The Misuse of Collaboration and Therapy to Deter People From Discontinuing Medication

Miriam Larsen-Barr, DClinPsy
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Recently I read a special report in Psychiatric Times that made me angry. I don’t usually read this publication and this article reminds me why. Here Gabriel Ivbijaro and Lucja Kolkiewicz produce five pages dedicated to improving adherence with psychiatric medication through collaborative care and the implementation of modified CBT.1 At no point does this article acknowledge the serious adverse effects of taking psychiatric medication, the legitimate reasons why so many people wish to stop, their right to decline treatments that aren’t working for them, or the possibility they may do better without medication in the long run. Improving adherence is really a nicer way of saying ‘convincing people to take medication they do not want to take.’ The use of the word ‘collaborative’ in this context is misleading and belies the true meaning of the term. They’ve taken a concept from the service-user movement and bent it to the meet the aims of the medical model. It’s a bit like Darth Vader taking the tools of the Jedi and using them for the dark side of the force.

Collaboration involves working together to achieve a shared goal. It takes place between partners who both have something to bring to the relationship. Collaborative care in mental health is not about people with greater power working together to convince a person with less power to do what the team believes to be right. But that is precisely what this article advocates. Here’s how the authors describe collaborative care:

“Collaborative care can be delivered in a number of ways, including: 1) A psychiatrist being aligned to a primary care team using a consultation-liaison model 2) Primary care being aligned to a psychiatrist or a group of psychiatric providers 3) Primary care teams working in a collaborative way to deploy their resources so that care is delivered seamlessly to the patient.”

They’ve forgotten about the service-user themselves, their goals and preferences, the knowledge and expertise they bring to the table, the fact that they are involved in this arrangement at all, and the reality that mental healthcare cannot be ‘delivered to’ people but rather must be implemented with them.

Using CBT to achieve adherence with psychiatric medication reeks of unethical practice and recalls me to the archaic practice of genetic counselling in which professionals seek to convince people with mental health problems that they should not have children. CBT delivered properly is not about convincing people that their thinking is wrong in order to bring them around to someone else’s way of thinking. It is often misused in this way, but not usually in the intentional manner these authors advocate for here:

“CBT specifically designed to promote concordance with medication can enhance motivation, support self-management, and enable clinicians and patients to work in a more collaborative way…”

My research into attempted discontinuation (Larsen-Barr, 20162) tells me that CBT and other psychological therapies could be highly useful for those who wish to stop taking psychiatric medications, not because it can be distorted to convince them to abandon their goal, but because it may help build the internal resources people need to successfully stop. My research tells me that it is possible to stop taking psychiatric medication and to go on to live well without it. Those who successfully stop long term appear to have developed strong self-reflective capacities, alternative means of coping with their experiences, and connections with trusted support people.

It would be a great disservice to the person entering therapy if that therapy were focused specifically on promoting medication adherence. The therapy would simply become another form of coercion — psychological and tacit instead of legal and overt. It is often fear of coercion that prevents people from voicing their desire to stop medication and from seeking support to do so. One of my interview participants explains that discontinuation is “a difficult road to do on your own” and I find it difficult to imagine how the approach outlined in Psychiatric Times could possibly do anything to improve outcomes for people who wish to stop, or reduce their desire to do so. Rather, it is more likely to drive people further underground with their attempts and further away from the forms of support that would assist them to do so safely.

Service-users in my research stated that coercion and discouragement from attempting alternative approaches left them trapped taking medications that made their lives worse, not better. Coercion could transform an unpleasant experience that could have been short-lived into a form of “hell” or “trauma” that they could not escape from without potentially losing their human right to choose for themselves. Two thirds of the 144 people I surveyed had thought about stopping the antipsychotic medication they had been taking, and 90% of them had attempted to stop at least once. Most people had made multiple attempts to do so, suggesting that they were persistent in their desire to stop, even in the face of discouraging responses from others. Importantly, half of them had succeeded in stopping for a year or more and none of those people described being worse off without the medication.

Mental health services are often grossly underfunded and under-resourced. Is improving adherence really the best use of their scarce resources? Discouraging people from their goals to be medication-free doesn’t actually discourage them but instead leaves people in the position of forging on with their goals alone, often without adequate information to make their attempt as safely as possible. In my study, people often believed they were withdrawing gradually, but attempted to do so in as little as 1-4 weeks, which is not really very gradual at all. Perhaps instead of working to “improve adherence,” mental-health services could work to improve the safety of non-adherence, or attempted discontinuation as I prefer to call it.

