March 22, 2015

Parent engagement vs. loving detachment? Not the only choices.

It always makes me queasy to appear critical of other parents who have faced the hellish experience of having a son or daughter kidnapped by mental illness. As a parent advocate this is especially sticky  as I know there are plenty of folks out there all too happy to confirm their negative view of parents.

So, actually, I'm not mindlessly supportive of parents. I'm supportive of the parental role in caregiving. I'm supportive of parents doing the best they can, and of throwing off the myths and lack of treatment access that have characterized parents of mentally ill patients.

I reserve the right, and responsibility, to criticize the actions and attitudes of other people who are parents. I respect the right of all parents to their opinions and by that token hold them accountable for what they say as we engage in a mutually respectful debate.

I disagree with the mother who recently recommended that parents "You Can't Save Your Child From Their Anorexia." I think the message of the piece -- that of self-care and acceptance -- are lost in the heartbreakingly damaging title and in the equally heartbreaking conclusion that "none of it seemed to help."

I'm also going to come right out and express my dismay at fellow parents for missing the point of what the mother is actually saying. Her goal was to support other parents. She's saying what we all know is true: that in that time and in that health system she truly was not given the tools and support to help her daughter.

We all know this was true, and still is, in most places. We need to criticize THAT, and make sure to get the urgent news to parents that we CAN AND MUST engage in treatment and that does not mean we will drown with our beloved children. I have compassion for this mother and the choice she was made to make. I'm sorry she is recommending it to others.

I'm also saying out loud that this is not about Family-Based Treatment/Maudsley. By making it about that, parent advocates unknowingly into a dynamic that serves parents poorly and FBT as well. Parents need to be involved in and supported during treatment in every setting, every treatment type, every stage of illness, every diagnosis. Don't let FBT be the reason or the reflexive solution. Don't let people who dismiss FBT throw out the message that parent involvement and food is medicine at the same time.

FBT is not and should not be the only situation where parents are empowered and involved.

I'm heartbroken by the folks who will point at that headline, and the sad experience of this parent, and use it to do terribly harmful things:

  • Reinforce a belief that parents can not and should not help
  • Reinvigorate the idea of "enmeshed parents"
  • Make FBT into a zealot's cul de sac
  • Allow despairing parents to think that they should back off and "save themselves" when their loved ones need them most

Here's what strikes me most in the debate over this article. ED loves it. ED adores it. ED could have written it.

Parents shouldn't have to back off to save themselves. We should be able to be part of the picture in a positive, supportive, and supported way. We should not drown with our kids because both our kids and ourselves get the help we need early and ongoing.

There are times when ED wins the day, or the year, or even a life. Parents don't need to drown no matter what the outcome. The same is true for cancer or for schizophrenia. There are other choices between letting go and drowning. We need to ALL work to help families not have to make either choice.

26 comments:

  1. This comment has been removed by the author.

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  2. I don't think what you are describing is "the other side," Fred. We're all on the same side. The environment for all children should be supportive, calm, and well-informed.

    I don't believe anyone gets an eating disorder from their environment -- because I think EDs are a mental illness that happen in all environments -- but no child should be in an invalidating or negative or even just incompetent family and those who do have mental illness are especially vulnerable to a poor environment.

    Parents can and do make things worse, but backing off to take care of themselves is never going to be a direction I will recommend. If the family is unwell they ALSO need to be part of the solution. If the family is well-functining their support is critical.

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  3. Laura, you're already aware of my thoughts on the article you refer to here. However, I neglected to say that I agree that the title is awful! All that aside, though, I do completely agree with your other points here. I've always regarded your opinion highly and continue to do so. My big problem, though, is HOW can parents of adult children get involved with their treatment when the law says that we cannot? That, to me, is the biggest hindrance in this when the child themselves are so ill, their minds so consumed with ED thoughts, that they refuse all help.

