Caring for Patients With Severe and Enduring Eating Disorders (SEED): Certification, Harm Reduction, Palliative Care, and the Question of Futility
Anorexia nervosa is a serious mental illness with a high mortality rate. The body image distortion inherent to this disorder and the impaired judgment and cognition due to malnutrition frequently result in patients refusing treatment. Treatment is most effective if patients are treated early in the course of their illness and undergo a full course of treatment. Involuntary treatment may therefore be both life-saving and critical to recovery. Between April 2012 and March 2016, 109 patients (5.2% of patients admitted to the Eating Recovery Center in Denver, CO) were certified, 39% of whom were transferred from the ACUTE Center for Eating Disorders at Denver Health Medical Center. Of these 109 certified patients, 31% successfully completed treatment, and 42% returned for a further episode of care; 24% of the certifications were terminated as involuntary treatment was not found to be helpful. Conclusions supported by these data are that patients with anorexia nervosa who are the most medically ill often require involuntary treatment. In addition, although many patients who are certified successfully complete treatment, involuntary treatment is not helpful approximately 25% of the time. Many of the patients for whom certification is ineffective are those who suffer from a lifetime of illness that is severe and enduring. Patients with severe and enduring eating disorders (SEED) typically undergo cyclical weight restoration and weight loss. Many of these patients question the value of serial treatments, especially when they have few (if any) illness-free intervals. Patients, families, and treating physicians often wish to explore other models of care, including harm reduction and palliative care. In addition, patients with SEED may also contemplate whether a compassionate death would be better than an ongoing lifetime of suffering. In this review, we outline arguments for and against the concept of futility in SEED, and explore whether (or when) patients are competent to make the decision to die.