Last fall, I blogged about palliative care for anorexia nervosa (AN). In light of a recently published article on the topic, and considering how riled up I have become as a result, I believe this subject deserves another post.
An article by Lopez, Yager, and Feinstein entitled Medical Futility and Psychiatry: Palliative Care and Hospice Care as a Last Resort in the Treatment of Refractory Anorexia Nervosa was published in this month’s issue of the International Journal of Eating Disorders. The authors describe a 30-year-old female with an 11-year history of AN who presented in their clinic at an extremely low weight with numerous medical complications. Over the course of her chronic illness, this woman had been through two stints in residential treatment, multiple hospitalizations, and several years of participation in a day treatment program. At the time of intake, she continued to engage in caloric restriction (consuming fewer than 300 calories per day) and exercise compulsions (running 2 hours daily).
The treatment team recommended residential treatment, but the patient was unwilling to go voluntarily and the treatment centers were unwilling to accept her involuntarily. The team concluded that “no viable treatment options existed” and consulted the medical center’s ethics committee.
The patient’s family refused guardianship. When the idea of pursuing court-ordered guardianship was presented, the hospital attorneys rejected it on the grounds that the patient would most likely not meet criteria. In the end, “the treatment team and ethics committee determined that her physical and psychiatric impairments were likely to lead to her death, despite any plausible attempts at aggressive intervention” (p. 373).
A palliative care approach was pursued for this patient, despite her firm belief that she was not going to die. So she continued her extreme caloric restriction, purging, laxative abuse, and compulsive exercise. She sustained numerous stress fractures, abrasions, and bruises from falls while running. Her weight, blood pressure, and heart rate dropped even lower. During this time, she attended regular outpatient therapy sessions, during which her eating disorder was never discussed. She eventually became so weak that she was moved to an inpatient hospice, where she died three weeks later.
What is wrong with this picture? The premature death of a young person is always a heartbreaking tragedy. But when a young person dies from a treatable illness, it is even worse. This patient’s family and treatment team abandoned her in her most desperate time of need. The ethics board washed their hands of her; law did not protect her.
Imagine, now, that this patient suffered from severe mental retardation (MR) instead of AN. A patient with MR would not be permitted to engage in self-injurious behaviors. If she could not eat on her own, her family or her nurse or her homecare worker would prepare her meals and spoon feed her. If she engaged in repetitive physical activities that posed a danger to her health, as many intellectually challenged persons do, she would be restrained for her own safety. If her family were unable or unwilling to provide her with the care she needed, she would be placed in a residential treatment center or a group home or an assisted living facility of some type. The cost of these services, even in the United States, would be subsidized by the government. Allowing a person with MR to starve to death would be considered cruel and inhumane. But for a person with AN, it is OK?
The irony here is overwhelming. Both AN and MR are biologically-based brain disorders which result in an inability to meet one’s basic physical needs. MR is, by definition, a life-long, incurable condition which causes marked impairment in functioning. AN is treatable, and many people recover from it completely. Unlike most people with MR, people with AN are able to form intimate relationships, pursue higher education, have meaningful careers, function independently, and make enormous contributions to society.
We, as a society, have done a great service to those with MR. We have medical ethics, legal guidelines, and government programs to protect them and ensure that their needs are met. They are not offered palliative care. Regardless of their family circumstances and finances, they are offered tremendous support for as long as they need it, which is usually for their entire lives. But with AN, the treatment ends when the insurance runs out. Or when the parents and treatment team are fed up. Or when a judge decides that further treatment isn’t worth it.
For the record, this is not about people with AN being “more worthwhile” than people with MR and therefore “more deserving” of resources. Quite the contrary. I believe that all human beings, regardless of physical or mental illness, disability, race, gender, religion, or sexual orientation, deserve affordable, effective healthcare services throughout their lifespan.
Why is it that we have failed people with chronic AN but served people with MR so well? Because most people in society, and many in my own profession, believe that AN is a choice. No one, not even children, believes that people choose to have MR. Because many treatment professionals believe that AN patients must be motivated to recover, enter treatment willingly, and manage their symptoms on their own. No one waits around for people with MR to become motivated to recover before providing them with services, and no one expects them to manage their issues alone. Because our legal system believes that an adult with a BMI of 10 who runs 15 miles a day and cannot nourish herself is competent to make her own healthcare decisions.
Come on, world. We can do so much better than this.