If your chi ld had a severe medical condition requiring specialized surgery or treatment and the answer to “where should my child be treated?” was the Mayo Clinic, likely you would be off to the Mayo Clinic if you had to hold a church bake sale to do it. But when it comes to asking where children with severe anorexia nervosa (with a mortality of 10%) should be treated, people begin to ask: “why can’t my family doctor do it?” “do I really have to leave town?”
I can’t tell you whether or not you will have to leave town to have your child treated, and there is certainly more than one reasonable place to get eating disorder help, but there are some essential components to adequate eating disorder treatment that you should consider, wherever you go. If the facility you are contemplating does not have these elementary components, my advice would be to go elsewhere to get eating disorder treatment.
The following is an excerpt from my book Give Food A Chance, Chapter 13, ‘My Child has to go to the Hospital?’
A perfect eating-disorder inpatient unit would have dedicated beds, locked bathrooms, 24-hour psychiatric and medical nursing, and be physically contiguous with the DTU and other stepdown programs as well as the outpatient clinic. There would be a large Ronald McDonald House nearby as well as cheap, safe housing for the parents of young adults; there would be a dedicated school, and more. Even the best children’s hospitals do not meet all these ideals. Which are essential?
When I first began hospitalizing children with AN in our community Children’s Hospital, I experienced all the difficulties inherent in working with a generalist nursing staff who, although very competent, did not understand our type of patient. Additionally, the response to our patients from most other doctors on the ward ranged from puzzled to hostile. The treatment of the patients, when my back was turned, was punitive and often judgmental. The rules were harsh because we felt we could not explain treatment goals adequately to all shifts of all providers. I felt myself too busy to take the time to train the nurses in the care of eating-disordered patients. Boy, was I wrong! It wasn’t until I resigned myself to using my day off to do in-services for the nurses that things got better for us all. Immediately. Every hour I spent in those in-services paid off in years of cooperation, insight, and great nursing care on the part of the pediatric nurses. Once they understood the nature of the illness and the special requirements for their care, they became the children’s best allies and advocates. Although the eating disorder service remains very structured, it became unnecessary to have punitive rules to make the patients cooperate. As soon as hospital staff understood the necessity for it, the hospital placed locks on all the bathroom doors to prevent purging or, much more commonly, exercising.
A few years ago our Children’s Hospital instituted Nurse Case Managers for several services, including ours. At first we were not sure we wanted to be “managed,” but it turned out to be wonderful. Nurse managers do the day-to-day communication with the insurance companies and are on the floor to field questions and help families when the doctors are in their offices. Additionally they can help families arrange lodging at the Ronald McDonald House when appropriate. All of our patients have their own room and bathroom (which is locked), most of them are on telemetry (continuous wireless cardiac monitoring), all meals are supervised by a nurse. Once patients are on Phase III (see below), they eat with the other eating-disorder patients in the common room, but always under supervision of a nurse.
And a word about the Ronald McDonald Houses attached to many children’s hospitals: never was a charity of more service to families with chronically ill children than the RMcD Houses! The fact that families can afford to stay near their ill child in cleanliness, comfort and psychological support is near miraculous. I would urge all people concerned with the care of children to support their local Ronald Mc Donald House. It is a gift to families. Just ask those families.
Summary of essential components to an inpatient
service
1. Children’s hospital or dedicated children’s ward within
the hospital
2. Physician advocacy and 24/7 medical coverage
3. Pediatric nursing care and ancillary services
4. Case management with the insurance company
5. Control over the food offered by the hospital kitchen
6. Ability to monitor strict I&O’s (intake and output)
7. Locked bathroom doors
8. Peaceful, friendly, no-negotiation atmosphere
9. Telemetry
10. Access to timely pediatric psychiatric evaluation/consultation
11. Phased activity protocols
12. Ronald McDonald or other housing for families
13. In-house school or tutoring
