January 28, 2014

We need to stop calling it "non-compliance"

June Alexander has a heart-rending post up today on her blog about the ridiculous idea of "compliance" with eating disorder treatment. Real people suffer horribly because of this concept.

It has always seemed absurd and cruel to me that we mistake the symptoms of mental illness -- anosognosia and anxiety and depression -- for willful lack of cooperation.

We actually treat them as if they should be GRATEFUL and that "lack of compliance" is some sort of selfish or lazy impulse. It's horrifying to me that we design our legal, practical, and community resources in such a way as to ensure that the eating disorder NOT THE PATIENT is in charge. This, we already know, Does Not Work. The miserable record of eating disorder treatment history tells the tale. It isn't anyone's fault this has happened but it IS our responsibility to fix it.

It is time to recognize that we do not have a system, except one designed by "ED" to keep patients unwell, keep loving families and caring professionals at bay, and keep from facing our compassionate responsibilities to other human beings.

"non-compliance" indeed.

20 comments:

  1. This comment has been removed by the author.

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    1. Honestly, FredT, I'm not sure what point you are making here. You seem to be disagreeing with me, which is fine. Yet you seem to be advising those with mental illness to "get a grip," which is not. At all.

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  2. It is entirely possible that the patient described in June's blog post was not well served by continued inpatient hospitalization, not because she was "noncompliant," but because psychiatric hospitalization of AN patients isn't necessarily the best approach. In an important paper published on June 17 in the Lancet, researchers found that a day treatment program was just as effective as inpatient hospitalization for purposes of weight gain, that the financial costs were lower in a DP program, and, perhaps most significantly, the patients in the DP program scored much better on measures of psychological well-being than those who were confined in a psychiatric hospital setting. Patients in the DP program spent evenings and weekends with family and friends. This improved mental health. Herpertz-Dahlmann, Day-Patient Treatment After Short Inpatient Care Versus Continued Inpatient Treatment in Adolescents with Anorexia Nervosa (ANDI), www.thelancet.com http://dx.doi.org/10.1016/S0140-6736(13)62411-3 This would suggest that the patient described by June might be well-served by transfer to an evidence-based day treatment program that includes involvement on a daily basis of her mother and other family members, who can provide valuable input and become active participants in her recovery, rather than being sidelined as parents generally are in inpatient psychiatric hospital settings.
    CB

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    1. Except that such a path requires an evidence-based day program to actually exist which, unfortunately, it does not (welcome to Australia's terrible mental health system). In addition to this, day programs are not suitable for those who are medically unstable or need higher level monitoring, which I believe may be the case for this woman.

      Em

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    2. When this hospital says the sufferer is "non-compliant," what I think it's really saying is that it is not able to figure out how to help her gain weight and re-establish normal patterns of eating. In that case, it's actually in her best interests to be discharged and for her family to think about a fresh approach.
      In searching for an alternative, I think it's useful to recognize that most of the mental health world is moving away from inpatient and residential treatment of people who suffer from mental illness. Experience and scientific studies are showing that generally people tend to recover better from mental illness when they live with their families and communities, not in institutions. I have personally spent many days observing what goes on inside eating disorder hospitals and residential treatment centers, not as a patient, but as a parent. In my opinion, these tend to be psychologically unhealthy environments. They actually cause much of the distress they are trying to alleviate. People, when confined to institutions like these, tend to become more anxious and depressed, not less. Short term hospitalization of anorexia patients is sometimes needed to restore weight and treat medical consequences of starvation, but long term hospitalization hasn't been shown to be effective or economical. In fact, it tends to cause harm to psycholgical health, for several reasons that are becoming better understood. The data from the ANDI study support this conclusion.
      If the parents of this particular patient are able to take her back into their home and refeed her, and help her re-establish normal eating behaviors, that would be the best solution. If not, a reasonable backup solution might be to have her live with her family and for the family members to take responsibility for making sure she attends a day treatment program, even if that means the family needs to move to a different geographical location. If there aren't any reasonable day treatment programs available in Australia, then it would appear the family has no alternative but to move to a different country, or else to figure out for itself how it will help this person recover. If the family isn't willing to take on that responsiblity, who else will?
      CB

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    3. As a parent who was unable to successfully refeed and deal with dangerous comorbidities at home I am deeply grateful for the 8 months of instituional care that made sure that my daughter is something called "alive" rather than something called "dead". Yes sure there were diaadvantages but it beat the alternative. During the time she was there there were times when she was completely non compliant, running away, agression, you name it. We were fortunate in that the psychiatrist and staff largely saw this as the behaviour of a sick person not as the wilful acts of a naughty one and also that as funding had been arranged that they were keen to hang on to the money. The admission wasn't arranged lightly. In fact it was almost too late. As with much of the world the UK has moved away from long term hospital care for most things and closed thousands of IP beds. It would seem that this is not the case in Germany where the ANDI study was conducted and it may well be that in Germany people are being needlessly institutionalised. In the UK people are dying for lack of IP beds.

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    4. By the way if the Australian family were to do as you suggest and move continent, where in the world, money, social support and border controls apparently being no object, would you suggest they go. I wouldn't suggest that they come here. There's a day patient unit within 2 miles but it relies on not just the "compliance" of the patient but the total collaboration and operates a "one strike and you're out" policy on behaviours that would undermine the programme. If there really is somewhere in the world where eating disorders are treated as biologically based mental illnesses, not choices, and families are given the full support they need to restore and maintain the physical and mental health of their loved ones, do tell. Then we'll all go.

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    5. Marcella, book me a ticket, too!

