I got off the phone with a college student health doctor last week with the sinking feeling that I get when I have not been able to convey the rationale for what we do here at Kartini Clinic.
Let me give you some background: college-aged youth with an eating disorder who graduate from our Day Treatment Program and return to college face many hurdles to remaining in good remission. We long ago learned that we are not able to manage them from afar and therefore make every effort to help the family arrange college-based or local community care. In general, we have not found a team composed of a “therapist, nutritionist and doctor” to be very helpful when an eating disorder has been severe enough to have required an in-patient and/or DTU stay. But few colleges offer anything else. Further, our patients have come through a family-based program here that emphasizes parents do not cause and children do not choose to have an eating disorder, and that anorexia nervosa is a brain disorder. If their new therapist at college believes differently (say, that AN is caused by exposure to the media or by unresolved conflicts related to their family of origin, or fears of maturity, etc) this can be very disorienting.
So given these difficulties, we recommend that our college-aged students locate a psychiatrist or a psychiatric nurse practitioner (if they are on medication) and a therapist who is not specifically an eating disorder therapist but one with whom they can explore their existential and social concerns. A nutritionist at this stage of care is probably redundant since our patients have a food plan they leave with and adhere to, and since they are fully expert in nutrition/calories, etc. whether we like it or not. (Want to know how many calories or grams of fat there is in some food? Ask an eating disordered person. They hardly need any instruction on this subject). Then we request that they get weighed weekly in the college-based clinic, but that their weight not be shared with them (this is how we manage weight at the Kartini Clinic). These weights should be emailed or faxed to the youth’s parents to monitor, if at all possible.
Guidelines for weight monitoring (thoroughly discussed with the patient before they leave our DTU) read thusly: “lose 5 pounds, withdraw from school”. It has been our experience that regular meals, such as are on the meal plan developed specifically for them in the DTU, will allow them to maintain weight easily, provided they are not engaging in eating disordered behaviors (restricting, over-exercising, bingeing, purging). If their weight begins to slip, parents notify them and they themselves add some food to their plan (they have been trained by us how to do this).
The “5 pound rule” may sound extreme, but when we first instituted it, our college-aged patients confessed to us that they had all had a secret plan to lose weight once they were away at school (“just five…well, ok, ten……maybe fifteen pounds”). So we knew we were on to something. They were both annoyed and relieved to have these structured guidelines to use to “talk back” to their ED thoughts. And most importantly, such unambiguous guidelines prevent both potential return to inpatient care as well as arguments with parents about what constitutes “serious weight loss.”
So that is the background to our plan for patients returning to college. Off to college went one of our graduates, plan in hand, with the full support of her parents. A few days later I got an incensed call from the college health physician. She was outraged at the parents’ request that weight measurements be faxed to them divulging this information to their daughter.
“I always tell my eating disorder patients their weight!” She insisted.
I explained that not only was this indeed our request, but that it was also her patient’s request. The responsibility of managing her weight and the anxiety it engenders was being transferred from the patient to her new treatment team so that she, as a student, could focus on other things: making friends, studying, adjusting to dorm life and, well, having a life.
The doctor was unconvinced. “Ask her,” I urged the doctor, “Let her tell you what she wants.”
“I categorically refuse to tell her parents her weight.” She went on, “I find that if I give parents any information about their child’s health, it changes my relationship with my patient.”
“Even if that’s her request?” I asked.
“I don’t believe in involving parents. Our college students are adults. Involving parents changes my relationship with my patient” she repeated.
There was nothing I could say to get her to reconsider our request. The more we talked the more I marveled at her underlying assumption that parents were somehow the problem. I was amazed at the contention that whatever relationship the doctor felt she had with her patient was more important than making it possible for a young person with a severe, chronic mental illness to remain stable enough to attend college.
How many college-aged patients who have undergone significant treatment — in-patient, residential, day treatment or out-patient — need to relapse for us to address this problem in a new way?
Unfortunately, this attitude regarding parents pervades adolescent medicine. As if the primary relationship of importance to a patient should be the one with their doctor and not the one with their family of origin. As if any interest or involvement parents may exhibit in their chronically ill child’s medical condition was somehow inherently suspect.
It has been my experience that, far from wanting to “control their child”, parents are actually happy and relieved to have their young adult children assume as much responsibility for themselves as they can. By the time an 18 year old is ready to leave home, most parents are ready to help them do so. It is only with reluctance that parents agree to stay involved in their eating disordered child’s medical care, and only because they have already been through the hell of finding help for them in the first place and then being a part of demanding family-based care, sometimes for years.
It is the eating disorder we are trying to disenfranchise, not the person.
