The Current State of Treating Patients with Severe Anorexia Nervosa

The medical community still struggles enormously to know how to help patients with severe, life-threatening Anorexia Nervosa. Often, hospitals, even ones with experienced doctors, can medically stabilize at best. Residential treatment programs have no long lasting treatment approach to offer other than months of nutrition with the hope that the eating disorder thoughts abate. The field has studied medication after medication to no avail. Various outpatient programs find that harm reduction and long-term medical stabilization are most often the best outcome.

Ethically, the field is often torn between bad outcomes and worse ones. Patients often respond by living outside the medical system and trying their best on their own or with one provider compassionate enough to stand by them and accept the severity of their illness. 

Is a life of chronic illness often without much ability to have a satisfying, fulfilling life worthwhile? Should patients be found mentally incapable and given a legal guardian to force them into treatment even if they are otherwise totally lucid? Are these patients sometimes in a situation worth considering ending one’s own life as Dr. Jennifer Gaudiani wrote about publicly a few years ago? 

These questions represent only part of the ethical dilemma swirling around the treatment of these patients. 

Over the years, I have written multiple times in this blog about the mental health provider’s obligation to stand by these patients and support them them even in difficult situations. Too many of these patients end up abandoned by their providers—typically out of fear of the illness or liability or both. That’s not an acceptable option either. 

The hope is that the field will find new ways to successfully treat Anorexia. Every new drug or new therapeutic approach ends up being tested for Anorexia, thus far to no avail. 

I still believe these patents deserve support and deserve a voice. It can be very hard to do so when medical doctors don’t feel equipped to treat them, when family and practitioners often feel overwhelmed or afraid of their appearance and when treatment options are so limited for a dire, potentially life-ending illness. 

Medicine tends to approach these patients on a case by case basis without clear guidance on a treatment protocol. Even seasoned ethicists struggle to find the right path. Patients rights bump up against a severe and largely misunderstood illness. There are no right answers. 

Even though I come down on the side of patients rights, I’m aware that the choices are limited. The only answer is to find a path towards improved health, not even a cure at this point. It’s a painful and challenging reality for people with severe Anorexia. But that’s where the field is right now.

Managing the Vulnerability and Exposure in Early Stages of Eating Disorder Treatment

Although eating disorders themselves have fairly consistent symptoms, the driving force for eating disorders, and thus the path for recovery, can be quite different.

Eating disorder symptoms tend to be fairly clearcut. The majority include food restriction, binging, purging, over-exercise, chew-spit behaviors and unusual eating behaviors. Although this list is not comprehensive, the actual eating behaviors themselves are easy to pin down.

The first step in any treatment plan involves normalizing eating both discrete meals/snacks and the variety and balance of different types of food. This step is rarely easy, but the goals are clear.

The subsequent therapeutic goals aimed to help patients find new ways to cope with their thoughts, feelings and experiences can be much more varied.

Eating disorders can start from many initial factors such as trauma, anxiety, medical illness, dieting and the need for clear structure and emotional regulation, to name a few. Understanding the initial cause can be helpful, especially if that cause remains relevant in the present.

For other people, the cause of the eating disorder fades as other driving forces for the illness become more central. The list of possible forces are the same as the initial causes, but the need for the eating disorder for each patient can shift through the course of the illness.

Inevitably, any stabilization around food will crumble without sustained attention in therapy to find new ways to cope with what is uncovered by stable eating. People at this stage of recovery describe feeling very exposed, alone, and vulnerable to the world and unable to cope with how they feel inside. Taking away the eating disorder symptoms feels like exposing all their inner turmoil without any new way of coping. That experience is often so painful that people see no other recourse than relapse.

Therapists can use various skills such as calming techniques like breathing, muscle relaxation or somatic tools. They can work with psychological methods to process, identify and experience emotions in new ways. They can also use trauma therapies to start to more fully integrate trauma memories. There are many other ways to help people through this challenging part of recovery.

The goal of therapy at this point is to acknowledge how hard this step is while also maintaining hope that the turmoil will pass. It does pass for people who find a way forward. The first months when food is more regulated is typically the hardest part of recovery. It’s worth the effort and energy to move forward to get to the other side.

Why Doctors and Psychiatrists are Reluctant to Treat People with Eating Disorders

I have a strange experience any time I tell another doctor, especially another psychiatrist, that I specialize in seeing people with eating disorders. The reaction is typically surprise, incredulity and admiration. On the whole, doctors across the board are shocked to know a colleague would choose to build a practice seeing primarily these patients.

My first thought about this reality is that no wonder patients with eating disorders struggle to find adequate, compassionate care. Doctors don’t appear to want to treat this group of patients.

My second thought is what are these colleagues trying to say through their reactions.

I believe there are several aspects of treating patients with eating disorders that scare off many doctors.

First, this cohort of patients is often medically sick, sometimes very ill. When the symptoms of the disorder itself are often intractable, seeing people with eating disorders means ongoing care for people who are chronically medically ill. Even with adequate medical care, which is very hard to find since primary care doctors often reject these patients, psychiatrists are held somewhat responsible for the concomitant medical and psychiatric effects of these illnesses. Recovery is long and slow so psychiatrists end up overseeing a medically ill patient for years. That’s an unusual burden for a psychiatrist.

Second, the family dynamic around these patients is typically complicated. As many books have discussed, patients with eating disorders tend to come from families with challenging emotional structures, poor communication and little room for the patient to express thoughts and feelings. The way they are heard and seen is most often through the eating disorder—a reason why recovery often seems so out of reach. Psychiatrists are then challenged to work on the emotional struggle and dysregulation with a patient reluctant to improve eating and their overall health, specifically due to that family dynamic. Very often this situation applies to adult children in their 20’s and 30’s and even older. The potential consequences are serious.

Last, the families and patients are also typically desperate for the person to just get better. Since eating seems like the most basic human task, it’s hard to explain what makes recovery so hard. Failure is often not tolerated, and psychiatrists can get caught up in the whirlwind of desperation even when the course of recovery is laid out clearly. The emotional needs of the family don’t match the data that getting better is no guarantee, and that situation makes it easy to include the doctor as part of the failure.

These mainstay issues in treating people with eating disorders lands a lot of blame and responsibility, often erroneously or at least in an exaggerated way, on the doctor. These are hard to treat illnesses. People can get better, but recovery is often long and hard. Some people don’t get well. Circumstances around treatment make this population challenging, often more challenging than many doctors and psychiatrists are willing to take on.

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.