A New Approach to Caring for Adolescents with Eating Disorders
Sala experts partner with healthcare team to develop a clinical pathway providing comprehensive medical and psychosocial care
By the time she was admitted to Hassenfeld Children’s Hospital for her eating disorder in the fall of 2021, 14-year-old Beth (not her real name) was so depleted from extreme malnourishment that her parents sometimes felt like they could no longer recognize the enthusiastic, outgoing young woman who dreamed of being a singer and actor. Yet despite having almost no energy, Beth wouldn’t—couldn’t—stop exercising. She often worked out eight hours or more each day. Even after being hospitalized, if Beth was left unattended, she would hide herself under the covers of her bed to do leg lifts and crunches.
Doctors and mental health experts often say that eating disorders stem from a person’s desire to gain control over their circumstances. So perhaps it’s not surprising that over the past two years—when school closures and other extraordinary disruptions left so many young people feeling that their world was spinning into chaos—the number of adolescents admitted to hospitals with eating disorders, like Beth, has surged dramatically. Hospitals have never faced a crisis quite like this before—but thanks to the expertise of Sala Institute for Child and Family Centered Care, Hassenfeld Children’s Hospital is leading the way in showing how to get patients started on the road to recovery.
Responding to a crisis
Until recently, Hassenfeld Children’s Hospital didn’t have formal guidelines for treating patients admitted with eating disorders, both because the number of such patients was relatively small and because it was comparatively rare for those patients to be in such acute distress that the hospital’s staff needed a standardized approach for care.
“We were reinventing the wheel every time someone came in,” said Katherine Ort, MD, co-director of the KiDS of NYU Foundation Integrated Behavioral Health Program. “It wasn’t that we never saw patients with eating disorders; it was just that we were more likely to see them outside the hospital.”
But that all changed rapidly, beginning in 2021. Like other pediatric hospitals around the country, Hassenfeld Children’s Hospital has experienced a sharp rise in the number of children and young adults whose eating disorders have left them in need of hospitalization; consults related to eating disorders have more than doubled from 2020 to 2021.
While the pandemic is the most immediate cause, the sudden increase in hospitalizations reflects several underlying problems that have long been in place. Even before the pandemic, there was already a shortage of the kind of comprehensive outpatient programs that can prevent eating disorders from worsening. Now, with many of those programs limiting in-person treatments due to Covid-19 protocols, waiting lists for appointments can stretch as long as six months. Moreover, such programs often require ample insurance, and are out of reach for low-income families.
Multidisciplinary approach supports healing
Dr. Ort and Dr. Chanelle Coble, Interim Chief, Division of Adolescent Medicine, realized that, given the preexisting dynamics and the new conditions arising from the pandemic, Hassenfeld Children’s Hospital had to prepare for a wave of new cases. “Having a systematic approach to the care of patients with eating disorders is essential in keeping them medically safe and stable, as well as putting them firmly on the road to recovery,” said Dr. Coble. “We knew that in order to keep these patients safe and give them the medical and psychological care that they desperately need, an organized approach would be essential.”
The first thing that had to be done was drawing up a comprehensive, evidence-based set of guidelines to ensure that each and every patient admitted with severe malnutrition received appropriate medical and psychosocial care—not an easy task since, as Dr. Ort said, “NONE of us considered ourselves experts!”
“We had to learn as we went,” she said. “It’s really a testament to Sala’s multidisciplinary approach. There was incredible team support; it was hard and stressful, but we felt like we were in it together.”
Dr. Ort gives the most credit to Sala’s support staff and other hospital services who have day-to-day contact with the patients because the protocol is necessarily strict and requires constant, close observation. Patients are on bedrest for the first three days, and during that time are monitored one-to-one in their room, 24 hours each day; they’re not even allowed to go alone to the bathroom, out of concern they may induce vomiting.
Helping patients regain their health
The difficult job of monitoring patients and explaining the guidelines to them often falls to our support staff. Patient care technicians, for example, supervise meals, and have to respond when the patient is refusing to eat. Going into this effort, the patient care techs had no expertise in what to do in such a delicate situation. They needed an entirely new set of skills, under stressful conditions, and they learned it fast and well.
“It’s the nurses, social workers, nutritionists, patient care technicians, and others who are on the frontlines of the care coordination,” Dr. Ort said. “Many patients tell us that the degree of monitoring they receive makes them feel they’re finally getting the support they need, and that they feel protected from their eating disorder by the team in place around them.”
Beth is one of those patients. When she was admitted to Hassenfeld Children’s Hospital, her parents voiced a common fear: that they would never get their kid back. But as she started to get nourished and regain strength, she began showing the in-your-face attitude that she had always had.
“Her mom was like, “I know this is probably annoying for you, but this is my daughter!” said Dr. Ort. “I’m so happy that she’s coming back to herself.”
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