An Open Call to Talk Frankly about Adherence

Sue Bergeson Health Guide
  • Whenever two or more psychiatrists are gathered together...they complain about treatment adherence. What is adherence? It's the extent to which consumers stay on a treatment plan or take a medication routinely. It seems I cannot be in a meeting of psychiatrists, psychologists, psychiatric nurses or pharmaceutical company representatives without the conversation moving to the topic of the "problem with adherence." But they don't call it adherence...they call it compliance.


    And that is my first problem. Compliance is a power word. My dog "complies" with my orders, especially when she has been bad. She has nothing to say about it; she simply must obey. The word compliance has no place in the lexicon of a mental health community that says it's seeking patient-centered care and a therapeutic alliance. If you're looking for compliance, you're not working with a patient-centered attitude; you're not using joint decision making. You may say you are, but you betray your actual intent by using a word that harkens back to the 1950s doctor-as-God model.

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    My second problem is that, when people in mental health circles talk about the "problem of adherence," they act as if this problem is unique to mental health consumers or, if not unique, just much, much worse. But this isn't the case. In fact, according to landmark research done by the World Health Organization (WHO), "[a]dherence to long-term therapy for chronic illnesses in developed countries averages 50%." That's all chronic illnesses including diabetes, HIV, asthma, etc.-not just depression or bipolar disorder.

    My third problem with the adherence issue is that many doctors don't provide measurement-based care to achieve better treatment outcomes for us the consumers. Improvements in our lives (however small), or at least our symptoms, that are based on some measureable result would make us more hopeful...more motivated to show up for our 10-minute psychiatrist appointment every three months, to tolerate a medication's unpleasant side effects, to stick with a treatment plan that might be slow-going at first.

    My fourth problem with the conversation about adherence is summarized by this statement from WHO's research: "Despite evidence to the contrary, there continues to be a tendency to focus on patient-related factors as the causes of problems with adherence, to the relative neglect of provider and health system-related determinants. These latter factors, which make up the health care environment in which patients receive care, have a major effect on adherence. Patients need to be supported, not blamed."


    In other words, "It's the system, dummy, not the patient." If doctors don't take the time to educate us, their patients—or even more importantly, include medication in a treatment plan that is relevant to our lives and our concerns—how can we be blamed for not "adhering" to their treatment?


    The biggest problem I have, though, with the concept of adherence is the mindset that many prescribers have towards medication. For most prescribers, the point of treatment is the medication. The medication leads to a change in symptoms that might be (although it's usually not) measured. But, for most consumers, the point of treatment is their life. The medication is a means to an end, an outcome they're seeking—not a reduction of symptoms but the creation of something...a full life. 


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    If medication is seen as a means to an end (the end being defined by the consumer with the provider), then adherence to treatment—the means to the end—makes sense. In other words, if the only thing I care about—the only thing I can allow myself to hope for or think about—is my dog, then the provider better be setting up a treatment plan that allows me to give my dog a better life. And, by the way, taking a medication is one means to the end of giving my dog a better life...because when I can do that, I have more energy to take her for walks ... I'm more likely to remember to take her to the vet...I'll have money from a job to buy her food...and so on.


    Let me say this again. The point of treatment is to give consumers a better life—a life we define based on what we care about. Medication is a means to an end—our better life. Our conversations with our doctor must address the end we're seeking in terms of that better life. It should focus on medication as a means to that end, not the end in and of itself. If that happens, then I believe "adherence to the medication" also happens.


    I'm tired of listening to those providers who blame consumers for not "complying with medication." They need to understand what we need: real and meaningful education so that we understand our treatment (instead of a minute or two of a 12-minute session) as well as measurement-based care that allows both parties to see some real improvement ... i.e., treatment that's focused on our life rather than our medication. And, as the World Health Organization suggests, we need both providers and the health care system to consider the roles they themselves play in the "adherence problem" ... and do something about them.


    What are some ways you think providers can provide more real and meaningful education to consumers?

Published On: May 14, 2008