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.

The Eating Disorder Industrial Complex (EDIC)

There is only one way to receive any treatment for an eating disorder. Once a patient sees a new provider, they enter a strict, rigid system that provides only one avenue for care. Stick with outpatient help and get better or get thrown into the finance-driven world of one size fits all outpatient or residential programs. All providers now work around this system and assume the industry can back up any clinician by giving supposedly adequate care and saving any clinician stuck with a difficult case.

The once overlooked eating disorder field is now a boon for the finance world, what I call the Eating Disorder Industrial Complex (EDIC).

The introduction of private equity into the marketplace led to an explosion of residential and outpatient treatment centers aimed at exploiting the insurance market for profit. Programs did not further or improve treatment at all but instead doubled down on existing, largely ineffective models. By expanding access across the country, the EDIC made treatment more palatable to providers who now can opt out when the going gets too tough by saying go to a program or treatment ends.

Although widespread availability of treatment is the new norm, the EDIC provides cookie cutter care by a largely inexperienced staff. It’s no surprise that the EDIC is failing a large percentage of patients.

The current protocol is a combination of one meal plan fits all, standardized residential care and generic therapy often run by a rotating group of new clinicians. There is no real evidence this treatment plan works, and many patients end up in a revolving door of various programs until either insurance won’t pay or they give up.

Programs ignore new information about coexisting ADHD, autism or MCAS with eating disorders. Where are the programs with a different learning style for people with ADHD or that are less chaotic for people with autism? Why aren’t programs considering and treating other medical issues that make recovery harder like MCAS?

Since there is no accredited degree or certificate to treat people with eating disorders, clinicians have to learn on their own and do so in the shadow of treatment programs. When patients aren’t doing well, providers can decide not to see someone and insist they go to a “higher level of care.” The EDIC allows independent therapists and doctors to sign off on a patient who gets too sick and trust the programs will make things better. Even clinicians in private practice have no incentive to try to improve care since they can rely on the EDIC to bail them out.

What happens to the patients who cycle through programs for one, two or three years? They desperately want to get back to their lives. For some that means stopping all treatment since all roads lead to residential care. Others beg surgeons for feeding tubes in their stomach to have enough nutrition to stay out of treatment. Many just give up and turn to social media for solace and new ideas about how to get well.

Medicine and the psychology world have abandoned a desire to meaningfully help eating disorder patients to the EDIC. Financial gain has become the driving force for eating disorder care, not improved treatment and outcomes.

It’s due to this sad and frustrating situation that I and other likeminded providers are looking for answers. Part of this new line of treatment involves taking social media concepts seriously and creating outpatient teams which can treat the concurrent illnesses and psychiatric disorders that complicate eating disorder recovery.

Just as important, patients need people to believe in them. The traumatic experiences of a revolving door of treatment combined with a series of providers who give up on them, blame them for their disorder and condemn them to a life of chronic illness causes an enormous amount of pain, trauma and hopelessness. Therapy for these people is as much about undoing the trauma of endless treatment as it is about recovery.

Just the act of having a provider believe in true recovery, that people with eating disorders can get well and that there is a chance to live a full life goes a long way towards helping people truly get better. That sense of humanity and lack of judgment is sorely missing in the EDIC.

Reassessing eating disorder treatment needs to start from the ground up. Focusing on people and their healing has to be paramount, not financial gain and capitalism.

A Reminder that Eating Disorders can be a Very Serious Medical Risk

The general population knows more about eating disorders now than ever before. These illnesses can be found in modern culture through all sorts of media: television, social media, podcasts etc. As a result, the stigma around eating disorders has decreased. More people and families speak up about their struggles. The overwhelming secrecy and shame are no longer as all consuming.

Anorexia, Bulimia, binge eating and ARFID are in our daily vocabulary. The basic understanding of what these terms mean is within the grasp of a much larger swath of the population.

I can see the effects in many significant ways: people seek help earlier in the course of the illness, families are more open to learning and support, patients know so much more from the start and can dive into recovery.

Even so, these diseases are still conflated with vanity, the desire to lose weight, be as thin as possible or control one’s body due to our thinness-obsessed culture. From a more in depth point of view, more people see eating disorders as a way of coping with the emotional challenges of daily life and as a means to find accomplishment or satisfaction in the behaviors and results of the illness.

However beneficial this information is for awareness and acceptance of eating disorders, one critical complication is often overlooked: the serious medical complications.

The severity of eating disorders may not be as evident to a lot of people, but anorexia is the psychiatric illness with the highest mortality rate (along with schizophrenia). Education about eating disorders has to include a basic understanding of the severe medical and health risks too.

Although classified as psychiatric disorders, eating disorders are also medical diseases, sometimes very serious and even terminal. Anorexia can lead to damage to the cardiovascular system, organ failure, fluid retention around organs and paralysis of the gastrointestinal system. Bulimia may cause abrupt changes in electrolytes that can result in heart arrhythmias. Binging sometimes leads to a complete halt in the gastrointestinal system.

Eating disorders need medical attention, especially when the symptoms are most severe, in order to facilitate the beginning stages of recovery.

This post is not meant to be a warning but more a reminder of the medical concerns underlying eating disorders. Medical stabilization has to be a first priority before any and all steps in treatment. Let’s not forget that people can get very medically ill from these illnesses. Health has to be the first step before anything else.