Designing a Patient that Acts Against Medical Advice

My research this summer was part of a large multifaceted community health project (focused on diabetes) that included teaching minority patients about shared decision-making — about how they shouldn’t be afraid to ask questions at the doctor, to even raise their objections to what the doctor is saying. Because by beginning and continuing that conversation, there is a better chance that patients and doctors will be able to develop a treatment plan that works, that the patients are likely to follow and thus, that is likely to lead to better health. So, I’ve been cheered whenever I see notes in the New York Times or elsewhere talking about shared decision-making. It brings me hope that perhaps our health care system is changing truly towards one that is not doctor-dominated or patient-dominated, but one where we work together to come up with a solution for better health.

Yet recently I read a piece by Dr. Jerome Groopman and Dr. Pamela Hartzbrand that made me wonder.The post is about “Susan,” a patient who has been healthy all her life and has been recommended by her doctor to take a statin for her high cholesterol. It describes the social context behind why she didn’t take it (she has a church acquaintance that developed muscle pain after taking statins and a father who refused statins but lived a long and healthy life). The piece also does an admirable job of spelling out the statistics of the costs and benefits of taking a statin:

[Based on her age and health profile] without treatment, Susan’s risk for a heart attack was 1 in 100. If 1 in 100 women has a heart attack, that means 2 in 200 do, or 3 in 300. The statin treatment reduces risk by 30%, or about one-third.

Thus, Susan weighs this benefit against the potential for side effects from the drug (1 in 10 could experience muscle pain), and she decides against taking the medication. This, the authors seem to suggest, is the desired outcome:

More than five years later, her doctor continues to encourage her to take the drug, and she continues to say no—but now, at least, she can more fully explain why.

Hooray for the informed patient! And yet, why is the doctor still pressuring Susan to take the statin if Susan supposedly made the correct and informed decision? It may simply be that the doctor is doing what he or she should and is revisiting the patient’s decisions regarding their health maintenance yearly because, naturally, these things change. Yet the language here of the doctor encouraging that Susan takes the drug suggests that according to medical decision-making, the doctor should be encouraging the patient to take the statin. But isn’t medical decision-making for the patient’s benefit as well? Or is it based on something else, like guidelines, which should be taking the patient’s preferences into account (but often don’t)?

I’m still several months from knowing anything of real use about clinical medicine besides what I read in articles like these and other commentaries from doctors and patients who have been there, so please take my words for the ignorance that they represent. Yet, I’m kind of flummoxed here. I don’t think this doctor is supposed to represent someone who has relations with the pharmaceutical companies that produce statins, and Jerome Groopman is also known for writing a book about medical decision-making, so I assume that’s influencing his account of the doctor’s behavior. Still, does this mean we should be revising what we think of medical decision-making and guidelines to respect patient preferences? and if so, why is that piece so sorely lacking in this account?