When an eating disorder becomes a medical emergency

They’re tired all the time.

They fainted at school.

Their blood pressure, body temperature or heart rate are super low.

They’ve lost a lot of weight in a few months.

Their hair is falling out.

Symptoms like these might seem like no big deal, especially in a society where weight loss brings compliments.

But in young people, these could be the physical effects of eating disorders – the telltale signs of conditions they have hidden from their parents, friends, teachers, doctors and siblings until the toll on their bodies became too much to conceal.

Recent years have brought a sharp rise in the number of tweens, teens and young adults hospitalized for the serious medical effects of anorexia, bulimia, avoidant-restrictive food intake disorder, and other eating disorders.

Many of them only get diagnosed with an eating disorder once they’re in a hospital bed, getting care to stabilize their physical condition.

Suddenly, they and their parents must confront the reality that they have a potentially life-threatening condition that has hijacked both their brain and body.

But most hospitals don’t have in-house eating disorder specialists.

Free guides for hospitals and families

That’s why a University of Michigan Health team created free training and guidance to help any hospital adopt the approach used at the U-M C.S. Mott Children’s Hospital for patients up to age 24 who have been hospitalized for the medical impacts of an eating disorder.

The team has also published a free guide and video for parents and guardians of medically hospitalized ED patients.

The materials help them understand the importance of the care that their child or young adult will need to receive to recover.

They hope other hospitals can pattern their own patient education materials on these.

The guide addresses not just immediate care during a hospital stay, but also what comes after.

For most patients, that means family-based therapy, or FBT, done at home in partnership with trained eating disorder professionals.

FBT is the most evidence-based approach to recovering over the long term.

Jessica Pierce, M.D., M.Sc., has treated many of these patients.

She’s a child and adolescent psychiatrist at U-M who specializes in the care of patients hospitalized for medical reasons, including eating disorders.

She led the development of the materials to share with other hospital teams and families, and directs the Consultation-Liaison Psychiatry service at Mott, which provides mental health services to children and young adults hospitalized for medical reasons.

“Every hospital should be ready for these patients, because they have been showing up in ever-greater numbers since the COVID-19 pandemic,” said Pierce, who is a Clinical Assistant Professor in the U-M Department of Psychiatry.

“Even when they haven’t been formally diagnosed before they become medically unstable, often someone in the family has begun to suspect that something is wrong with their eating. We hope these guides will help hospital teams, and families, understand more of what to watch for and do during the initial refeeding process.”

Team-based care during hospitalization and beyond

Identifying an eating disorder as the root cause of a medical crisis can be tricky, because the disorder itself makes the person keep secrets about what they are doing and why.

“Sometimes they are so malnourished by the time they arrive, their brains’ executive functions aren’t working properly,” said Pierce.

“The initial psychoeducation for them and their families about how serious these disorders are, and how important it is to follow evidence-based treatment closely, is critical.”

Whether it’s restricting eating entirely, or avoiding all but a few “safe” foods, or eating but then making themselves vomit afterward, or compulsively exercising, or some combination of all of these, people with eating disorders find ways to hide their behaviors and the inner voice that’s telling them to lose weight at all costs or to perceive their body size and shape in a distorted way.

It takes a team-based approach to help stabilize patients suffering from severe physical effects of eating disorders, Pierce says.

Nurses, registered dietitians, hospital kitchen and dietary staff, hospital-based physicians, psychiatrists, psychologists, social workers, adolescent medicine specialists and primary care providers of all kinds can all play roles.

At Mott, the inpatient eating disorders team also includes attendants who stay in the hospital room with the patient at all times, so that they can’t sneak to the bathroom to vomit, jog in place to burn calories or try to throw food away without eating it.

Pierce notes that in some cases, hospital ethicists even become involved, when a patient’s eating disorder behaviors lead them to resist treatment forcefully, or when a patient’s cultural practices related to food must be taken into account.

