January 18th, 2015

“I’m Just Not a Pill Person”: Emotional Underpinnings of Nonadherence

The CardioExchange Editors interview Lisa Rosenbaum about her recent commentary on patients’ emotional responses to taking medications as a factor in nonadherence to therapy for heart disease. The article is published in the New England Journal of Medicine.

CardioExchange Editors: In the current model of healthcare delivery, care is fragmented into 15–20 minute clinic visits. Can the insight and education you propose be provided in this model? 

Lisa Rosenbaum: Unfortunately I think the answer is “No.” I think some of the challenges that seem specific to medication adherence are really just reflections of the more deeply embedded systemic challenges — namely, not having enough time with patients to really understand where they are coming from, and being beholden to certain quality metrics, which clearly help us keep up with a certain standard of care, but which also consume our attention and force us to deal with medications in a more perfunctory way. For some patients, this is fine; indeed, the straight march from guidelines to prescription to checking off the box can be comforting and expected. For others, however, there are emotional barriers, which are tough enough to overcome when we actually know they exist, but tougher still when we and our patients are not aware of them. My sense is that patients themselves are often unaware of what it is about medications for heart disease that puts them off, which is why it helps to have time to talk it out, and also why it’s often expressed under the generic guise of “not being a pill person.”

Given these constraints, what I really wish, though I fear it’s impossible, is that we could go back to the days where we had 15 minutes just to talk to patients about how they are doing. Face to face. In the office. No computers. That wouldn’t solve this problem, but it would begin to provide a foundation for conversations about people’s feelings about medications.

Editors: As you state, comments such as “I’ve never been a pill person,” and “I don’t like taking them, period” are common among patients. How can this attitude be changed and — well, should it be changed?

Rosenbaum: The “should it be changed” question is worthy of a book, so for the sake of argument, let’s just say the answer is yes. The question then is: how? As above, I think having more time with patients is necessary, but certainly not sufficient. The “good news” about the structural constraints that hamper free communication is that I’m not sure how relevant they are to the ultimate answer. Meaning, I think that the only real solution, almost by definition, has to come from patients rather than us. I thought about this a lot during the interviews I conducted — ok, great to know how people feel. But so what? During that time, I read the book Influence by Robert Cialdini, which describes in great and engaging detail much of the psychology research around social norm-setting. The bottom line is that much of our willingness to do anything is based upon our sense that others are doing it. That it’s cool. And so the question becomes, stated entirely informally: how could we make taking medications for heart disease feel more cool? Again, worthy of a book. But I definitely think there is something to be said for the idea of getting people together to support one another, emphasizing shared health over shared illness, and perhaps broadcasting medication-taking successes like one shares marathon-training stats. That said, there is no one-size-fits-all solution for general nonadherence to meds; solutions targeted at the emotions will need to be diverse. But I think any emotion-directed intervention will be more successful if it involves patients helping one another.

Editors: Why do you think many people are so interested in “natural” remedies, but so averse to taking evidence-based medicines — especially if they consider toxins such as tobacco and cocaine to be “natural”? How do you discuss this with patients?

Rosenbaum: This has baffled me for a long time. While I do not have an answer, I do know that my instinct —throwing more evidence and information at patients who feel this way — usually backfires. This gets back to the cool thing. It’s cool to walk down the street drinking a kale smoothie. It’s not cool to take a statin. If appealing to evidence is not effective than what is? My mentors and other creative investigators like Brendan Nyhan, who conducts some really amazing research on getting parents to vaccinate their children, are doing some remarkable work in this space. Not about the definition of “natural,” per se. But about how to get around some of our emotional quirks to help people adopt more healthy behaviors, like taking meds. I’m counting on that type of work to take us from believing the evidence ourselves to having an evidence-based approach for helping patients believe it.

Editors: Last year, a team led by Darrel Francis published results of their study on “medication disutility” in Circulation. What’s your response to this paper?

Rosenbaum: I think their fundamental point — that we can’t just assume disutility to be zero, and that therefore our cost-effectiveness analyses are likely flawed — is essential. For bringing some rigor to, and essentially providing a metric for, a concept that is often ignored, the paper is a tremendous contribution; in our world, having metrics and statistics really helps to get doctors thinking. A critical question is how to figure out who is “at risk” for nonadherence. While we know all kinds of factors that are associated with nonadherence, we really do not have a hard and fast way of identifying patients who might benefit from a targeted intervention to discourage nonadherence. So the disutility metric offers a path toward “at-risk” identification, which would be an invaluable tool. The study also seemed to confirm, albeit using a different methodology, what we already know: people do not like taking medications!

Perhaps this gets back to the philosophical question I can’t answer: if we do identify someone at risk for nonadherence, should we intervene? Assuming we should, then the disutility metric could be a useful gauge. But fundamentally, I think for some patients it’s simply not worth taking the pill, and we need to be ok with that. What worries me about a blanket acceptance of this decision is an underlying question: are there some reasons for not wanting to take meds that are more ok than others? Maybe someone’s aversion to taking a medication stems from hearing things about it that are not true. Is that a feeling we should try to change? Does it differ from the feeling of a person who completely understands the evidence-based 10 years of potential life gain but just can’t stand the thought of statin therapy? It’s so complicated!

Through grant support, I have had the luxury of time with patients in the last few years. And for that reason it’s easy for me to appreciate the value of this dynamic and what an informed choice really means. But I am certain if I had only 15 minutes with a patient I would “lapse” and just go back to my old way of handing them a prescription and saying “Take this so you don’t have another heart attack and live as long as possible…”

One Response to ““I’m Just Not a Pill Person”: Emotional Underpinnings of Nonadherence”

  1. Jean-Pierre Usdin, MD says:

    Great job! I was so happy to read your nice and interesting paper in NEJM.
    May I add my personal point of view?
    I believe Oncologists succeeded where cardiologists did not:
    I think of preventive measures and adherence to treatments.
    The dread of cancer is more important than fear of cardiac diseases
    I never heard of a patient coming to his own for a consultation with an oncologist but with cardiologist we see that every day.
    When the patient comes to us (cardiologist) he is sure that I will be treated gently or leaves the office with the message your heart is OK if not there is treatment for that and follow a good diet and regular exercise (and it is frequently the right way) and so long…see you in six month (or less or more)
    Cancer treatment tolerance to my knowledge is exactly the opposite (sorry for my colleagues) but the patient adherence is close to 100%.

    Why is the message given by cardiologists to weak about the disaster of cardiovascular diseases? Is it because patients (except for cerebral vascular accident) suppose that the heart kills suddenly? We hear this kind of thoughts so frequently!
    May be in our specialty we are more optimists considering the intense progresses these last 35 years (when I started)?
    I do not know, but the result is here: patients’ compliance to the cardiac treatment is low how to reverse that? Becoming depressed? I hope not
    Thank you again for your interesting work
    Warmly yours
    JP Usdin MD