is needed into more innovative treatments. While many individuals do recover, others continue to be affected by their illness. A smaller group of individuals remain severely ill, and may be diagnosed as having ‘severe-enduring anorexia nervosa’. Some clinicians and researchers have proposed that a subgroup of those with severe-enduring anorexia nervosa go on to develop a stage of illness that should be regarded as ‘terminal’. They argue that a ‘terminal’ diagnosis should exist in order to facilitate greater access for these patients to end-of-life care: hospice, palliative care, and physician-assisted suicide/medical-assistance in dying.

However, this proposed diagnosis raises a number of significant concerns, not only for eating disorders, but those that can be applied to other mental health conditions more broadly.

What are some of the ethical and social justice issues involved in diagnosing an eating disorder as ‘terminal’? What happens when an individual is repeatedly traumatised through the mental health system, and doesn’t respond to treatment? The linked article is written from the author’s lived experience perspective of having severe-enduring anorexia nervosa, and explores the impact of psychiatric diagnosis and giving a person the prognosis of ‘intractable’ and ‘terminal’. It also discusses the interrelationship of trauma, treatment experiences, ambivalence, suicidality, and hope.


About the writer

Rosiel Elwyn (they/she) is a lived-experience, intersectional and feminist researcher. They are also a PhD student at the Thompson Institute (University of the Sunshine Coast), researching the neurobiology of anorexia nervosa, with a focus on the impacts of trauma, the gut microbiome, and interoceptive function. Rosiel has a background in peer support work, and outside of research and mental health work and advocacy, has a love for cephalopods, mushrooms and fungi.

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