Non-adherence and non-compliance are loaded terms that speak to an inherent but often unacknowledged power imbalance that unfolds within a paternalistic system where doctor always knows best. It is becoming more and more common to read articles that employ the language of choice over compliance and adherence. This article in the Psychiatric Times shows there’s still a long way to go in the effort to introduce human rights into the equation. As I read, I was reminded more of the uninformed hate mail I received when I launched my study than I was of the research evidence regarding the long-term use of psychiatric medications. That body of evidence is relatively small, but almost universally shows that people who successfully stop taking medication show better or equal outcomes compared to those who persist long term (See Harrow & Jobe, 20073; Harrow, Jobe, & Faull, 20124; Laengle et al., 20105; Landolt et al., 20166; Wils et al., 20177; Wunderink, Nieboer, Wiersma, Sytema, & Nienhuis, 20138). In my own research, current use of antipsychotics shared a negative correlation with quality of life, but when controlling for age and occupational status failed to reach significance. Other factors were more important to people’s outcomes than whether they were taking ‘their’ medication or not.

It interests me that we refer to psychiatric medications as belonging to the individual in this way. Even the most cursory look at the standard prescribing relationship shows us that these medications belong to the professionals that prescribe them more than the individuals who take them or try to stop taking them. If you give me a gift that I do not want, and strap it into my hands so I can’t put it down when I want to, is it really mine? Should you dedicate your time, energy and resources to convincing me to accept and appreciate the gift and the unwanted weight it adds to my load, or should you help me untie the bindings and find a way to put it down?

Show 8 footnotes

  1. Ivbijaro, G.O. & Kolkiewicz, L. (2017). Partnering With Primary Care Clinicians to Improve Adherence. Psychiatric Times, Sep 29, 2017, www.psychiatrictimes.com/special-reports/partnering-primary-care-clinicians-improve-adherence/page/0/1
  2. Larsen-Barr, M. T. (2016). Experiencing antipsychotic medication: from first prescriptions to attempted discontinuation. University of Auckland, New Zealand.
  3. Harrow, M. H., & Jobe, T. H. (2007). Factors involved in outcome and recovery in schizophrenia patients not on antipsychotic medications: a 15-year multifollow-up study. Journal of Nervous & Mental Disease, 195(5), 406-414. doi:10.1097/01.nmd.0000253783.32338.6e
  4. Harrow, M. H., Jobe, T. H., & Faull, R. N. (2012). Do all schizophrenia patients need antipsychotic treatment continuously throughout their lifetime? A 20-year longitudinal study. Psychological Medicine, 42(10), 2145-2155. doi:10.1017/S0033291712000220
  5. Laengle, G., Bayer, W., Eschweiler, G., Jager, S., Pfiffner, C., Weiser, P., . . . Steinert, T. (2010). Effects of longterm treatment with atypical neuroleptics for patients with schizophrenia (ELAN): Medication use, adherence, functional impairment, quality of life. European Psychiatry, 25(1)
  6. Landolt, K., Rössler, W., Ajdacic-Gross, V., Derks, E. M., Libiger, J., Kahn, R. S., & Fleischhacker, W. W. (2016). Predictors of discontinuation of antipsychotic medication and subsequent outcomes in the European First Episode Schizophrenia Trial (EUFEST). Schizophrenia Research, In Press doi:10.1016/j.schres.2016.01.046
  7. Wils, R. S., Gotfredsen, D. R., Hjorthøj, C., Austin, S. F., Albert, N., Secher, R. G., . . . Nordentoft, M. (2017). Antipsychotic medication and remission of psychotic symptoms 10 years after a first- episode psychosis. Schizophrenia Research, 182, 42-48. doi:10.1016/j.schres.2016.10.030
  8. Wunderink, L., Nieboer, R. M., Wiersma, D., Sytema, S., & Nienhuis, F. J. (2013). Recovery in Remitted First-Episode Psychosis at 7 Years of Follow-up of an Early Dose Reduction/ Discontinuation or Maintenance Treatment Strategy: Long-term Follow-up of a 2-Year Randomized Clinical Trial. JAMA Psychiatry, 70(9), 913. doi:10.1001/jamapsychiatry.2013.19
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Miriam Larsen-Barr, DClinPsy
Miriam Larsen-Barr is a clinical psychologist who works with young people and their families in New Zealand. Her doctorate research explored experiences of taking, and attempting to stop, antipsychotic medication. Before training as a psychologist, Miriam worked within the service-user movement as part of a national project to reduce the stigma associated with mental health problems, where her greatest qualification was her lived experience of recovery.

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23 COMMENTS

  1. Miriam, Thank you for your excellent deconstruction of the mystification used by psychiatry. You. Point out that collaborative psychiatry is an oxymoron because of the power imbalance. As a person with lived experience who practices as a psychiatrist I practice emotional CPR and Open Dialogue to reduce this power imbalance, but it still exists. I acknowledge the imbalance but work with the person to realize their dreams with at times are to come off meds.