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  4. One of the many probloems faced by both families and their loved ones is that methods relying entirely on parental love and fierce determination are being used in an environment where many still believe that parental failure is causative. In such an atmosphere support for those who struggle, for whatever reason, is inadequate.

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  5. Exactly, Marcella. Kind of like advising people to breathe deeply and calmly in a house filled with smoke!

    Advice to parents happens in a context and if the context is going to undermine even the best efforts of the family then it is inadequate. Still, the problem there is still the context and not the parents. Our legal and medical systems, not to mention our community and friends, need to be in place to support good parenting and good advice.

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    1. One of the latest fads in treating anorexia nervosa is known as Radically Open DBT. This model of treatment will be discussed in a featured presentation at the 2015 international conference of the Academy for Eating Disorders (ICED 2015) in Boston in a few days. www.aedweb.org The premise of RO-DBT, according to a proponent, Thomas R. Lynch of the University of Southampton, is that "Heightened threat sensitivity and diminished reward sensitivity are hypothesized to transact with early family experiences emphasizing 'mistakes intolerable' and 'self-control imperative' to produce over controlled coping." In other words, parents and families play a main role in causing someone to develop anorexia nervosa.
      There are at least two problems with this approach. First, the outcome data from clinical trials has been dismal. In one experiment published by Mr. Lynch, 47 people who suffered from anorexia nervosa were treated with RO-DBT. Thirteen (27%) dropped out of the treatment. Of the remaining 34, only seven met criteria for full remission. In other words, out of 47 people who entered the treatment, the success rate was only 15%. This makes it one of the worst treatments available. The study is available online, Lynch, Radically Open Dialectical Behavior Therapy for Adult Anorexia Nervosa: Feasibility and Outcomes from an Inpatient Program, BMC Psychiatry 2013, 13:293
      A second problem with RO-DBT is that the premise is false. There is actually no evidence that people who suffer from anorexia nervosa had any particular kind of early family experience, and specifically no evidence that they grew up in a family in which mistakes were not tolerated or self control was taught as an imperative. The best available studies to date show that the family experience of people with anorexia nervosa is statistically indistinguishable from that of the general population. The low rate of success of the RO-DBT model is probably explained by the fact that it makes these false assumptions about families.
      The Academy for Eating Disorders is highlighting Mr. Lynch as a featured speaker at the ICED 2015 conference on April 22.

      According to Mr. Lynch's biography on the University of Southampton website, he is "well known for being an authoritative, entertaining and charismatic speaker." It must be fun to be entertaining and charismatic.

      It is because the Academy for Eating Disorders features speakers like Mr. Lynch that most parents will be boycotting the ICED conference again this year.

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    2. On RODBT, I don't find it all that different than much of the rest of what is offered to patients: based on false premises and with little to no evidence of efficacy. The ED field lacks standards or even a consensus on what EDs are, not to mention how to treat them. I wish they did.

      But your last comment is just weird. Boycotts? "Most parents" Complete nonsense.

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    3. The prevalence of anorexia nervosa in the U.S. is around 0.3%. This means about 1 million sufferers and 2 million parents. How many of those parents are interested in joining the Academy for Eating Disorders or attending the AED conference? Maybe 3? The boycott is not organized, but parents are voting with their feet.

      Most parents I know (and I talk with many) are convinced that the AED, and most of the eating disorder profession for that matter, is so screwed up that it's best ignored.

      The presentation that Lynch will give on April 22 on RO-DBT is simply the most recent example.

      Chris

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    4. Good advice, Chris: ignore it.

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    5. Parents aren't the only ones who boycott the Academy for Eating Disorders. Another example is the professionals who treat anorexia with the Mandometer method. Mando has shown impressive results, better than any of the mainstream psychotherapies. As reported in a major paper, 1,428 patients with eating disorders were treated with Mando in six clinics. The rate of remission was approximately 75% within a median of 12.5 months. Bergh, Effective Treatment of Eating Disorders: Results at Multiple Sites, Behavioral Neuroscience 2013, Vol. 127, No. 6, 878-889

      None of the mainstream psychotherapies, including psychoanalysis, psychodynamic therapy, family systems therapy, and cognitive behavioral therapy, come close to these results. In fact, most of these mainstream psychotherapies result in rates of remission of less than half the rate of Mando.

