The Truth about Family-Based Eating Disorder Treatment
This week’s blog is an excerpt from my upcoming guide to eating disorder treatment, Give Food A Chance (PSI Press, 2010). This excerpt deals with the essential role of the family in successful eating disorder treatment of children and why it's sometimes one of the hardest message to bring to parents.
At the Kartini Clinic, over the years, we have made just about every kind of mistake. One thing we have learned never to do, no matter how tempted we are to care for a “high-profile” patient, is to accept care of a child whose parents will not be involved. It just doesn’t work. Without a supportive adult caretaker, the prognosis for an eating-disordered child or young adult is grim. I discuss the special situation for young adults at greater length in the chapters on the Day Treatment Unit (also sometimes called “Partial Hospitalization”), but for now let me say that parental unity with the team has proven to be the critical - the essential - ingredient in successful treatment: Parents and doctors in coalition against the disease, on behalf of the child. Nothing else works as well.
Over the years we have also learned to avoid what can only be called “enabling” of the eating disorder. This occurs when the patient is allowed (by the doctor) to stay at a suboptimal weight because parents are unable to supervise meals adequately or cannot be convinced to keep a food journal or cannot bear their child’s distress at weight gain. It occurs when families refuse family therapy participation because they insist that their child is “the one with the problem,” or when families demand outpatient treatment (or doctors propose it) when the child is too medically compromised to benefit from it.
Over the years we have watched individual therapists, physicians and nutritionists continue to see terribly compromised patients in an outpatient setting in the belief that “some treatment is better than none,” with the result that the child is enabled to remain in a limbo of partial weight restoration. This situation, although not good for adults either, is particularly grave for children, who have a finite window of opportunity to achieve normal growth and brain development and to lay down bone mass. It is essential that parents find providers who have the courage of their convictions and who will act in their child’s best interest.
You need a doctor who will give it to you straight, not be afraid to tell you what you may not want to hear. Parents are a child’s best advocates. Doctors: Tell them what they need to know and what they will have to do and then be there for them when things get difficult.
excerpted from Give Food a Chance, PSI Press, 2010. All rights Reserved.
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Ugh. Kartini's approach and the "Maudsley Method" may work for some, but it is so incredibly harmful to others. It has taken me over 6 years to get over the damage that Kartini fostered in my family. Thankfully I am finally beginning to be able to have a normal relationship with my family, but putting them in the position of the "food cops" and giving them total control over my life seriously harmed my development, warped my family, and helped further ingrain my eating disorder. The "parents and doctors in coalition against the disease, on behalf of the child" does NOT always work. What it did in my case is make me sneaky, hateful, and determined to hang onto my eating disorder no matter what the cost. Feeling constantly ganged up upon drove me underground and made it so I still, years later, am almost incapable of relating normally to my parents in many ways.
I can honestly say that I have massive amounts of PTSD from my time at Kartini. The threats, the coercion, the dismissal of my feelings - it was such a nightmare. I accidentally stumbled upon this blog and it makes me ill to remember my time in this program. Only now that I am finally being treated as an adult have I been able to even begin to come to terms with my eating disorder and choose recovery for myself. It's great that this approach works with some people but saying it's the only way is just WRONG. You cannot treat all people with eating disorders the same, but I guess it was too much trouble for you to try to deal with anyone who didn't fit into your little mold. It was such an utter failure in my case. It truly has made it infinitely harder for me to even entertain the notion of recovery because, in my mind, it's so inextricably linked to the horrible period of time I spent as an inmate of the Kartini program and Maudsley Method.
Again, I'm not trying to imply that this method never works. Clearly it does for some. But, especially in those who are older, it is NOT a cure-all and it can even, like I said, make things much, much worse. I would have so much appreciated being treated like an actual human being rather than just force-fed and told that eating massive amounts of butter would make my eating disorder vanish because the only thing wrong with me was that my thinking was warped due to poor nutritional status. Anyways, I don't even know what the point in posting this is, but I cannot help myself.
Dear anonymous,
Perhaps you thought I would not publish your anonymous post, since you are clearly very unhappy with us and our treatment approach in general. But, you know, I think it is a good thing to have posts that raise uncomfortable questions.
I wonder how old you were when you were a patient here? You make a very good point that “parents and team in coalition against the disease on behalf of the child” is difficult for many (but not all) “older” patients (say 17-22) to accept. It is particularly hard when the illness has gone on for some time, which is why we urge parents and providers to make the diagnosis early, before a child is developmentally at a place where this approach can be more problematic.
Of course, the relationships which our patients have with their parents before the onset of the eating disorder vary tremendously, as well. In some families parents are considered to be “in charge”, in others the kids are “in charge”, in yet others it would be a mixture. The culture of some families makes our approach difficult, some patients are more resentful of “being told what to do” and are never able to separate firmness towards the ED from firmness towards them as a person.
The important thing is that you seem to have found what works for you. May you find happiness.
what about children whose parents were abusive? What about adults whose parents were abusive unsupportive and also sick with no desire to recover themselves?
Are you saying that because my family disowned me and refuses to be a part of my life (as do i refuse to be a part of their life also) that i am doomed to die of anorexia? Are you saying that unless i let my sick unstable family into my recovery i have no chance of recovery?
