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.