      Mandometer views eating disorders as biological, not psychological, in nature. No blame is placed on the sufferer, her parents, families, or culture. Of course, this offends mainstream psychotherapists. Therefore, they tend to either badmouth Mando (when they aren't busy' badmouthing parents and families) or else they pretend Mando does not exist.

      The Mandometer professionals, like most parents, don't bother to attend AED conferences. AED is the mouthpiece for mainstream psychotherapists. Mandometer is an effective alternative.

      Chris

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    6. Mando has its own problems. They are an island of their own and allies of few. Research supports some elements of their argument, but not their results I was there the one time they did attend ICED. The people who they offended most were the FBT contingent!

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    7. Can you elaborate on what you mean when you say research does not support Mandometer's results?

      Also, why is it relevant that they "offended" some people? Are eating disorder professionals a bunch of children who can't control their emotions and are governed by emotional responses, such as offense, rather than by logic and evidence?

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    8. What I'm pointing out is that while FBT and Mando would seem to be more similar to one another than to other treatments neither camp agrees.

      On Mando:
      http://www.scienceofeds.org/2013/12/24/the-finest-quality-snake-oil-mandometerr-treatment-for-eating-disorders-part-i/

      I used to quite like the idea of Mando. Having met the founders and read the research and talked to families I'm no longer so enchanted.

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    9. Laura,
      I predicted you would cite that post by Tetyana as the basis of your argument that research "does not support" Mandometer. I discussed that very post by Tetyana with several professional statisticians at a major research university shortly after she posted. They confirmed to me that her analysis is flawed for several reasons, including those mentioned in the comments on her post. Her point is that since Mandometer did not work for everyone, it must be "snake oil." If that were the standard for evaluating treatments, however, we would need to conclude that all eating disorder treatments are snake oil, because nobody has ever designed a method that is 100% effective for everyone.

      At least the Mandometer clinicians are honest. If you read their paper carefully, you will note that they don't claim their method is a panacea. Instead, they conclude that, on the basis of the reported outcomes, further research, including randomized control trials, are warranted, testing Mandometer head-to-head against other models of treatment. Only someone with a closed mind would disagree with that.

      Personal "enchantment" is not the test that should be used to evaluate a treatment. Evidence is.

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    10. That post is not my reason. I've met the founders and their critics and read the research and talked to families who have been through the program in three different countries.

      So glad you can read my mind. I don't need to say what I'm thinking about your using my blog this way.

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    11. Tetyana failed to mention the most significant study involving Mandometer. It was published in the International Journal of Eating Disorders in 2012, IJED 45(2): 193-201. Lead author was van Elburg, It was a head-to-head trial of Mandometer versus Treatment as Usual (Netherlands). 54 AN sufferers were assigned to TAU; 25 to Mandometer. TAU had much higher dropout rate during treatment. At end of treatment, weight gain was the same in both groups; MROAS scores the same; eating pathology scores the same; no differences in ineffectiveness, interoceptive awareness, maturity fears, asceticism, impulse regulation, or social insecurity. Patients in the Mandometer group, however, emerged from treatment with LESS anxiety, LESS depression, and LOWER overall psychopathology. The authors conclude that: "Both Mandometer and Treatment as Usual are effective and the outcome data for both treatments are comparable with or even better than outcome data of other anorexia nervosa studies." (p. 198) In both groups, 41% of the patients made a full physical recovery by end of treatment. This is higher than traditional psychotherapy.
      Readers can go on the website for the International Journal of Eating Disorders and rent the paper for 48 hours for $6. I urge people to do it and draw their own conclusions.