BS i think this is all a way of making parents feel better about the tragedy of having sick children and no control over whether or not they recover.
The bottom line is recovery is up to the individual it is a choice, and if the individual doesn't care about themselves no amount of parental support will ever permeate.
This mentality makes me want to kill myself because its basically saying, i have no hope because i am not and will never allow my sick family to be a part of my recovery especially since they refuse to seek their own recovery. Why would i ever let them into my life when they are the root cause of my disorder in the first place?
My mother wouldn't be a part of my recovery when I was a minor why would she do it now when she has admitted she knows im sick but doesn't want to help?
Wow well at least I know that there is no point in trying to recover. Ill go ahead and start saying my goodbyes now.
Dear anonymous:
When I read your post I think of one word: suffering. You have clearly been suffering for a long time. But now is not the time to give up on yourself. This would just be following the pattern of your abusive parents who gave up on you, it would seem, long ago.
There are few things sadder than an ill child abandoned, even abused, by their parents. Obviously such parents cannot be a part of treatment. In those cases where parents are abusive or severely mentally ill (often the same thing) or are dead, our style of family-based treatment can be done with another family member or close friend. We have occasionally worked with foster parents as well.
Don’t give up.
Dr. O'toole:
When I read your response to *anonymous*, I was very impressed with how you awnsered and sought out what you wanted to say. Not everyone would have posted a comment that was against their "program".
Thank You. I will miss seeing you once a week!
The kartini program does not work people! St.vincent's is so
much better! Kartini may work for young children but you guys should have no business with young adults. I hated being treated
as an eating disorder and not a person. There are a lot of ex kartini
patients at st.v's and we all have nothing good to say. I'm in recovery now with no thanks to anyone at kartini. Therapy is almost
nonexistent at kartini and to do all your meal increases in benecal and whole yogurt is ridiculous. I have finally learned to enjoy food again and that means variety! Food is not just medicine it is meant to be enjoyed and that gets completely lost in the rigidity of the kartini meal plan. Kartini I beg you to stop turning parents against ther children and parents I urge you to not get caught in the lies. You don't need to get guardianship to help your child just send them to st.v's they will never ask you to do such a degrading thing.
Dear Anonymous -
Your response sounds like you are distressed, but we assume your comments were intended to reach out to other parents and patients, in an effort to help them. So in the same spirit we would like to offer our own perspective on these issues, in the hope that some will find them informative and useful.
You mentioned that you “hated being treated as an eating disorder and not a person”. Such a sentiment is entirely understandable and indeed quite common. And we absolutely believe that every person in our care is unique and different. But we also believe that anorexia nervosa, much like any other human illness, is a constellation of symptoms—a recognizable pattern—that varies only moderately from person to person. This approach is grounded in an understanding of the medical nature of this disease. Those who suffer from it share certain symptoms and issues, just like persons with type 1 diabetes will also share certain symptoms and issues of that disease. The comment that “ therapy is almost nonexistent at kartini” would come as a surprise to our staff, most of whom are licensed therapists who work tirelessly with our patients and their families each and every day. Nonetheless, we are always interested to hear of patients who have found helpful therapies at other facilities. We know and respect the staff of the program at St V’s. We often have patients who have been through it's program, and vice versa, sometimes for reasons that have nothing to do with the respective programs (e.g. insurance).
Dietary “add-ons” (such as Benecalorie and live-culture yogurt) is a theme we have written about a lot, but let me briefly state our basic approach again here: when a person starves and loses weight (for whatever reason) their body goes into a hypo-metabolic (slow metabolic) state to conserve energy. It will stay in that state as long as food intake is inadequate. Then, when food is added, the body goes into “hyper-drive” and becomes hyper-metabolic. This means that a person will then have to eat more—often much more—than when they are normo-metabolic. Having to eat so much food can be difficult for anyone, and especially those struggling with an eating disorder. So to minimize the size of the meals, and to add calories in a form that will be easy to remove, we use yogurt and/or Benecalorie. As the metabolic rate then curves back towards normal, we remove all add-ons. Precisely because these add-ons are not especially delicious, they are easy to get rid of. When we used ice cream and milkshakes to add calories and fat, people were very reluctant to stop eating/drinking them and sometimes would continue to do so while restricting other food. We do not expect or even want anyone to eat yogurt and Benecalorie forever; they are temporary measures while the body heals.
Lastly, the issue of legal guardianship, where a young adult’s parents take over medical decision-making responsibilities from them, is a sad but sometimes life-saving intervention. No one likes to do it; no one likes to recommend it. And we agree that it sometimes can be perceived as degrading; that is, until one realizes that guardianship is as painful for the parents, who, out of love and concern, must act decisively in the best interests of their child. They are making a very difficult decision and yet at the same time also a powerful statement of determination to help their child, no matter what. For those with similar feelings or concerns about our program we do hope this helps. We are the first to admit that our eating disorder program is not for everyone. No program is. But since 1998, and utilizing family-centered treatment and the Kartini Meal Plan from the very beginning, we have provided eating disorder help to hundreds of families and patients who have gone on to recover and to understand that their lives do not have to be controlled or defined by this illness.
We Love You Dr.O'Toole!