Thomas Barwick/Getty Images A friend of mine, a brilliant and accomplished academic in her 70s who once specialized in history and literature, recently phoned to ask for medical advice after being discharged from the hospital for what sounded like a mini-stroke. Ever eager to learn something new, she pressed me on “the latest research” and asked what doctors around the country were doing for her condition.
We discussed a few research studies, diagnostic tests and treatment options, but when I suggested she speak with her primary care doctor and perhaps a neurologist, her end of the line went silent. I wondered if my cellphone had dropped the connection or, for a single harrowing second, if my friend was having another strokelike event.
When she finally spoke again, her once-confident voice sounded nearly childlike. “I don’t really feel comfortable bringing it up,” she said. While her doctor was generally warm and caring, “he seems too busy and uninterested in what I feel or want to say.”
“I don’t want him to think I’m questioning his judgment,” she added. “I don’t want to upset him or make him angry at me!”
For over a generation now, efforts to make health care more patient-friendly have focused on getting patients and doctors to work together to make decisions about care and treatment. Numerous research papers, conferences and advocacy organizations have been devoted to this topic of “shared decision-making,” and even politicians have clambered aboard the train, devoting several provisions in the Affordable Care Act to “preference-sensitive care.”
But one thing has been missing in nearly all of these earnest efforts to encourage doctors to share the decision-making process. That is, ironically, the patient’s perspective.
Now a study published in the most recent issue of Health Affairs has begun to uncover some of that perspective, and the news is not good. In our enthusiasm for all things patient-centered, we seem to have, as the saying goes, taken the thought of including patient preferences for the deed.
The researchers conducted several focus groups with 48 patients from five primary care physicians in the San Francisco Bay area. First, they showed the patient participants a short video on several equally effective but very different treatment approaches for a heart ailment. Then, they asked them questions about what they did with their own doctors when faced with a choice among several treatment options that might be equally effective but could differ in lifestyle effects, cost or range of complications. Finally, the researchers asked the participants if they were comfortable asking doctors about different treatments, discussing their values and preferences or disagreeing with their doctors’ recommendations.
The participants responded that they felt limited, almost trapped into certain ways of speaking with their doctors. They said they wanted to collaborate in decisions about their care but felt they couldn’t because doctors often acted authoritarian, rather than authoritative. A large number worried about upsetting or angering their doctors and believed that they were best served by acting as “supplicants” toward the doctor “who knows best.” Many also believed that they could depend only on themselves for getting more information about treatments or diseases. Some even said they feared retribution by doctors who could ultimately affect their care and how they did.
The findings fly in the face of previous optimistic assumptions about shared decision-making that were based mostly on studies that examined physicians’ intent, but not patient perceptions. “Many physicians say they are already doing shared decision-making,” said Dominick L. Frosch, lead author of the new study and an associate investigator in the Department of Health Services Research at the Palo Alto Medical Foundation Research Institute in California. “But patients still aren’t perceiving the relationship as a partnership.”
Interestingly, most participants in this study were over 50, lived in affluent areas and had either attended or completed graduate school. “It’s hard to think that people from more disadvantaged backgrounds would find it any easier to question doctors,” Dr. Frosch said.
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While understanding health care issues and making themselves heard in discussions were not difficult in general for the participants in the study, the skills and confidence they had in other settings appeared to have little relevance once they were in their doctors’ offices. They could not speak as easily as they normally did. “People experience a different sense of self in the doctor-patient interaction,” Dr. Frosch observed. “The clinical context creates a reluctance to be more assertive.”
Dr. Frosch and his colleagues are working on a larger study examining the extent to which patients feel constrained. And they have plans to study whether there are better ways to encourage patient engagement.
Systemic changes to increase shared decision-making must be addressed as well. Care organizations and doctors’ practices must be restructured to allow more in-depth conversations; clinicians need to be reimbursed for the time required for more meaningful conversations; and health care systems must adopt rigorous quality standards that measure and value real patient engagement in decisions.
“We urgently need support of shared decision-making that is more than just rhetoric,” Dr. Frosch said. “It may take a little longer to talk through decisions and disagreements; but if we empower patients to make informed choices, we will all do much better in the long run.”
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