  2. I won’t have anything to do with these guys. They’re sure to regard my taking B3 a sign of untreated serious mental illness and try to compel me to consume zombie drugs again. I had a brief encounter with them decades ago, when the VA was busy failing to identify my caffeine sensitivity, and never renewed my script.

  3. Apparently collaborate is a synonym for conspire, and what the author calls “service user” is the subject this conspiracy revolves around.

    I would discourage people from “using” “services”. There should be a sign hanging from the wall of every “human services” building, or department, that says “user beware”.

    Conspire is a strong word. Too strong, perhaps. Perhaps the word I should be using for this collaboration against the “service user” is paternalism.

    The definition Google gives us for paternalism is “the policy or practice on the part of people in positions of authority of restricting the freedom and responsibilities of those subordinate to them in the subordinates’ supposed best interest.”

    I guess you can keep a good man (or woman) down. Especially if it’s your “job”.

    I’ve seen many articles on studies of the sort you are looking at. Thank you for drawing people’s attention to this “special report”. The puppet who is clever enough to play his or her puppeteers, should be clever enough to cut the strings.

  4. Ok, this is a good article. There are many good points. All of this supports the conclusion that psychiatry is coercion and force masquerading as medicine. I won’t use the term “slavery,” because the moderators will not let me use that term. But psychiatry has always been about coercion and force. The “medications” of which you write are not medications. They are toxic, brain altering chemicals. They are drugs. We don’t talk about PCP, LSD, cocaine or heroin as if they were “medications.” Furthermore, there is no such thing as “mental health,” just as there is no such thing as “mental illness.” These myths drive the psychiatric enterprise and are the engine for the therapeutic state. The last thing that is needed is to pour more money into the psycho-pharmaceutical industrial complex. The sooner that psychiatry is abolished, the sooner people begin to recover and to flourish. The sooner that the dragon of psychiatry is slain, the sooner peace and wellness will reign.

  5. The concept of using “CBT” to enforce “medication compliance” violates the most basic tenets of therapy. The therapist is supposed to form an alliance with the CLIENT, not to “collaborate” with the psychiatrist or the client’s parents to enforce their will! It shows just how far “therapy” has drifted from actually trying to help the clients to becoming a part of the oppressive system that creates “mental health issues” in the first place.

    • Steve McCrea, I am in total in agreement with you : using CBT in such a narrow and biased manner is a serious violation of fundamental ethics and shames the essence of psychotherapy. It’s the same thing as “using” any model of therapy to try to change sexual preferences in homosexuals as it is unethical to serve CIA and other torture prone groups …

  6. Thanks for writing about this. I practice and teach CBT, and I’m ashamed to have this kind of practice associated with CBT! It does violate some important principles, starting of course with the fact that CBT is supposed to be practiced by collaborating with the person receiving services, and with the aim of helping that person achieve that person’s goals, not the goals of the therapist or psychiatrist. It’s also supposed to be about helping people arrive at balanced thinking about a topic, which means exploring the positives and negatives of a given course of action – rather than deciding in advance what to promote!

    I think some professionals have become so convinced that the drugs are necessary, that they see any impulse to quit drugs as being completely irrational, and so they feel entitled to do whatever they can to get people to persist in taking them. As Noel Hunter pointed out recently, too many professionals spend way too little time considering that some of their own opinions may be wrong, irrational, etc.

    • Ron Unger, I feel shamed as you do. But I will admit to having often been tricked, “coerced” and persuades into serving the medical team more than patients in my 30 years of CBT practice. I hate to admit that YetanotherAccount is right about suspecting any therapist working within a mental health clinic. The biological twist is so prevalent and dominating, that most psychologists and even social workers, have to “join them cause we can’t beat them” ! Sad fact but raising conscience is no easy and quick process. I hope to live long enough to witness a real change …

      • When your job is on the line, it’s easy to change your beliefs accordingly. Notice how Choice Theory/Reality Therapy is not used for this? William Glasser believed coercion causes distress that commonly gets called mental illness. Accordingly, using therapy for this nonsense would make the victim worse–along with the drugs they were forced to take.

          • William Glasser awakened me to the fact that my “medicines” weren’t working and why. (The same as street drugs.) Some people with MI labels find this idea offensive.

