November 15, 2012

making a success of Maudsley


I'm asked with some regularity by therapists for ideas or advice on cases where parents struggle to succeed in Family-Based Maudsley Treatment. They describe trying their hardest to empower parents who don't get it, relieve the guilt of parents who won't let it go, giving parents information they won't use. I can't imagine how difficult that must be on a clinician. 

Here was one of my recent answers, slightly edited:

What you describe is not uncommon. I've watched so many families start and stop and falter. I've heard from many clinicians with similar struggles. 

It could be that the families you speak of truly are not going to be successful. FBT has great rates of success but still only 80%, right? But we have to always consider that there isn't a good second option so giving up on FBT isn't usually turning to something better. If they don't make a success at FBT what's the alternative? Has every avenue of supporting FBT been tried? Quitting job, bringing in more adults, a leave from school, partial hospitalization, a family training week, anti-anxiety meds: there are usually options that haven't been tried.

Context matters, too. If a family has 50 minutes with you a week and the rest of their life is surrounded by people and influences that counteract what YOU are saying to them it's like being told to take deep yoga breaths in a smoke-filled room: right advice, wrong life to do it. And to absolutely TORTURE my analogy here, living with an anxious possibly fatally ill young person is more like trying to breathe in a burning house. You don't have control over all that. No matter how good YOU are, the family may not have the environment it needs to help them hear you.

We are a society that believes deeply in personal agency, in parents as friends, in food and the body as metaphors, and in the urgency of individuation. You can't erase that in a therapeutic method. Parenting style doesn't change overnight or through a simple intellectual discussion. Some families start out closer to the ideal FBT stance, others tragically distant.

What written and video materials are you giving them? That can really matter in giving context to what you are telling them. 

How firm are you in the dangers, the necessary commitment, and the difficulty?

You won't like this one… There are specific clinical skills to  empowering parents in this way. It really pulls against the usual clinical stance. Not all clinicians have drunk the Kool-Aid of complete confidence in parental ability, and not all clinicians are equally good at conveying both the confidence in the family AND the confidence in their OWN ability to guide them through it. People get down on FBT for being too out of the book but I really think this approach requires some of the best clinical connection and ability – but for the parents and not the patient, which is what everyone is trained in. I'm just throwing that out there, because the approach has to be a good match with the clinician, not just the family. That said, anyone treating child and adolescent Eds needs to get good at FBT in their toolbox, I believe. Have you had the train2treat4ed  training and are you in close touch with others who are working through this change in practice? 

Marital splitting is the single most undermining factor in FBT, from what I observe. The natural differences between men and women, the personal intimate history between a couple, the legacy of coping in crisis… it's rife with hazards. Many couples depend on that interplay to maintain their connection, even, or grudges nursed for years become icebergs of danger to the process of that "same page, same line, same letter." Ugh, the stories I hear. I get very frustrated with people.

I also see a lot of families who struggle intellectually with the concepts here. They grasp only one issue at a time and when relieved of that worry forget there are other layers. For example, "may die" becomes the only consideration and once the patient is, as you mention, a little better appearing the alarms are off and instead of tackling the next phase they go off to their regularly scheduled life. As tedious as it is, the world has to keep reminding the family that an eating disorder is not just a risk of death  now – it's a complex and chronic predisposition.

Each family has its own learning style. Some respond to authoritative words by the therapist, others like to be entrusted to read very scientific info, others feel condescended to with too much jargon, still others need to talk to others in their situation and some just distrust clinicians. Honestly, I wonder how I might have responded to FBT had it been offered to me instead of me seeking it out!

That said, I have seen ALL KINDS of families end up successful at this. Angry, meek, stupid, mentally ill, unpleasant, manipulative, anxious, self-involved, and even deeply disordered. I'm sure there are more suited and less but I've been amazed at the variety of ways it works out. So hard to know what the family CAN be if given a chance, good care, and time.

Last, I want to say how much I admire clinicians who do this work, like you. It's really hard. I know a lot of you and have seen the struggles and the flak you get from colleagues. I also know that it is harder in many ways than traditional therapy. But I do also see more and more clinicians who find their way and feel a great deal more effective and satisfied in their work when they are fluent and experienced in it, adding it to all the other qualities and therapeutic techniques that make a psychotherapist good at what they do. The fact is, you're asking parents to do very difficult stuff and even when you are right they are not always going to see that. Parents can be "a stiff-necked people."

10 comments:

  1. Terrific post! A good clinican makes it look so easy, but thinking back on our experience, it must have been really hard for our therapist to keep us all on track, even though what she was actually saying (over and over) was deceptively simple: parents feed, child eats, siblings support, good job, keep going!

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  2. "a good clinician makes it look so easy" - so right!!

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  3. Researchers at Stanford are conducting an experiment to try to help families who appear not to be succeeding with manualized FBT. The additional help, called Intensive Family-Focused Treatment, might be useful for some families. The researchers are currently recruiting for the study. Information is at
    http://edresearch.stanford.edu/studies.html

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  4. I've seen that study Anonymous and am very heartened by it. I have long argued that many could succeed with the method if they had much more intensive support and all families could do with more than a 50 minute session once a week.

    We were among the 25% or so of families who struggle with the method. I was interviewed about our experience yesterday. I surprised myself by my answer to the last question "are there any families who you think should not be offered this treatment". I said "NO". I meant it. With the right kind of support, information and care, which may include overnight home support and 24 hour helplines or intensive therapy for the parents and siblings to help them recover from the process or all manner of things far too expensive to delight insurance companies or NHS funders I really think they could.

