Readers of this blog know that Kartini Clinic offers inpatient medical stabilization, partial hospitalization and outpatient care, all entirely family based. We do not offer residential care. However, we find ourselves occasionally forced to refer a patient for residential treatment despite the fact that residential care is by its very nature not family based and despite the fact that the patient will ultimately have to return to their community and family and try to stay in remission under these less structured circumstances. In the past few days the New York Times has been following discussions about the pros and cons of insurance companies being forced to cover residential treatment. You can read about it here, here and here.
There are many problems with residential care from our point of view, not least of which is finding a treatment center which espouses our belief in anorexia nervosa and other eating disorders as medically based brain disorders with profound psychosocial and physical ramifications. And then to find one with a compatible approach to families is difficult. If parents are blamed, even vaguely, for their child’s illness, that is a non-starter. If they are told their child must “own their own recovery or it won’t work”, they will get no referral from us. If weight goals are either not established, rarely reached or consistently set too low, we will avoid such a place. But assuming a reasonable residential facility can be matched to a child, what are the other issues/problems with residential care?
Well, it is fabulously expensive. But so is a liver transplant in a child, or chemotherapy for rare conditions or reattachment of a limb following amputation, or surgery to correct congenital heart disease. But does expense alone mean such care should be denied or withheld until the patient is so ill that complete recovery may not be possible? I completely understand an insurance company’s need to scrutinize the treatment path designed or recommended by a physician, after all, if we had a single payor system with “health care for all” we would still need to scrutinize medical recommendations carefully in order to stay within the bounds of fiscal responsibility. But insurance company doctors should view such scrutiny as an attempt to help manage care, not manage money. If care is carefully, but scientifically, compassionately and effectively managed, the money will follow.
As far as I am concerned, though, the main problem with residential care is the commonly inadequate follow-up once a patient is discharged from a residential setting. It is typical for a patient to be discharged back to a “local therapist, a dietician and the child’s pediatrician”--- a wholly inadequate level of follow-up, in my opinion, and responsible for the notorious “revolving door” of relapse and return to residential care. No one can keep a child in remission except that child’s family. The parents must be taught how to manage and take charge of the food once the child returns home and is back in school. Any setting where this does not happen is not going to be effective. When we send our Kartini patients to residential treatment we request that the patient be returned to our Day Treatment Unit (DTU) for step-down before returning to a purely outpatient setting. We need to be sure that the child can be held in good remission by the parents before agreeing to have them seen at the typically low level of care exemplified by “outpatient”. Parents frequently need more support and training, something residential treatment does not provide.
And do our patients return to the DTU? Not usually. It is very difficult to get a residential treatment center to advocate for a return to our DTU. Once a patient has been sent to them they do not often care desperately how the patient is managed once they leave their doors. A referral back to “their local pediatrician and counselor” traditionally covers their responsibility. It has proven very, very difficult to get residential treatment staff on board with the concept of structured, supported step-down outside of their own facility. And equally difficult, parents often avoid the planned return to DTU after residential care as their child is usually “doing so well and looking so good”, that the parents have difficulty understanding why they can’t just “go back to school and be done with treatment”. Parents are sick of treatment (ditto the child) and just want to go back to normal. I could cry when such a patient is eventually given back to us by their pediatrician or counselor, having relapsed and lost the gains they made in residential. No wonder the payors are skeptical.
I have friends and collegaues in this field whom I admire who feel that residential treatment is outmoded and ineffective. To some degree, I concur, but only to some degree. And here’s where moderation needs to come into our debate. At Kartini Clinic we have three levels of care, which is unique in our state and unusual everywhere: medical stabilization (“inpatient”), day treatment (“partial hospitalization”) and outpatient. This allows us to serve most but not all of the patients sent to us. A tiny minority of those we evaluate or treat will need a 24/7 level of care, one that provides more psychiatric structure than the regular hospital can, although we believe that an inpatient, locked, general psychiatric unit is inappropriate at all levels of care, unless the patient is suicidal, schizophrenic or homicidal. That leaves residential eating disorder care as the 24/7 option.
What kinds of patient might I be referring to? How about the patient whose parents are both severely mentally ill and unable to follow any family-based recommendations? Or the seventeen year old patient who has been sick for eight years, who binges, purges, steals money, is addicted to heroin, who has no father and whose single mother has cancer with a five year survival rate of 50%? Or the patient whose mother has Munchhausen by proxy? Or the patient whose father travels abroad for his job and whose mother has an eating disorder, refuses treatment herself and cannot learn to feed her child adequately? Or the patient who has failed three trips through the Day Treatment Unit (DTU) and hospital? Or the patient with binge/purge anorexia who has severe, uncontrolled diabetes, which will lead inevitably to blindness and limb amputation, if not to death by brain swelling, who refuses to take her insulin, despite repeated hospital admissions, and who will not eat? These are extreme examples, but residential treatment is an extreme intervention-- or it should be. Believe me, in the annals of human suffering these cases exist.
I still feel strongly that insurance companies must continue to cover residential care under a carefully scrutinized set of circumstances: where 24/7 supervision is needed for safety, psychiatric intervention or medical supervision or where severe family disruption, parental mental illness or extreme behavioral dysregulation make less intense levels of care ineffective. However, a carefully orchestrated return to a lower level of care (typically not merely outpatient) is needed on discharge in order to prevent the “revolving door”. It is the revolving door of residential treatment, outpatient relapse and residential treatment again which is fiscally unsustainable and medically irresponsible.