            For me, it lifted a weight off my soul. For years I had felt guilty for not getting better. The therapists told me it was my fault for not using the boost the pills supposedly gave me. People kept yelling at me for getting worse, claiming I wasn’t “taking my meds.” My parents knew better, but say it o this day as a handy put down. If I told them I haven’t been “compliant” in two years they’d go into shock. 😀

      • My entrance into becoming a counselor was different than most – I participated as an activist with MindFreedom for many years before I went to graduate school and then started working in the field. So I already had an awareness of how corrupt things could be. And I had the good fortune to be hired by an agency that did counseling but not drugs, and had leaders skeptical of drugs (the first time I heard the DSM compared to the Malleus Maleficarum (the book used to “diagnose” witches) was in a presentation made by one of the leaders of this agency to all the staff.) So I haven’t had the kind of pressure you experienced. I did work for a few years just part time at the county mental health department, where there was pressure to fit in with the medical people – but I deliberately bucked the pressure and gave them a hard time, till they decided they didn’t need me working there anymore.

        In another post, Will Hall wrote about how we have to do something about corruption if we are ever going to have the big changes we need. Pressure on professionals to go along with faulty views if they want to keep their job is just another kind of corruption.

        • Absolutely right! In fact, “that’s the way, A hun, a hun, that’s the way” … corruption spreads. Just like cancer no ? And yes, it is very subtle, workers, bee them “professionals” have to put up with that pressure. Lucky you, even thou I wouldn’t have to have gone trough your harder times …But, at my time and place, I still had to pay the rent, bring in food, pay other bills. then the mortgage, tuition for my siblings, etc so, I guess I kinda put a lot, way too much in fact, water into my whine (is that expression comprehensible in english ? I wonder if it’s not just an idiom, the kind that is untranslatable ?). Kindest regards to you, a real CBT therapist.

  7. Dear Ms. Larsen-Barr:
    While I am in agreement that living medication free is most definitely preferable, it is not always a possibilty for some of us. I have experienced Recurrent Major Depression since age 17, with extreme suicidal ideation and attempts. It is a wonder that I’m still here at age 58. I made 3 major attempts to wean off my meds during those years: once with a Chinese M.D./acupuncturist and herbs; once with diet and an experienced Nutritionist and once with a Psychiatrist treating me. All attempts were sensible and gradual but all failed miserably. The 2nd & 3rd attempts caused me to lose housing and my car for 1 1/2 years, relationships with family & friends, incur thousands of dollars of debt and lose many of my valuable & sentimental belongings. To say it was a mess would be a severe understatement. I now take my meds each and every night for the past 5 years and will continue to do so unless some discovery is made on how to prevent “serotonergic reaction from antidepressants”. These are psychotic hallucinations that can occur in people on withdrawal from antidepressants. But don’t ask a psychiatrist or clinician to verify this reaction for you; they will just tell you “you are getting sick again”. A former Human Services Advocate colleague of mine, who also was an attorney, and with whom I sat on Advisory Boards in the County and NYS murdered his wife while in the midst of antidepressant withdrawal, as he thought “ISIS told him to do it”. Sadly, this was a woman he had actually loved very much; such is the power of serotonergic psychosis. Many of the horrific mass shootings we have heard about such as Columbine, Virginia Tech and other schools in recent years have been committed by teens undergoing withdrawal and/or treatment with antidepressants. In Europe and many other countries around the world, antidepressant use for teens has been completely banned. Tragically, not in the U.S. and the madness continues. I am glad you present the case of not getting dependent and/or weaning off of antidepressants (I sometimes warn people similarly), but do you comprehensively cover some of the issues I have addressed here? It seems few authors do and I find this irresponsible and disturbing. I’d like to hear what you have to say about this. Thank you.

  8. As a regular on this site I recommend How to Come off Psych Drugs:A Meeting of the Minds. A documentary by Daniel Mackler found free online. Also check out Peter Breggin’s website and Survivingantidepressants.com and The Icarus Project. They are offering a course here. The Continuing Education Course on Withdrawal from Psychiatric Drugs.

    Sadly, it’s a known fact, some people have been on these drugs long enough they can no longer function without small amounts. You may well be in this situation. Although I managed to go off mine I have developed a sort of pseudo-fibromyalgia after 25 years of Rx drug use.

      • Yes. They really should warn folks more about the risks here. I got after one zealot encouraging a guy who religiously believed in the MI system to “just come off those drugs.” I added that coming off cold turkey might cause extreme sickness (physical) and loss of contact with reality. I told the True Believer if he chose to come off psych drugs to be very careful and read up on it first. Or he might wind up institutionalized or dead.

        Hard to be drug free when the dealer poses as a doctor and says he wants to save your life, but you’re opposed to his kindness. When that doesn’t work he tells them your disease will kill them all if they don’t hold you down while he injects you with “medicine.”

    • Short and sweet ! Haha.

      I’ve been working with addicts for 30 something years and I never saw someone sign as “GettingOffTheDope” referring to Big pharma !

      But, in fact, they should be illegal if they where perceived as the way they are actually.

      What went wrong wit the the “war on drugs”, I wonder sometimes … Seems USA, and others, have just mis-identified the real enemy.

      Thanks for such a short but to the point post GOTP …