The guide for hospitals also addresses what to do if a patient is over 18, when legal adulthood takes effect but patients may not be able to fully make treatment decisions because of their condition.

This can be especially tricky if a patient’s situation is severe enough to need long term residential treatment after the hospital has stabilized them medically, because adults must consent to such care.

Eating disorders aren’t like other conditions young people face

Terrill Bravender, M.D., M.P.H., who directs the Comprehensive Eating Disorders Program and is a Professor of Pediatrics and Psychiatry specializing in adolescent medicine, helped develop the protocol used at Mott.

“The protocol not only standardizes the medical management of malnutrition so that all patients receive the highest standard of clinical care, but it also serves to educate all providers, patients, and family members about many of the challenges inherent in treating eating disorders,” he said.

“A key challenge of treating eating disorders is that they are often “ego syntonic”, meaning that patients may feel that the eating disorder is part of who they are and may be almost proud of their high levels of self-control and self-denial. This is in contrast to most medical conditions which are ‘ego dystonic,’ that is, patient do not want to have their illness and so are united with the treatment team to seek ways of overcoming their particular condition.”

In other words, a young person in the hospital who has just been diagnosed with cancer, or a heart issue, or a kidney problem, or who has just suffered a burst appendix or a broken leg, can understand that they need to follow their care team’s advice for taking medicine, going to appointments or doing certain activities in order to have the best chance of getting better.

But a young person hospitalized with an eating disorder may actively fight against the idea that food is their medicine.

They might resist the prescription to eat meals and snacks on a regular schedule; to avoid drinking too much water to artificially increase their weight; to avoid exercising, vomiting and laxatives; and to get weighed regularly without being allowed to see their weight.

“One important way that we address this difference is to externalize the eating disorder. This means that we talk about how the eating disorder is not part of the patient; the eating disorder is the illness,” said Bravender.

“Patients often have what we may refer to as their ‘logical brain’ or their ‘wise mind’ that knows their eating disorder behaviors are unhealthy, yet are overwhelmed by the eating disorder that can drive them towards destructive behaviors. The inpatient protocol acknowledges this, and does not give the eating disorder a chance to negotiate regarding nutritional intake, activity levels, fluid intake, or medical monitoring,” he explained.

“Consistent messaging from staff is an important component of the protocol to address push-back from patients who may resist eating appropriate nutrition. And our protocol emphasizes the need for an entire treatment team even after they leave the hospital.”

Bravender and U-M colleagues were recently invited to write a chapter on eating disorders and their treatment for a major handbook for psychologists, published by the American Psychological Association.

They emphasize the importance of the family’s role at the heart of a team-based approach for eating disorder recovery in young people.

Educating more health care professionals, and more families, about best practices for eating disorder diagnosis and care across all settings is the only way to help more young people recover.

Additional authors: In addition to Pierce and Bravender, the inpatient care guide was written by Vishvanie Bernadene Stoody, M.D., M.S., Christina Cwynar, D.N.P., and Syma Khan, M.S.W., who were also involved in the family guide and video. In addition to Bravender, the APA book chapter’s co-authors are Natalie Prohaska, M.D., and Jessica Van Huysse, Ph.D.

Funding: Funding for the production of the inpatient eating disorders family guide and video was provided by a grant from the Michigan Medicine Friends, a nonprofit organization whose volunteers run four gift shops on the Ann Arbor medical campus and use the proceeds to award funds to teams for projects that benefit Michigan Medicine patients.

Paper cited: “Multidisciplinary Inpatient Care for Medically Compromised Youth and Young Adults With Eating Disorders,” Pychiatric Times. 

“Eating disorders in children and adolescents,” In P. E. Shah & M. H. Bornstein (Eds.) APA handbook of pediatric psychology, developmental-behavioral pediatrics, and developmental science: Pediatric psychology and developmental-behavioral pediatrics: Clinical applications of developmental science, American Psychological Association