Does Fear of Being Labeled "Difficult" Prevent Patients from Expressing Themselves to Doctors?

Jun 4, 2012, 1:00 PM, Posted by

Dominick L. Frosch, PhD, is an alumnus of the Robert Wood Johnson Foundation (RWJF) Health & Society Scholars program, and the recipient of an RWJF Investigator Award in Health Policy Research. He is an associate investigator at the Department of Health Services Research at the Palo Alto Medical Foundation Research Institute, and associate professor of medicine at the University of California, Los Angeles. Frosch recently led a study, published in Health Affairs, which examined the reasons patients are reluctant to engage in shared decision making. This post is part of a series on the RWJF Health & Society Scholars program, running in conjunction with the program’s tenth anniversary. The RWJF Health & Society Scholars program is designed to build the nation’s capacity for research, leadership and policy change to address the multiple determinants of population health.

Human Capital Blog: Why did you decide to look at this issue?

Dominick Frosch: The role of patients is really changing and, especially over the last decade, we’ve seen a growing emphasis on patient participation in clinical decision making. It’s especially prominent in what we call preference-sensitive care, where patients have multiple potential options for treatment, but the evidence doesn’t identify a clear, superior choice. Making a decision in these cases involves considering the trade-offs between benefits and risks. There’s growing emphasis that patients should have a role to play in these preference-sensitive situations because they have to live with the outcomes of the care they receive.

Until now, we have implicitly assumed that providing patients with information is sufficient to facilitate shared decision making. In reality we know quite little about how patients perceive the communication tasks that are necessary for shared decision making to happen in a clinical consultation, and our objective with this study was to develop a better understanding of that.

HCB: You conducted six focus groups, with 48 patients, to better understand how they felt about obstacles to shared decision making. Tell us what you found.

Frosch: Patients absolutely want to collaborate with their physicians in making clinical decisions, but their ability to do so depends on their physicians. They described a sense of needing to adopt the role of a “good patient,” and felt that questioning their physician implied questioning their expertise or challenging their authority. They didn’t want to foster any resentment that could lead to them getting lower quality care in the future. We don’t know if any of these things have actually happened to the focus group participants, but they were common fears they described. They worried that if they were viewed as assertive and questioning, they’d be dismissed or labeled as “difficult.”

Our participants also described adopting deferential positions to avoid displeasing or disappointing their physicians. They felt they weren’t respected or heard, and that their physicians were authoritarian, rather than authoritative, exercising control over what would happen and limiting patients’ role in making a choice. Patients want their physicians to be their guide and navigator, but they also want some control over the choices they make about their care.

HCB: Are these fears common among patients, or did you see any differences by demographic characteristic or population?

Frosch: There are some important caveats to our study. It’s a qualitative study—we can’t say anything about how common these perceptions are among the broader public or draw conclusions about how prevalent these concerns are. But our focus groups were mostly with Caucasians, with fairly high levels of education and income. If these people are describing these challenges they commonly face, it’s difficult for us to imagine that people in a less privileged position would find it any easier to engage in dialogue with their providers.

These challenges felt by patients have been depicted in popular culture—in a Seinfeld episode—and when I’ve presented these findings at meetings or talked informally about these results with people, many can relate to these experiences on a personal level.

HCB: Why is shared decision making important? Why is it important for patients to voice their concerns and collaborate with physicians?

Frosch: One reason it’s important to get patients involved is that it’s been demonstrated that informed patients make different decisions than uninformed patients. For instance, informed patients tend to want less aggressive care and have fewer elective surgeries. Another aspect is in the context of chronic disease management. Research has documented that patients who are more involved in their care choices are more likely to end up with a regimen and treatment plan they’re going to adhere to. If they’ve agreed to it, they’re more likely to follow through with it. We need more evidence to flesh this out further, but there’s reason to believe if patients are more involved in making care decisions, their long-term outcomes will improve.

HCB: What do you hope happens from here?

Frosch: From our point of view, the first issue is that many physicians probably don’t realize how patients perceive their experience in consultations. We hope this study will raise awareness of that. Ideally what should be happening is that patients are explicitly given permission to ask questions. It should be made clear that if a patient disagrees with a recommendation the physician wants to know about it, and patients should feel safe talking about these issues. Then the physician and patient can have a discussion about other options that are more agreeable, or the physician can help the patient understand why a particular therapy would be valuable. I think more training of providers in shared decision making communication is clearly needed.

Many providers feel they don’t have time to engage patients, especially in a fee-for-service model where they are encouraged to create billing opportunities and make decisions quickly. Support and resources are available that can prepare patients for more focused and productive consultations, and as the health care system changes, attention needs to be paid to identifying patients’ information needs so that during consultations, patients and providers can discuss this information. We also need quality measures that capture the degree to which care provided reflects informed patient preferences.

Read a post from the New York Times Well blog about Frosch’s study.

Learn more about the RWJF Health & Society Scholars program.

This commentary originally appeared on the RWJF Human Capital Blog. The views and opinions expressed here are those of the authors.