While our dad was in the hospital last winter, my brother shared with me his strategy for talking to the doctors we encountered – an approach honed over ten years of marriage to an internist and dozens of pediatrician visits for his two little boys. He asked smart questions that used medical terms to earn their respect, he told me. He was appropriately deferential, admitting his lack of clinical experience. If he disagreed, he gently offered empirical evidence to support his argument and then hoped that the doctor listened and didn’t get defensive.
That’s a tall order, even for the savviest of patients.
I’ve written before about shared decision making: the idea that for medical decisions in which there is no clear right or wrong answer, doctors and patients should collaborate on choosing a path that best fits the patient’s preferences. The success of this approach rests on the ability of patient and doctor to have a frank conversation. But this has been historically difficult and a study that was published last week in the Archives of Internal Medicine helps explain why.
California-based researchers surveyed 1340 adult patients about a hypothetical scenario of deciding on a treatment for heart disease. Almost all of them reported that they’d be comfortable asking their doctors questions about the options (93%) and stating their preferences (94%). Good news so far. But only 14% said they would tell their doctors if their preferences clashed with the doctor’s advice – not because they couldn’t express this disagreement, the survey results suggested, but because they felt it was socially unacceptable to do so and wouldn’t end well. Many feared being seen as a difficult patient; others worried that they would hurt the doctor-patient relationship or would get in the way of their care.
The part that most struck me was that factors like age, income and education level didn’t predict a patient’s willingness to disagree (neither, for the record, did the existence of true heart disease, extent of their medical issues, or race). The only predictor of voiced disagreement was a general preference for making one’s own medical decisions.
In the clinic where I practice, most patients are Massachusetts General Hospital employees. While their jobs range from cashier to cardiologist, their education levels and health literacy tend to be above average. Yet, I’ve seen many of my patients fall into the same traps described in the study. Though they often have the background to say “I’m sorry, I don’t mean to be a difficult patient,” they still worry about being one.
It’s an important reminder to myself and other doctors to make room for disagreement: To ask, explicitly, what is your preference? And then to say, explicitly, it’s truly up to you.
What have your experiences been? How do you make your preferences known, especially when they are at odds with your doctor’s recommendations?
Ishani Ganguli is a journalist and an internal medicine-primary care resident who blogs at The Boston Globe’s Short White Coat, where this article originally appeared.