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  6. I won't be ATTENDING the conference in Boston. I didn't attend the one last week in London either. However it's absolutely not a question of boycotting. I would have liked to have gone to London and I'd LOVE to go to Boston. There are some fascinating talks lined up. I won't be there because I can't afford either the time or the $$$s but I'm very much looking forward to hearing as much as possible about all of it including Prof Lynch's work although it isn't particularly new or unique

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  7. Parents would have had to have been ATTENDING AED to start boycotting it!

    Which we should, my friends. I believe the best path to change in the field is by showing up, speaking up, listening, and engaging with expectation of mutual respect.

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    1. Like.

      The internet gives those of us with limited time and money a chance to "show up" virtually even when we can't be there in person.

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  8. I love Laura's posts and the discussion they provoke. I'm going to AED iced this year and so are many of my fellow parents. And spending about 5k to do so including flying my mom to Tanzania to look after my ED child who is luckily doing well after 18 months of family Treatment along the Maudsley line. Of the three of us in my immediate family we had a range of treatments so I feel confident to discuss and actively participate (as well as an MPH and an MBA and a broad professional background in HIV programming and implementation). In going because I need to put my money where my mouth is and to meet my fellow global advocates. We will listen, ask questions, make alliances, and get prepped for a year of hard core activism and action! Look for us!

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  9. (Part 1 of 2)
    I’d like to address the misrepresentation of RO-DBT and the study cited in comments above.

    First: IMO it is either willfully misunderstanding or HIGHLY disingenuous, to write “There is actually no evidence that people who suffer from anorexia nervosa had any particular kind of early family experience, and specifically no evidence that they grew up in a family in which mistakes were not tolerated or self control was taught as an imperative.” Lynch et al make no such claim. AFAICT, like DBT, RO-DBT is agnostic as to *how* the patient got to where they are regarding their (mental) health, in terms of how treatment goes forward.

    DBT posits that emotional dsyregulation develops when a person is poorly matched to their environment. There is NOTHING *inherently* parent-blaming in this, but it IS often *mis-interpreted* to mean “The parents acted in invalidating ways” with the connotation of “Bad Mommy! BAD!” What is generally elided/misunderstood, is that an invalidating environment is MUCH more often due to your inherent neuro-peculiarities combined with a systematic lack of support for families (mothers specifically) than the consequence of jacked-up parenting. We don’t offer families help when they discover (for instance) that they have a touch-averse, anxious, unable-to-self-soothe child. The cultural scripts parents/Mothers are given contain skills that often make things worse; back to the example, being a cuddly, kissy mom like you see on TV, is going to freak this baby out. But no one steps in to say “No, the problem is NOT you’re a bad mom or your baby just doesn’t love you. What your baby needs is counter-intuitive to what we’ve all been taught. You both need support learning how to make the world feel like a safe place, because this baby has a naturally worried brain.”

    Second: DBT was developed for an “intractable”, chronic population who did not benefit from TAU. RO-DBT is being developed SPECIFICALLY TO ADDRESS adults with SE-AN. Where DBT was developed for a highly dysregulated population who had lengthy histories of treatment failure, RO-DBT is modified since its target population is *overly rigid* people with lengthy histories of treatment failure.

    There’s solid evidence showing that high cognitive rigidity and “over-controlling” personality features – highly aversive, risk avoidant, inhibited on social function – are over-represented in SE-AN, even given that these traits are frequently pre-existing in R-AN children. Further, scoring high on these traits is predictive of poor ED treatment outcomes overall regardless of patient age.

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  10. (Part 2 of 2)
    Third: The theoretical AND clinical reasoning behind RO-DBT is sound. The hypothesis is based on observed phenomena, proven treatment, and a sound etiological understanding of the population they are dealing with:

    1. There is a large population of SE-AN who do not benefit from TAU (if they could, they would not be SE-AN). FBT was not developed for them, and generally they are not great candidates for formalized FBT.