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  5. So many valid points that hit home for me were made in the above. I have found, as a clinician, that IT TAKES A TEAM: Willing and open minded parents, Skillful, trained, competent, willing and dedicated clinicians/practitioners and ancillary providers and the ability of all to instill HOPE that recovery, FULL RECOVERY, not only can but will happen. I have revised the packet over time but always provide families with a comprehensive packet of information from the get go with starvation studies article, FEAST brochure and print outs, Specific book recommendations and a list of resources online and in print and try to educate parents and patient as much as possible about what to expect and about how hard it will most likely be while also identifying the positive qualities and traits that they bring to the table. FBT is not for everyone or every family. Not all clinicians want to or can do FBT. I don't do just 50 min weekly sessions, this would never get the job done, for me at least. I need to believe in the approach that I use, the patient and families that I have the privilege to work with and OUR ability to do whatever it takes to get through recovery and if and when it becomes apparent that we need to do something different then we openly discuss this. My experience is that with a team well armed with love, knowledge, training, skill that FBT works, Recovery Happens, Lives are saved and that makes it all worth while! Laura you have been an inspiration, a mentor, a role model and a source of endless support to me! <3 Stephanie

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  6. As you know ,I am the patent of a young adult. Naive at first to Ed treatment and illness when my then 19 yr old daught began her descent. I had a large learning curve which unfortunately took me to many different ideas from professionals on how to help and what treatment to follow. I found feast just around a 2 months into diagnosis (actually looking back it's was a kind therapist at the duke eating disorder program who wrote feasts web site on my manual) I was to uninformed by then to understand her illness or what the best plan was so I packed her up and headed home to NYC for what I though would have to have the best treatment in the country. It was suggested then that I take a leave of absence from work and stay down in north Carolina and work with them at fbt. I run that decision over and over again in mind because I think it might have been a very different outcome had I known then what I know now.
    From that point on we was subjected to the old school thinking of Ed treatment. My daughter was actually seemingly motivated to get well and return to school at first. Taking bus and train to manhattan to iop at Renfrew where they would not include us in the daily plan or communication. Our sole involved was once a week family therapy where the therapist felt we were emeshed that my daughter had to do this for herself and we could not help with meals at all. This was the beginning of the end as she became sicker and sicker and more depressed and losing weight.
    I don't want to drag this through because this scenario repeated itself many times over the last 3 years. It wa only once I met dr OToole and her team that the first real acknowledgement that we were vital to her recovery and a crucial part of her treatment team. unfortunately, by this time her illness evolved into a monster of complications. She was maxing out of age appropriate treatment at kartini and we couldnt move out there beyond our committment for the last nine months with them. There approach was like stepping into a wonderland of knowledge love and strong support and a very powerful tool for our family.
    Returning to new York proved difficult as once again fbt for young adults is non existent. We has the wonderful Sarah Ravin who in my eyes is a bright kind committed Ed specialist but my daughter needed more that a Skype or phone sessions could help. We were absolutely lucky after a few weeks have dr Omar Canosa join our team. Another absolutely committed knowledgable fbt supportive physician for our family. The problem was the program he was part of is adolescent up to age 18 or 21 (I forget) and my daughter needed more intensive outpatient care, so again she has spiraled down, each time seemingly sicker than before. We are now at etc in their adult in patient unit. And while their adult program is not fbt based they have been very open and accommodating to our families need to be actively involved. I do not feel pushed aside.
    Sorry for the long wordy post but ultimately what I'm saying is that I strongly believe that for our family fbt could have changed the course of this illness had we started with this modality. We are now fighting a very sick young women who doesn't believe she's ready or deserving of treatment and is striving for the lowest number she can get which could be death. She is safe for now. But our Hearts and spirits are broken and hanging from a thread.
    I wish that the kind of info and learning didn't have to come from feast. Not because I don't think they are invaluable and save lives but because it is the responsibility of the professional community to be informed and have a standard Not a potpourri of treatments few of which include fbt as a first line treatment

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  7. I so agree, Lisa. The point of F.E.A.S.T. was to be obsolete as soon as these ideas and values were just considered good sense and widely available. Progress has been slow and families like yours have been the ones who pay the price.

    Early intervention with family, evidence-based information, skilled professional team, FOOD, and optimism is like a first-line antibiotic that can keep an infection from becoming systemic. We have to keep fighting so families won't have to find that out late in the process.

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  8. And clinicians, please do not judge parents before you try! We had a therapist who said we couldn't do FBT because we parents are divorced. And after 7 hospitalizations under the care of that therapist, we tried anyway and with good results: no more hospitalizations and a slow but effective recovery (and it is now 3 years later). We were able to pull together very well due to our great love of our daughter.

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  9. I so relate to Laura's point about context. I wonder if the majority of families with an FBT therapist are ALSO forced into regular visits with other clinicians who undermine the FBT message while appearing to provide a seamless service. Parents need to be clear about what to do, and conflicting messages can leave them anxious and helpless. I'm guessing that often the FBT therapist's hands are tied by hierarchies and departmental divisions, and so doesn't intervene? I wonder how frustrated it is for them? In an ideal world, all the clinicians involved would be rigorously on the same page. If I ruled the word, FBT therapists would step in when their colleagues undermine the FBT process, and let the parents understand that the source of their confusion and stress isn't parental inadequacy, but clinicians with opposing models.

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  10. And I should have added: the clinicians who aren't on the same page as the FBT therapist also create havoc with the patient. The parents' job is made infinitely harder, trying to get their son or daughter back on track after a consultation. You guys know all this only too well...

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