Caring for Patients With Severe and Enduring Eating Disorders (SEED): Certification, Harm Reduction, Palliative Care, and the Question of Futility

Abstract

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.

Embodiment as a Paradigm for Understanding and Treating SE-AN: Locating the Self in Culture

“…Both run a risk of instilling guilt, creating unrealistic pressures to achieve, and compounding treatment failure. Recognizing the unintended consequences of asking too much or pushing too hard doesn't mean giving up (49), it means refocusing treatment toward harm minimization and quality of life. This involves letting go of clinical expectations to restore weight and minimize clinical symptoms, and focusing on the best ways to support people with SE-AN to have a quality of life.…”

Case Report: Unexpected Remission From Extreme and Enduring Bulimia Nervosa With Repeated Ketamine Assisted Psychotherapy

“…Nearly 30% of sufferers become chronically ill as a result ( 16 ). For such chronic refractory cases, the paucity of evidence-based treatments has prompted paradigm shifts toward harm reduction and palliative care over recovery ( 17 , 18 ).…”

Motivation to recover for adolescent and adult eating disorder patients in residential treatment

“…Limitations include the lack of follow‐up after discharge as well as using the DBS in an adolescent sample when it has been used but not validated in adolescents; future research should attempt to validate the measure in this population. While motivational interviewing has been studied with some promising findings in the EDs (Macdonald et al., 2012), future studies should examine how motivational interviewing or a harm reduction model (Westmoreland & Mehler, 2016) could be utilised more specifically based upon the perceived benefits of the ED, as well as in combination with therapies such as ACT that encourage psychological flexibility. While FBT for adolescents has been found to be most effective for outpatients with AN (J. D. Lock, 2019), it is warranted to further study how therapies such as EFFT could enhance its success by helping parents validate their child's experience, particularly with adolescents not yet ready to change.…”