I’m sure all specialties have their frustrations, but here is a major one of mine: patients who come to Kartini Clinic needing -- indeed deserving -- help but at the “eleventh hour.”
What do I mean by this? I mean families who come in seeking help for a condition which is characterized by anosognosia, having waited for a variety of reasons, until shortly before their child’s 18th birthday, at which age their child will be able to refuse treatment, and often will do. Even in states where medical guardianship is possible, it’s expensive, wrenching and takes time. When a child with an eating disorder reaches their 18th birthday and is legally an “adult”, the clock has struck twelve and the armamentarium of the pediatric eating disorder doctor turns to dust.
Why do parents wait so long? There are many reasons, of course, but to mention a few:
- poor insurance coverage for “mental health” issues
- unwillingness to challenge their nearly grown-up child, whom they invariably adore
- reluctance to interfere with school or vacation plans
- parents, themselves often struggling with eating issues, being reluctant to call a halt to behaviors that may, on some level, “make sense” to them.
Ok, so that’s the parents’ part. And perhaps we can all sympathize with these reasons. After all, there but for the grace of God go many of us.
But that’s not what makes me crazy, what breaks my heart.
What truly breaks my heart is this: parents who relied on the advice of their doctor, nurse practitioner, therapist or nutritionist to keep their child safe, and who are kept in a limbo of slow/no progress and weight stagnation or loss, until the parents finally realize that what they were doing was going nowhere... and suddenly their child was nearly 18. Pity those families. I certainly do. But my overwhelming emotion is rage against those who allow a child to remain ill, to continue to lose weight or linger for months, even years, in partial recovery, because if they referred them out they might lose a patient.
Providers: no matter who you are, swallow your pride and recognize when you have failed to achieve progress and get these kids a higher level of care… and well before they are 17! A child’s life which is at stake. Think about how you would act if it were your child's life at stake and act accordingly!
A few weeks ago I was asked to do a consultation for a family whose child was closing in on her 18th birthday. She had had an eating disorder for years. She had seen therapists, doctors, nutritionists. all to no avail. And yet those providers hung on to her despite lack of progress, claiming that they had a “good therapeutic relationship” with her which they did not want to break with demands that she make objective gains. She would progress, they thought ,“when she was ready.”
Do I need to tell you that this mother and father loved and trusted their daughter, who -- by the way -- also told me how close she was to them? “I’m too fat,” she told me during the interview. “All I do is binge and purge now and I must lose weight. I will agree to go into treatment when I weigh 80 pounds and not one pound more. At 80 pounds I will deserve treatment.”
Do I need to tell you that the parents wept when I told them we could not take a child of her age -- and would need legal guardianship because she refused to cooperate with treatment -- into our intensive outpatient program for college aged-youth? Since we could not help them directly I gave them the name of several adult residential facilities. Unfortunately these facilities all replied that guardianship in Oregon could not be honored in their state; if an adult at their facility refused treatment, they could just walk out the door. Further, as her weight was no longer as low as it once was, insurance would likely not agree to pay for residential treatment “just” for bingeing and purging. The mother was enraged that their daughter’s therapist had wasted so much of their time and still did not believe that families should be involved in their own child’s care. They were angry that they had been kept in a useless treatment system, angry that their doctor had not pulled the plug, angry that they had listened to such providers… angry and broken hearted.
This girl’s mother agreed to let me tell you a bit about their journey, in the hopes that out there in cyberspace someone is listening who will be insistently proactive about getting help for their own child.
Bettina (not her real name) had seen a well-known, local pediatrician for some time. When she was 15 or 16 this pediatrician and her parents became concerned that Bettina had an eating disorder. This pediatrician insisted that the family take Bettina to see a therapist whom she knew and trusted, a “psychodynamic psychotherapist” who was “the best” and an “eating disorder specialist”. This they did. For quite some time.
Having no experience with treatment or with eating disorders, Bettina’s parents could not hear the clock ticking.
The parents were told in no uncertain terms to leave Bettina’s eating issues to her and to her therapist. They were told never to use behavioral incentives or disincentives (e.g. taking away her phone for non-compliance with eating) and to take no action whatever without the approval of a family therapist, who had been pulled into the treatment team as well. They were counseled to have patience, the therapist told them that it would “take time in our treatment and [then] continued therapy when she goes to college to turn around.”
Desperate because of lack of progress and now (correctly) believing themselves to be running out of time as she had turned 17, Bettina’s parents began searching the web. “We should have done that from the start,” her father told me. And they found Maudsley.
They were excited and hopeful. They took what they had found to Bettina’s therapist, “the expert”, and asked for her help instituting at-home re-feeding. The therapist’s reply was that she would not be involved in this treatment, of which she disapproved, adding “given her age and circumstances I don’t believe it’s the best approach for her treatment... I feel taking the lead as her parents in the eating portion (which is what Maudsley asks of parents) goes counter to her individuation (autonomy building) phase she is currently in.” The therapist was firm; she asked them to make a choice between continuing with her or finding someone else as “ I don’t feel comfortable continuing building that trust with her if Maudsley is the chosen approach by the family. Please advise as soon as possible on your decision.”
Bettina was then referred to a PhD psychologist who had her look at pictures of food to determine whether or not she found them aversive. The parents mentioned to the psychologist that they had found a place called Kartini Clinic on the Web but reported that he ridiculed our evidence-based, family centered approach, recommending rather the local DBT program if Bettina did not feel she could “relate to him.”
The clock continued to tick.
She was in the DBT program for many months and while the family felt it was helpful with some of her behavioral dysfunction, it didn’t seem to address the eating disorder. That was “intentional” they were told, since first the underlying issues and behaviors would need to be addressed and then the eating issues could be.
Ten days before she turned 18 they brought her to us.