Does Anything Justify Taking Away the Personal Rights of Someone with an Eating Disorder?

The history of the treatment of eating disorders mirrors old storylines in mental health about patients’, often women’s, rights. From hysteria to Borderline Personality Disorder and now eating disorders, psychiatry always seems to have a set of diagnoses that limit personal autonomy and personal rights for people who often appear to be legally competent.

Eating disorders are tricky though. People can get very sick from the symptoms. Medical follow up is often necessary and also generally misunderstood by the medical field. The compulsive thoughts about not eating or binging and vomiting food confuses most people including doctors. These thoughts sometimes lead to patients ending up in the legal system, getting a legal guardian and sometimes losing all personal rights, even though a conversation with this person seems as logical as with anyone else, unless the topic is food.

It’s one thing for a person with schizophrenia who loses touch with reality to need a legal guardian. Should a person with an eating disorder who is otherwise fully competent also lose their rights?

With guardianship in place, the current solution for these patients is either to go to inpatient treatment settings or see outpatient providers. These options all have limited success. Many patients prefer to stay outside the clinical system for fear of losing their rights or facing inadequate, possibly harmful, care.

My experience treating these people for several decades is that I have become increasingly frustrated with the rare circumstances when a clinician is willing to extend the kind of support that helps people get better. I believe that the extra steps—sending the message that someone actually cares—goes a long way towards the hope for a better day. This message makes a difference time and again, not for immediate recovery but for the hope that things can change.

What I also see is a field that tends to look down upon the extra steps a clinician can take, sees this approach as crossing boundaries and somehow even outside the bounds of acceptable practice. These reactions confuse me. Isn’t the goal to help people get well? In the case of people with eating disorders, the answer is yes but with a few caveats, the most important being yes but only on the recovery path prescribed by the established treatment protocols—the ones that very often don’t work.

When these treatments fail, the official conclusion is always that the patient just isn’t ready or doesn’t want to get better. Maybe the system is failing the patients rather than the other way around. In addition, taking away someone’s rights or autonomy does not match the message of do no harm. The answers to more effective treatment exist, but we as a field need to look outside the box to find them.

How a Clinician Can Have the Most Impact on Recovery

One effect of social media advertising and self-promotion for eating disorder practitioners and programs is the idealization of the process. Getting better from an eating disorder is not a panacea for all of life’s woes. It’s just a way to get better from an illness.

Part of the idealization is that programs feel the need to present novel concepts around recovery and act as if only they know how recovery works. The result is less of a need to find consensus in appropriate care and more of a drive to distinguish oneself from the crowd. That’s about self-promotion and not really about recovery.

Progress in treating challenging illnesses comes from a collaborative effort from all people trying to help these patients. No one person has all the answers. Only as a collective can we find more successful ways to help these people get well.

The goal of that effort must be rooted in a desire to help others. When the primary motive is financial gain or notoriety, the ultimate purpose of healing people with these illnesses is no longer paramount. It’s impossible to establish a proven system of treatment when maintaining a social media presence and writing a book and becoming a larger presence in the eating disorder space are the ultimate goals.

The process of recovery is long and arduous. There are always moments of doubt when it feels like the eating disorder behaviors are too strong or the meaning of life too weak to go forward. Often people have had too much hurt and disappointment to endure another similar experience. Or maybe they have no other outlet as meaningful or as important as the eating disorder.

Last week a colleague mentioned a recent small study that showed how having any practitioner be committed to a person’s recovery increases the chance of recovery immensely. This conclusion registered with me immediately. The commitment of one provider can be enough to determine if recovery is possible.

Above all, hope, care and dedication are the hallmarks of adequate support for someone in recovery. Those traits don’t guarantee success but are necessary for there to be a chance to get well.

It’s enough to understand how personal recovery is for each person and how having someone truly committed to team with the most hardened person trapped in an eating disorder can give them hope for the future. To me, there is no bigger takeaway in what makes recovery a real possibility.

How the GLP’s are an Obstacle for Eating Disorder Recovery

Eating disorder recovery changes with cultural tides, especially when thinness is idealized. The brief and trailblazing period of body positivity ended with the explosion of GLP’s on the market just a few years ago and led our collective desire back to the panacea of weight loss at all cost.

