The Travesty of Treatment of Chronic Anorexia in the EDIC

The EDIC, a term explained in the last post, often targets one type of person with an eating disorder—a patient with restrictive Anorexia Nervosa who is very underweight—for one specific reason: they are deemed untreatable by the medical system.

These patients are known to be more difficult to treat largely because we know very little about the underlying mechanism that allows people to survive on very little food and maintain very low weights. According to modern medicine, this illness should be biologically impossible, yet many people survive for a long time.

There is no known way to treat these patients in any setting, medical, psychiatric or residential. Many of these patients cycle in and out of programs and hospitals, are blamed for their illness and shamed for not getting better. All the medical and psychological effects of ineffective or even damaging treatments compound one another and create a burden of illness and blame which buries patients in an endless series of obstacles to recover, a blanket of hopelessness caused by the medical world’s ignorance.

The EDIC sees these patients as a consistent source of revenue. When trying to get help, many patients with Anorexia spend the majority of their time, sometimes up to 2-3 years, cycling in and out of residential and outpatient treatment. After discharge from a residential program, a few months of outpatient support leads to weight loss and a recommendation to return to residential. Insurance companies have to cover expenses for someone medically ill, and the EDIC can profit from a cohort of these “repeat customers.”

When I see these patients, they are all desperate to escape the cycle in and out of programs. Each reports the feeling of hopelessness, of feeling discarded by the programs as untreatable, of losing themselves and losing any grip on their lives.

The frequent traumatic experiences in treatment make them one and all want a way out of the cycle, even considering desperate measures such as convincing a surgeon to implant a tube in their stomach for formula feeding, anything to get away from the EDIC.

The flip side of the coin is that no better option for treatment exists in the outpatient world so patients are discharged and typically relapse. Providers are frightened by the potential medical acuity and professional liability of very underweight patients. The result is that an outpatient team jumps quickly to forcing that patient back into a program in the face of any adversity, even though any experienced clinician knows that the EDIC may stabilize things temporarily but never really helps.

This cycle is the impetus for me, with many other colleagues, to search for new ways to give hope to this group of people. Whether it’s ADHD/autism, trauma therapy, MCAS or a host of other possible ways to enable recovery, a provider who wants to treat these people has to be willing to give them a chance to make outpatient progress and swallow the fear of an underweight patient.

The eating disorder field needs to work to find another way to help this population. We don’t have answers yet, but condemning them to the EDIC cycle is willful ignorance causing enormous pain to patients and underserved profit to private equity. There are clues to more successful treatment than what the EDIC has to offer, but we as providers need to be brave enough to try them.