When the NYTimes prints a story, it tends to generate conversation, whether we live in New York, Florida, Texas, Utah or Oregon; such is its influence and reach.
On March 14 the NYTimes published an article on what it termed “growing concerns” about residential treatment centers; this article joined at least two others on the subject of eating disorder treatment by the same journalist (here and here). The March 14 article reports on the “rapid” growth of new, competing centers across the country, such as Monte Nido and the Eating Recovery Center, both staffed with reputable clinicians, but backed by big investment money. Big investment money always makes people suspicious.
But should it?
Just to clarify, for those who are not familiar with our program: Kartini Clinic has been in Portland since 1998 and it remains our only treatment center. Our program does not include residential treatment. We have never received outside investments. We have worked with and on occasion referred patients to Monte Nido, Eating Recovery Center and others. On occasion we receive referrals from residential treatment centers. Like most programs, Kartini Clinic accepts many forms of private insurance; however, unlike many programs, we also work with state-based Medicaid plans. Our treatment philosophy was family based long before it was fashionable to do so. And we only treat children, to age 18.
Several things struck me about the NYTimes article:
There was no discussion of children. In the past, AN has been looked at as a condition of young adults, with “early onset” being considered 16 and 17 years of age. That has changed with improving early recognition of this illness by pediatricians and parents, thanks in part to vocal parent advocacy groups such as FEAST. We now recognize that eating disorders can present in childhood and at Kartini we have had patients with anorexia nervosa (AN) as young as six. It has been my personal experience that, when asked in a sympathetic and neutral way, teens with AN will tell you that their eating disorder thoughts and cognitions preceded their actions (such as restricting their food intake) by years, and it is not uncommon for them to reference their grade school years. It’s like a pot that slowly comes to a boil, which no one notices until it is boiling over.
Acknowledging the fact that children get anorexia nervosa and its variants (some kinds of ARFID, avoidant restrictive food intake disorder) should profoundly change the calculus of choosing an appropriate treatment modality. A decision about residential treatment, such as is discussed in the article, is more fraught. In our professional opinion, whenever humanly possible, children should not be separated from their parents.
Parents do not cause eating disorders and children do not choose to have them. Not only has this been Kartini Clinic’s motto since we began treatment in 1998, it’s a scientific fact and one that is now — finally — widely accepted. Given this fact, family involvement in treatment for children should be included at all levels.
If you see enough children with eating disorders you will learn that, like it or not, not all children will benefit from any single approach. Home re-feeding, done by the parents, with guidance from a therapist is almost always a great starting point. Almost always, but not always. Home re-feeding has certainly proven more effective in achieving weight restoration in children and teens than the old cocktail of therapist, nutritionist and monthly visits to the doctor. But there are children who are too medically compromised for this approach (severely low heart rate, dehydrated, unstable vitals, unstable electrolytes, more than 30% of their body weight lost to semi-starvation, co-occurring psychiatric diagnoses making cooperation impossible, to name a few). When this is the case, no parent should be made to feel a failure for their child needing a higher level of care. But should it be residential? We don’t think so.
Home re-feeding also relies on at least one parent being able to take time off of work in order to re-feed during the day and supervise at night. It requires that such a parent not be actively eating disordered themselves (not a trivial consideration for a highly heritable condition – meaning it runs in families – like anorexia nervosa), that they not be too ill with their own medical conditions, and that there be enough food in the home, etc. But no matter at which higher level of care treatment is initiated – hospital, residential treatment facility, or partial hospital (day treatment) – the child eventually will need to be returned to the care of her/his parents. And those parents will have to have been educated in that care and made to feel a part of it.
This is perhaps the greatest weakness of residential care. By definition, the child lives away from home at the center and treatment is around the clock, seven days a week. Although some residential centers make a brave attempt to include “family week” in their programs, this is still a far cry from being included in day-to-day eating and meal planning. It is very common to see children and teens do well in residential treatment and almost immediately relapse when they return home. Most residential treatment centers refer a child back to that old cocktail of “therapist, dietician and monthly doctor appointments.” By design, graduates of residential programs are “forbidden” from calling the therapists who treated them in the residential setting. Having not been a part of the treatment team, parents are at a loss about what to do to maintain any treatment gains. In other words, all too often, residential treatment just winds up “kicking the can further down the road.”
Don’t get me wrong, we do send some kids to residential treatment – just very few. At Kartini Clinic we provide inpatient medical stabilization at Randall Children’s hospital, on a service designed by us to be as brief as possible whenever it is needed. Then we treat children and teens in our partial hospital (PHP, or day treatment unit), where they are with us five days a week, spending nights and weekends at home. Parents are always part of meal planning and execution from day one. We have parent classes and nurse education to help with this sometimes daunting task. We start the way we mean to finish: with parents in charge of food and kids learning to eat together with their families again. We always achieve weight restoration.
Once the PHP level of care has been mastered, our kids are stepped down to intensive outpatient treatment (IOP), where they spend around four hours a day with us and are returned to school as soon as possible. Children with other psychiatric conditions may need long-term therapist follow-up in their home communities, or continued medication, but many children merely need the continued support of their parents to stay on the meal plan that works for them.
There was also little discussion of medication in this article. This issue was not brought up as such but, in our experience, children and teens are often way over-medicated in these institutional settings. I don’t think this is intentional “sedating” but is, rather, a byproduct of the fact that many, if not most, residential programs began as adult centers and gradually took patients at younger and younger ages, without understanding that children are not “miniature adults .” We routinely see patients returning from residential care with a laundry list of medications in hand: stimulants for “lack of focus,” sleep medications for insomnia, proton pump inhibitors for “reflux” or “gastric distress,” antidepressants (sometimes several), antipsychotics, and mood stabilizers. And there are few if any medications without side-effects and co-occurring effects on each other. This is not pediatrics, but adult medicine. And it’s not necessary for children.
Lastly, there was lots of talk about cost and even the ACA (aka Obamacare), but none about Medicaid. In the often bizarre and always bewildering world of American health care, families are often hung out to dry. Kids are often yanked out of treatment at all levels because, for example, an insurance plan suddenly deems further treatment not “medically necessary.” Often this occurs far too early for them to function well at an outpatient level of care. In our experience, insurance companies hire consulting “doctors” – frankly, I hesitate even to acknowledge them as such and have written on this subject before – whose sole purpose appears to be to limit access to care while pretending to “lower costs.” Lower costs for whom? Certainly not for consumers, who face relentlessly increasing premiums and out-of-pocket costs. This insurance denial is one of the main reasons that parents wind up spending huge amounts of money despite having insurance benefits. In my opinion, the story of the greed of the insurance companies is the one that needs to be told, not one that strongly suggests greed on the part of residential care providers.
But how about those kids whose insurance is through the state? The once widely held belief that AN was only seen in rich kids has been repeatedly debunked. We have patients in our programs from all walks of life and backgrounds. And how do they get help? If they are lucky to live in a state like Oregon they have some variety of Medicaid insurance. That should help, right? But no, because most of the residential centers who treat children do not accept Medicaid; when we have a severely ill child in our program who needs residential treatment, we have little choice about where to send them for care. Neither of the big centers with access to the best providers accept Oregon Medicaid plans, and we are left with “second choice” centers with less volume and less experience with medical care of children and teens, many operating along outdated lines for treatment of these brain disorders. This must change.
