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?
- 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 ↩
- Larsen-Barr, M. T. (2016). Experiencing antipsychotic medication: from first prescriptions to attempted discontinuation. University of Auckland, New Zealand. ↩
- 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 ↩
- 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 ↩
- 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) ↩
- 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 ↩
- 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 ↩
- 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 ↩