    2. Perpetuating & predisposing factors to SE-AN that have been elucidated include a very high degree of over-control and cognitive rigidity.

    3. If we successfully intervene on these traits, maybe we can make better progress on these patients.

    4. SE-AN shares key traits with the original DBT targets – refractory to treatment & labeled “poorly compliant” because their disease impairs their ability to engage, prolonged & complicated clinical courses, highly suicidal, very low social function.

    5. DBT is eminently successful, validated over 20yrs, and proving increasingly adaptable to other populations from the initial chronic borderline-personality clientele.

    6. The features that are different – over regulated rather than dysregulated, mean that DBT needs to be adapted.

    7. Other populations with this other cluster of cognitive/personality features are being successfully treated with improved functionality (autism spectrum conditions in particular).

    8. Therefore we will take these successful treatment premises and techniques and map them onto an existing proven therapy.

    9. Hypothesis 1: This will help SE-AN patients improve clinical outcomes.

    Last: CONTEXT MATTERS! The literature shows that treatment drop-out for SE-AN is something on the order of 50% (range ~25 – 75%), Compliance actually is WORSE than the literature, because a large number of studies never get off the ground or are terminated early due to poor enrollment and compliance and early drop out –SE-AN is well known for this. The reported protocol completion of 73% is among the BEST achieved to date in this population. (The anonymous critic would do well to review the principal of GENERALIZABILITY. Direct comparison of adults with a mean age of 27 to a population with a mean age of 15 or 17 is just ... bad science.)

    The literature on adult treatment shows abysmal results (hence, SE-AN in the first place). That a pilot study in this group achieved 15% meeting full recovery and another 24% partial remission, is at minimum proof of concept, and again, among the most promising early results in SE-AN to be reported (the best of which I’m aware, but I claim no mastery of the entire field).

    One of my mentors, generally regarded among the world’s best in his (unrelated) field, has a saying I love – “Let not The Perfect be the enemy of The Good”. People living with SE-AN currently have very poor options. We DO know that they face high rates of early mortality, chronic un- and under-employment & hospitalizations, social isolation, and terrible quality of life. Mitigating ANY of that is a clinical WIN and represents real relief to people who deserve it.

    Moreover, one of the major barriers for SE-AN *is* their social isolation – which is a poor prognosticator for recovery, regardless of the disease. R-AN recovery takes a VERY robust support net for success. To the extent RO-DBT alleviates social isolation as reported, it has potential to help patients re-connect with people who love them and are invested in their recovery. It is likely to have effects beyond formal treatment protocol.

    RO-DBT is unlikely to be perfect. Or a panacea. But it’s showing promise as a much needed tool.

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  11. Actually, Mr. Lynch does contend that sufferers from anorexia nervosa grew up in families in which mistakes were not tolerated and self control was taught as an imperative. A synopsis of his upcoming talk at the Academy for Eating Disorders is available online, at www.aedweb.org Click on the home page for ICED2015. Then click on Clinical Teaching Day. His talk is described. Among other claims he makes is that "RO-DBT posits emotional loneliness as the core problem underlying maladaptive control. Heightened threat sensitivity and diminished reward sensitivity are hypothesized to transact with early family experiences emphasizing 'mistakes intolerable' and 'self-control imperative' to produce over controlled coping." Those are his words. I'm merely copying them.
    I don't see evidence that this characterization of families is either accurate or helpful. I find it misleading and damaging.
    Maybe 15% of sufferers recover with this treatment. Eight-five percent, however, did not. How much damage was caused to that group of 85% and their families, who were in effect blamed for the sufferer's condition? We don't know.
    Chris

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    1. My, that IS quite the Gish Gallop! Where to start?

      I usually eschew playing to the cheap seats, but for those who may actually be reading for comprehension, here goes.

