July 16, 2012

her husband's neck

Dear, wise Colleen has -- as she often does -- described it well:


"it was a tough position for my husband--to have our well-credentialled professionals saying one thing and his wife saying something very different based on her research and other parents' experience. The poor guy's head was going back and forth like watching Wimbledon at our therapy sessions when I challenged our daughter's therapist. Who should he believe? The professionals? His wife? He wants to be a responsible parent but where is the safe path?"

This is the central dilemma. Parents are rarely told all the options -- in some health systems and most financial situations there are no options. We are told what the clinician in front of us believes and has on offer. THEY usually don't know there is any other way.

If, by chance or out of frustration, we go searching for more information and discover that there are plenty of other ideas out there we can't just take our marbles and leave. We have spouses and other professionals and often OUR OWN DOUBT in the face of a terrifying diagnosis we never planned to face.

There is no central authority to consult, no Whatthewhatipedia, no "See honey, I was right." It's just my intellect and instinct against yours.

Because even in the "field," there is no agreement. Not one single fact about eating disorders or their treatment. Not even the definition.

When I ask leading thinkers on this, their answer is often "Well, the family should get a new provider because WE don't do that." Except how is a family to know which WE to choose?

Until the clinics and clinicians and health systems and insurance companies start holding one another accountable it will be left to us, the consumers -- and that means parents, folks -- to MAKE them do so. We may need to do a little re-feeding protocol: "I'm sorry this is difficult for you but we love you too much to let you continue to starve families of the support they need. We're going to sit here until you come up with some standards and some consequences for those who don't follow them. We're not going anywhere, and neither are you. One more bite now, you can do it!"

7 comments:

  1. "Like". One of the things we _can_ do is carry one of those little purple and white pamphlets published by the AED in 2011 (2nd edition) titled "Eating Disorders: Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders" to local doctors and pediatricians. It's also online at http://www.aedweb.org/AM/Template.cfm?Section=Medical_Care_Standards&Template=/CM/ContentDisplay.cfm&ContentID=2413 On page 15 is written: "Parents/guardians are the frontline help-seekers for children and adolescents with EDs. Trust their concerns."

    Perhaps the next step is to publish a pamphlet with simple (?) guidelines that can be given to parents about basic refeeding information that refers them to the F.E.A.S.T. site? Maybe there is such a thing already? I often refer people to the books out there such as Brave Girl Eating but at the beginning who has time to read an entire book, no matter how wonderful it is? I also was thinking, Laura, that maybe it's time to take what you offered at the recent symposium and present a TED lecture.
    8-)

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  2. I think I'm going to need a lot of therapy to get through sitting beside the industry as a whole or providers as individuals but it really is the only way - and it's going to take a LOT more than 24 sessions isn't it?!

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  3. I think an FBT treatment provider would listen to Colleen and her husband with great respect. He or she would ask that they get together and develop a plan for how their child will gain weight and restore normal eating patterns. The provider would not order them around, arrogantly claim to have all the answers, or argue with them. When Colleen and her husband developed their plan, the provider's role would be to back them up, not to second-guess them. Under that approach, Colleen's husband would not find himself in the middle of an exhausting dispute between Colleen and the provider. Colleen and her husband would be invested in the plan because it would be theirs, not somebody else's. They would carry out the plan and make adjustments as needed, based on their on-the-ground daily observation of what seems to be working and what is not. The husband would be encouraged to help find solutions, even though he might not have read the literature on anorexia nervosa. The eating disorder would have little chance of surviving when Colleen and her husband were united behind the effort, not split by the professional.

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  4. Lovely scenario, Anonymous, but not the same problem. 95% of Mr and Mrs Colleens have gone in good faith to a local provider who doesn't offer FBT or believe in it. So Colleen's ability to get Mr. Colleen to consult an FBT provider would require: knowing they exist, knowing why this approach might be helpful, there being one equally close and covered by insurance, and some way to convince Mr. Colleen that this is a better option. On what basis?