No class of medications has ever promised consistent, lasting weight loss before the GLP’s. Cultural norms and goals of thinness remain a fixation for much of the country. A medication that offers weight loss—no matter the health risks—proved too tempting for most of the body positive people in the media.

The result is acceptance of thinness and often extreme weight loss in many varied communities. Praise of severe changes in people’s bodies seems to bypass any health concerns. Rapid muscle loss? Eat more protein. Severe constipation? Take more laxatives. Hair loss? Take minoxidil. Fainting spells? Drink more water.

There is little talk about the real health risks and problems with rapid weight loss. All people, including doctors, appear to see is the supposed improved health by losing weight.

In my practice, I see the detrimental effects of the collective effect of GLP’s in the newer challenges for eating disorder recovery. It’s much harder to eat more and manage body image thoughts when so many people are restricting food and losing weight with a GLP-induced anorexic state. All the praise heaped on people losing weight flies in the face of the basic tenets of eating disorder recovery. Even more, people halfway or even early in recovery see these medications as a way to escape eating disorder thoughts (which are very different from the concept of food noise), manage hunger (often a frightening part of recovery) and keep weight in check.

The GLP’s sometimes offer what seems like a shortcut in recovery but in reality are just a new, troubling pitstop, or roadblock, on the road to getting well.

New hurdles for people with eating disorders crop up regularly, whether it’s a new medication, cultural norms around body shape or nonsensical dietary fads. The GLP’s provide what seems like a larger obstacle because of the ongoing impact these diets have on our understanding of thinness, weight loss and health.

People still get better in the age of Ozempic and Mounjaro. They still struggle to find value in aspects of their lives outside of food and weight. They search for meaning in who they are and how they live. They buck external trends that claim thinness is synonymous with achievement and virtue. The stronger the apotheosis of thinness, the harder the path to recovery. We are in one of these harder moments now.

Flexibility in Eating Disorder Treatment Planning

Too often, I see patients struggling for years with an eating disorder feel entirely misunderstood. The EDIC is so focused on meal planning, medical stability and weight that the underlying psychological and emotional suffering and extreme isolation are ignored.

Yes, medical stability and adequate nutrition are essential. The old adage of the field is that food and health need to stabilize first before any therapy can lead to gains in recovery. On the whole, I agree with that statement, but seasoned clinicians also know that treatment is never one size fits all. There is no one right way to treat people with eating disorders.

For many people—who are easy to find congregating on online communities trying to find a different way to get better—the standard protocol for treatment does not work. They are often more traumatized by rigid treatment rules or hardened by an inflexible system into an even stronger fixed belief system governed by the eating disorder.

For this not small cohort, there needs to be another way to recover. For some, they need support to build identity outside the eating disorder before they can even contemplate changing behaviors. Others need sustained trauma work to calm their nervous system in order to make changes in food possible. Yet another group might need a period of time to establish trust with a provider, often after a series of difficult clinical relationships, in advance of any talk about food stabilization.

None of these decisions obviate the need to work on changing eating patterns, but the plan for recovery needs to take into account all elements of a person’s physical, medical and psychological circumstances before developing the initial treatment.

In a common treatment plan currently, the EDIC urges clinicians to focus on admitting sick people to their programs, putting them through the treatment mill followed by discharge into their outpatient program. The independent outpatient team may be in limited contact, at most, with the patient during this period of time, but the therapeutic relationship becomes less central, often for months.

Discharge leads to a high chance of relapse for two reasons: the patient’s lack of experience eating outside a treatment setting and the prolonged separation of the patient from the outpatient team. Discharge planning tends to be haphazard and often last minute so there is little chance to prepare the patient for a smooth and successful transition. For this reason, the decision to refer to residential programs needs to made judiciously when more intensive intervention is necessary.

The treatment plan for a patient with an eating disorder must take into account all factors needed for recovery and not just follow a standard protocol. Any plan needs to factor in what each individual needs rather than follow a series of steps for all people with eating disorders. Although certain steps are necessary at some point, the path to recovery needs to be flexible.