      1. Generalizability recognizes the logical truth that *some* of $_Population X is NOT THE SAME THING as ALL of $_Population X. Rhetorical tip: if you use a class descriptive like "sufferers of X", without modifiers like "some" "most" "at least 1", then people think you mean all of them. IN CONTRAST, Dr. Lynch is speaking *only* to an explicit subgroup of anorexics who suffer prolonged disease course where maladaptive over-control is contributory. What he posits is therefore *explicitly NOT* generalizable to people who do not fit these criteria.

      2. A blurb in a conference program is NOT THE SAME as a whole theory. The saying "a little knowledge is a dangerous thing" applies. Representing a few sentences from a single (non-research) source as intimate understanding of a larger body of work is sloppy ass crap. I recommend spending less time on your copy-pasta skills and more on reading for understanding.

      3. Failing to distinguish *your* interpretation bias from the actual evidence at hand. This phrase: "Heightened threat sensitivity and diminished reward sensitivity are hypothesized to transact with early family experiences emphasizing 'mistakes intolerable' and 'self-control imperative' to produce over controlled coping" actually does NOT inherently presuppose any particular characterization of "the family". I know this, because I can hypothesize scenarios that fit the theory described, but don’t actually have anyone who isn’t the neuro-atypical person doing anything wrong, malicious or outside of behavioral norms. Frankly, that is an apt description of some of how both of our anxious children respond to the world. Oh, and that statement is not BLAMING anyone for being neuro-atypical. Describing a condition is morally neutral. Blame is not.

      4. It's disingenuous to posit prejudicial facts not in evidence. Show me the evidence that families WERE *blamed*. Reading the methods in the paper YOU cited, I don't see any evidence that this was the case. You do it again here with - "How much damage was caused to that group of 85% and their families, who were in effect blamed for the sufferer's condition? We don't know." Exactly HOW are you defining "damage", and which steps of the treatment were likely to cause this damage? Because if we don't have a priori "damage" criteria and a plausible mechanism of action, it's an unanswerable question. So no doi, we don’t know – we *can’t* know under the current conditions, and the only rhetorical purpose of this is to lob an emotional volley. Malicious notes about Dr. Lynch passed during lunchroom meet the same standard of rigorous inquiry.

      I'm not saying that the work or the theory or the good Dr. himself are beyond reproach or critique. It's actually my *profession* to lob vigorous critique at research as part of the process of doing our own work. But that means I actually have to do the legwork to mount *substantive* and *meaningful* critique.

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    2. Irish,
      I'll let Lynch's data speak for itself. A 15% success rate is pretty bad, no matter how you look at it. And the fact that he is a featured speaker at the ICED2015 conference sums up the state of psychotherapy for anorexia nervosa as it exists at the present time, as well as saying a lot about the AED.
      In case anyone wants to spend more time on RO-DBT, they can go to Lynch's paper in BMC Psychiatry, Radically Open Dialectical Behavior Therapy for Adult Anorexia Nervosa: Feasibility and Outcome From an Inpatient Program, BMC Psychiatry 2013, 13: 293 (full text available, free) . He makes the same negative statement there about families as he does in the synopsis for the ICED2015 conference. Another enlightening source of information is the journal Mind Café. It has an article about the RO-DBT presentation at the APA conference in New York last year. The article is entitled Radically Open Dialectical Behavior Therapy (RO-DBT): A Mouthful That's Worth Tasting!
      The author describes the role of the family thus: "Families may have a role here [in the development of anorexia nervosa]. If the stated or underlying message is that mistakes are intolerable, and displays of strong emotion are punished, ignored or invalidated, it is easy to see how a young person might inhibit emotion, curtail spontaneity, strive for perfection and deny their own personal needs." The author then goes on to suggest that therapists themselves might benefit from RO-DBT treatment. After all, says the author Mark Sanbrook,, psychotherapists are such "high achievers."

      Chris

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