    The point of Colleen's original comment, the one I'm agreeing with, is that as lucky as Mr. Colleen is to have a Colleen he is quite right to wonder who to listen to. This field is not unique but is peculiar and infuriating in that there isn't a source that Colleen can brandish that will give her the authority or take the authority away from Nice Competent Appearing Professional With Many Years of Experience enough to seek a 2nd opinion. That is what I have been calling for years from the ED professional world. So far, no luck.

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  5. Laura,
    You are correct that most eating disorder professionals do not understand FBT, aren't trained in how to do it, and don't inform parents that it exists. This is the sad reality, even though FBT is the only model that is recommended by the U.S. National Institute of Mental Health for the treatment of anorexia nervosa in patients who become ill before the age of 18. FBT is also the treatment that, according to a review of all scientific literature funded by the NIMH, has the strongest evidence to support it, and is the one approach recommended by the American Academy of Pediatrics.
    In the U.S., healthcare providers are legally required to inform parents of the existence of all reasonable treatment methods, explain the known benefits and risks, and receive specific permission from parents before proceeding with treatment. Failure to do so is a violation of the law governing informed consent, as well as a breach of applicable codes of ethics.
    Parents who are not informed of FBT, therefore, should consider asking for a refund from their provider, since the provider failed to provide professionally competent services. If the provider refuses to give a refund, the parents should consider a lawsuit for malpractice. It is my opinion, as a lawyer, that they would have a strong case. I think it is time to stop being nice since, as you say, we haven't had luck with the more collaborative approach.
    CB

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  6. Oooo, my husband's neck is famous!! Thanks, Laura!

    Laura, you nailed it exactly--the frustration of not being provided with even a hint of a path but all of the responsibility for finding one...with your child's life and future on the line.

    Jennifer, great advice! I keep a box of those AED pamphlets in my car and pass them out like Johnny Informationseed.

    CB, it might be really helpful to have a few of those lawsuits around to shake up and wake up the ED professional world.

    There is so much inertia there that there has to be a multi-pronged approach in order to get things moving in the right direction. We need top-down leadership from NIMH and the American Academy of Pediatrics and the AMA. We need more professionals like the O'Tooles speaking truth to their peers--that professional-to-professional level.

    We also need the grassroots, up-from-the-bottom, in-the-trenches viewpoint of parents. Since I'm a member of that group, I figure that that comes in a variety of packages: parents voting with their pocketbooks as to what kind of treatment they seek for their children--seeking out up-to-date providers and refusing to engage in non-evidence-based treatment (not always available). Parents working with the non-FBT professionals that are available and nudging them toward more evidence-based treatment (not always amenable). Parents going it on their own.

    One of the subsections of that group is the mad-as-hell-and-we're-not-going-to-take-it-anymore crowd. Lawsuits will make some providers perk up and take notice. Any chance, do you think, that it would backfire? That the standard of care would swing toward traditional practice (as a 'time-honored treatment') over new procedures?

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  7. CB, the system in the UK is less litigious. I can see that it might be appropriate in the US to sue for recovery of costs spent on ineffective treatment. Here we do not pay up front for treatment so threats of lawsuits against clinicians who have not directly caused actual harm, haven't bungled the delivery of a baby leading to cerebral palsy, or cut out the healthy kidney leaving the diseased one, are just not understood. We do have official complaints procedures and I would encourage people to use them if they have found their care lacking or harmful in some way. It doesn't have to be hostile or critical. In certain circumstances it can help those clinicians who are desperately trying to offer a good service but being blocked by lack of resources and understanding from the wider NHS. It can be a vehicle for making the system accountable.

    However a parent complaining only that they were not given ONE of the treatments that is currently available for eating disorders, for which there is much, but not conclusive, evidence, will find themselves in the same pool as those who are complaining that they did not get CBT, or a dietician, or psychological therapies, or an inpatient bed until nigh unto extremis.

    Sorry Colleen, your husband is going to have to keep watching the court of a while longer. I personally think that in order not to get a neck ache and to help speed up the game, it is a good idea for those of us who can to learn as much as possible about the field and collaboratively join in the game rather than to scream on the sidelines or pick up our balls and take them home.

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