      The point of my post seems to be lost on our first commenter. The point of June's post was lost on the poster as well. The poster may need his own country where he can control the way things get done and what folks say about it and start his own discussions.

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    6. One point of the post, and comments, is that "we need to stop calling it 'non-compliance." Agreed. Another point, however, is that when certain professionals do call it non-compliance, and aren't getting good results, it's probably a good time for families to consider other models. We can't control what other people choose to "call it." The only thing we can control our response.
      CB

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    7. You make a good point CB, “ Lord, give me the serenity to accept the people I cannot change, the courage to change the person I can, and the wisdom to know it is me” and all that. We can't change the whole world all at once and walking away from harmful stuff is sometimes the only thing we can do.

      However it isn't just "certain professionals" who "choose to call" eating disorders "choices" and fail to provide an atmosphere in which sufferers can be helped to full healing. It is whole medical and legal systems. Some families may be able to go it totally alone and help their loved ones. Others may get lucky and have the choice of professionals with whom they can work. Most of us have to live in the complex, difficult world and accept the help that is available and try with all our might as June and Laura are doing, to change it one person, one unhelpful word, one damaging attitude at a time.

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    8. As a parent, you can spend your time trying to "change whole medical and legal systems." Or you can recognize that the systems are really screwed up and take matters into your own hands. That's what FBT is all about. It's about families taking responsibility for their kids, not placing trust in dysfunctional systems.
      CB

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    9. No, it's not. At all.

      FBT is a therapeutic approach BY professionals to help parents take responsibility for ONE aspect of treatment (feeding) for ONE phase of the approach. It is clinician-guided, and involves far more than just Phase One.

      Taking "matters" into our own hands, as parents, is something else entirely. But FBT, which is where the stats and the science you cite come from, is professional treatment of eating disorders. What parents do, during that treatment, is parent.

      The system WE are all trying to change is having parents take it into their own hands, or being ill-used by bad and antiquated treatment.

      Going it alone, and treating the professional world as unnecessary and dysfunctional, is not something I'd recommend. I want parents to be able to regard an eating disorder diagnosis as a treatable disorder and be able to rely on the professional world to provide good treatment.

      You can keep repeating your inaccurate, and harmful, misinterpretation of FBT (though, not here) but since what you are saying is not true you are only misleading parents. This is far too important a topic, and parents have been SO poorly treated, that it pains me deeply to see a fellow parent misleading and confusing mothers and fathers in distress - they deserve better.

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    10. I suggest parents read the FBT manual and decide for themselves what FBT "is," rather than trust Laura or me. The manual is brilliant precisely because it essentially advises the professional to defer to parents. By shifting responsibility to parents, who are seen as the experts, the professional no longer disempowers parents, as is the case with most other treatment models. It is a radical paradigm shift. It is difficult for many to accept.
      CB

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    11. On this I absolutely agree. Parents should read the manual, and they will see that it is not about parents "taking matters into their own hands" and is, by definition, a clinician-led treatment model which empowers parents to be the experts on their own family and the clinician's role is advisor on the eating disorder.

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  3. I see hope in day patient too not that parents and other family members are always included in the planning of such things as anything other than free night care attendants. I can't see it being of much help in the case described by June though unless the basic concept of "compliance" vs illness is dealt with. Day patient programmes usually rely very much more on the "compliance" of the patient much much more than inpatient programmes from the second day when the patient has to "decide" tocome back for more onwards.

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  4. technologically challenged here posting from phone but am really exorcised about this one. While the study and others are interesting and hopeful in part until the whole culture of treatment and understanding of eating disorders changes from a model which blames and demands "compliance" and "engagement" to one which understands that these are biologically based mental ILLNESSES not choices or behaviours or coping strategies or any of the other b%&&%@#* that is used to describe them and services and treatment and the law are designed and used accordingly, small studies comparing one unusual population (that lucky enough to get treatment at all at an early stage) with another one (that lucky enough to get innovative treatment at an early age and not be compromised enough by comorbidities, social circumstances or geography - there are lots of areas of the world where distance makes day patient impossible) are just shrill piping from distant ivory towers

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  5. In a world where there are choices between levels of care, and families there to support every level, we could have this conversation.

    Unfortunately we live in a world where mental illness is considered a willful choice or failure, treatment exists in little islands of limited availability, and patients themselves are expected to show motivation and insight in order to access care.

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  6. This really struck a cord as the parent of a young child with an eating disorder. My immediate reaction was "You mean there are actually those in treatment who ARE compliant?" That was not us. Unfortunately with a young child who is "non compliant" the little treatment islands for evidence based treatment for the youngest and most vulnerable that incorporate families is counted on less than one hand. And for those of us with a "non compliant" child ( I prefer to call acute rather than non compliant) we are forced with the psorspect of accepting beds or treatment often at multi focal locked children's psychiatric wards and suffer parentectomy at a young age . I know this is the thing that is railed against by treatment advocates" the use of psychiatric wards as treatment substitutes for evidence based treatment for the young. I know that my daughter was not "non compliant" or "willfull" she was just acute and needed evidence based care. We got it eventually and for that I am grateful. But thank you to June Alexander for shining the light on compliance and treatment....

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  7. Well written Laura. Being told that I am non-compliant, or 'refusing' has really affected me in my treatment. A big part of many eating disorder patients' illness is being good/perfectionistic, and for me, the thought that I was non-compliant made me feel terrible, as if I were bad/not good enough. It made everything worse. Thank you for getting this topic out in the open.

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  8. The IP program I was in is part of the greater psych ward, and some patients who were not in the ED program weren't grasping how I could be technically a voluntary admission and so damned "non-compliant." ED is a demon.

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