Chronic Anorexia Vs. Terminal Anorexia

The recent article about Anorexia Nervosa in the New York Times informed its readers about the severe medical consequences of this illness. In fact, the article made the case that some people with Anorexia might do best with palliative care, perhaps even assisted suicide.

For a clinician who treats people with eating disorders, the article did not talk about anything new in the field but focused largely on the most extreme cases.

The two doctors the article highlighted work on the medical floor which treats the most acutely sick patients in the country, aptly names ACUTE. Doctors know to send the patients in need of highly skilled medical care for eating disorders to this ward. I have worked with them many times, and they are uniquely able to shepherd these patients to a medically stable place for residential treatment.

Accordingly, these doctors also see a larger percentage of the sickest patients, including some who are so chronically ill that they may either need care to help manage severe intractable symptoms and may not survive their hospitalization.

Clinicians in private practice also see patients this sick who may refuse to go to ACUTE or be ineligible due to insurance issues. Some of these patients also won’t survive their eating disorder.

Calling the illness these most severe patients have terminal Anorexia as opposed to chronic Anorexia is dangerous. Since the ACUTE doctors don’t follow the most ill patients with Anorexia long term, only during their weeks long hospitalization, they may not have appropriate perspective to coin a new diagnosis.

Some patients with chronic Anorexia do need management of their medical symptoms, without hope of recovery, and some are not able to survive. However, a number of patients I have seen who would have qualified for this new term not only survived but fully recovered, and a few of them went to ACUTE as well.

I’ll link an old post from this blog about Chronic Anorexia as a counterpoint to the article.

An article read by many people about the severity of Anorexia is useful for general knowledge and understanding about this illness. However, using the platform to expound on a new diagnosis without consulting doctors in the field is risky.

Any new direction in diagnosis and treatment needs to rely on a consensus of clinicians, not the opinions of a couple of knowledgeable doctors with a narrow lens on the field.

Standardizing Training for Eating Disorder Treatment

Training for clinicians to treat people with eating disorders is limited, unregulated and often unsupervised. The result is very uneven clinical care and often treatment that can be as harmful as it is beneficial.

Eating disorders are different from all other psychiatric disorders largely because there are frequent and severe medical consequences.

Psychiatrists typically avoid treating these patients and often take a very limited role in care if they do.

Even more problematically, medical doctors in other specialties who track the progress of these patients are also often limited in their knowledge of the complications of eating disorders. Medically, eating disorder patients have very different issues and need care from doctors who understand these illnesses, but those doctors are hard to find.

Due to the limited medical care, other clinicians worry about seeing eating disorder patients, especially the ones who are more ill. In addition, there is no standard training program to help clinicians learn how to treat people with eating disorders.

The result is that finding the right treatment for an eating disorder can be difficult. Some programs—non-profit organizations or residential programs—offer more training than there used to be. Many clinicians learn some strategies and approaches by working for various programs as well.

However, there is no standard method or text to instruct clinicians of all types how to treat these patients. And patients suffer because of it.

Despite the rise in prevalence of these illnesses, the increase in treatment has been driven by financial gains, namely venture capital firms buying and expanding treatment programs. The question is who might standardize treatment for the clinical community so there is a way to determine providers with adequate care for these serious illnesses.

As much as this step is needed, it remains difficult to see how and where the next progress can begin.

The Role of Regular Weighing in Eating Disorder Treatment

A standard focus of treatment since the beginning of the eating disorder field is weight. It’s easy to see why weight feels imperative to recovery and health, but the pitfalls of prioritizing weight are equally disruptive, if not counterproductive.

Almost any time someone starts eating disorder treatment, weight is one of the first things to be discussed and monitored. Typically, a dietitian or primary care doctor will weigh the person once weekly, thus establishing a precedent that weight is indeed a—if not the—most important data point in recovery.

People with eating disorders almost always are very focused on weight. The driving force for the disorder itself is most frequently about lowering or maintaining the number on the scale. By charting weight from the start, the treatment team sends a clear message: weight is the most important factor on treatment.

Unintentionally, the eating disorder thoughts feel vindicated! Someone with an eating disorder can’t easily tell themselves that weight is not important. Look at what the team is making a top priority. Rather than start the process of treatment towards health and meaningful parts of life, instead weight is still paramount.

How much eating disorder clinicians have gone in the wrong direction.

In the best case scenario, people in recovery don’t know their weight for years. Over time, they have less and less association with their weight. So when they finally know their weight again, years after they have been doing well, the number does not have much meaning anymore. This does happen often because it’s very hard to measure weight weekly and still tell the person weight does not matter. So the ideal way to manage this data point over time is a very unlikely scenario using the current treatment model.

A newer method of managing weight is to make the number on the scale an open part of treatment from the start. Patients will know their weight through the entire process of recovery. The goal is immediate exposure to the number, thereby placing weight as an equal measure of recovery along with meal plans, overall health and thoughts and feelings about recovery and life. At least this plan doesn’t make weight a magical number hidden from the patient.

A final idea is to measure weight much less frequently. Since insurance providers prioritize weight as a means to justify treatment, weighing people less is difficult. But treatment needs to consider how weight can derail care by reinforcing how important and powerful the number on the scale really is. Either making open weights part of recovery or weighing people less often are worthwhile directions in treatment to consider.

Respect and Autonomy Help Avoid Treatment Trauma

The evolution of eating disorder treatment began with adolescent girls with Anorexia Nervosa starting in the 70’s through the early 80’s. The field was new and the symptoms and course of illness confusing. Clinicians were not sure how to approach children in severe medical and psychiatric distress because they were unable to eat. However, the initial population needed to be treated as children because they were for the most part young, very ill and severely impaired by starvation.

Treatment programs in hospitals and later residential programs designed clinical approaches with this population in mind. Systems included a reward/punishment model based on good behavior, chaperoned bathroom visits and passes for any trips outside the program’s designated space.

It was possible to justify these guidelines because the majority of patients were young, but the larger problem is that programs have not substantially changed their thought process despite the much broader set of patients now seeking care. The varied eating disorders encompass many more types of symptoms, and the patient population spans a much larger age range.

At this point, patients often avoid treatment programs because they know the approach is not meant for people like them.

Infantilizing patients sends many troubling messages. Patients feel responsible for and ashamed of their illness. It’s impossible to equate eating disorders with other illnesses using this treatment approach. And people struggle to trust clinicians who blame everything on the eating disorder and don’t respect or value the people themselves who are struggling.

Eating disorder recovery needs to be a collaborative process. Certainly, patients need to learn about their disorder, how the thoughts and symptoms work in tandem and why the symptoms are so hard to overcome. At the same time, clinicians and programs need to respect the autonomy and maturity of their patients. People with eating disorders are real valuable people who need to hear that message from any program from the very start of treatment.

The double-barreled destructiveness of a program treating people like children and not showing respect is hard to overcome. The message is to not trust themselves or clinicians. How can this message lead to recovery and health?

Any program must pay attention both to the immediate welfare of anybody entering their program and chart a reasonable course towards true recovery. Treating people like children who can’t be trusted frankly does the opposite and potentially opens the door to traumatic experiences which only makes the eating disorder more entrenched. Trust, respect and autonomy are the bedrock of starting any eating disorder treatment in any setting.