Palo Alto Medical Foundation Newsroom

Patients’ Fear of Being Labeled “Difficult” a Barrier to Shared Decision-Making

Shared decision-making is an approach to patient centered care that was featured prominently in the Affordable Care Act as a way to give patients a greater voice in making decisions about their health care. A new study finds that some patients are concerned about being labeled “difficult” if they ask too many questions or disagree with a recommendation from their physician and worry that this could result in receiving lower quality care in the future.

The study, conducted by researchers at the Palo Alto Medical Foundation Research Institute and the Dartmouth Center for Health Care Delivery Science, was published in the May issue of Health Affairs. It identifies important barriers to shared decision-making that have received little attention to date.

“We found that patients want to participate in making decisions with their physicians, but feel vulnerable and worried that they might be perceived as too assertive, resulting in lower quality care in the future,” said Dominick Frosch, Ph.D., lead author of the study.

Many health problems have multiple options for how they can be treated, but often no single best choice can be identified from the medical evidence. Ideally, patients should play a key role in making these preference-sensitive decisions to ensure that the therapeutic approach chosen is one that fits with an individual’s preferences for risks and benefits. Shared decision-making is a collaborative process that allows patients and their healthcare providers to make health care treatment decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences.

With a grant from the Informed Medical Decisions Foundation, Frosch and colleagues conducted six focus group interviews with patients to learn more about how they perceived communicating with physicians about medical decisions. Study participants were recruited in Palo Alto, an affluent city in the San Francisco Bay Area. Most were Caucasian, highly educated and had above average incomes.

“Although our study doesn’t allow us to draw conclusions about how common these concerns are, it is difficult to imagine that people who are less well-off would not share these concerns,” said Frosch.

Questioning a physician’s advice or recommendations was perceived by participants as a challenge to authority that most wanted to avoid, for fear of “displeasing” or “disappointing” their physician. Many participants also felt that their physicians perpetuated this authoritarian stereotype. To cope with this, participants described doing their own research about treatment options and bringing social support to medical consultations to make the best use of the limited time available. According to Frosch “participants wanted their physician to be an equal partner in making decisions, but did not feel they could rely on them to help them understand treatment options.”

Previous studies have found that lack of physician reimbursement for shared decision-making is a significant barrier, but findings from this study suggest that more needs to be done to increase patient-centered care.

“Most physicians are probably not aware that patients are concerned about asserting their preferences in a medical consultation,” Frosch said. “Our study suggests that health care providers need to be explicit with patients that their opinion matters and that it’s okay to disagree, otherwise the treatment that is prescribed may not be one the patient is willing to adhere to.”

Frosch’s team, including Glyn Elwyn now at the Dartmouth Center for Health  Care Delivery Science, advocates for new measures of health care quality that capture the degree to which decisions made reflect patients’ informed preferences.

His team has also received a new grant from the Patient-Centered Outcomes Research Institute (PCORI) to develop an intervention that will help health care providers explicitly indicate to patients that their opinions are important and welcome in the process of making decisions about their care.

“Medical consultations should be a place where patients can feel safe about being open with their concerns and opinions. Otherwise, we really can’t call it patient centered care,” noted Frosch.

The Palo Alto Medical Foundation’s Chief Operating Officer James Hereford strongly endorses Frosch’s field of research.

“Since 2009, we have enthusiastically supported Dr. Frosch’s research in shared medical decision making at PAMF, and now we are implementing simple but effective ways to promote this patient centered care model.”Hereford reported that the medical foundation has already embarked on a comprehensive redesign of primary care workflows with the dual goals of improving efficiency and increasing patient centeredness. Interventions to increase shared decision-making fit well with this vision for health care delivery.

About the Palo Alto Medical Foundation and Sutter Health

The Palo Alto Medical Foundation (PAMF) for Health Care, Research and Education is a not-for-profit health care organization that is a pioneer in the multispecialty group practice of medicine. Founded in 1930, PAMF is part of the Peninsula Coastal Region of Sutter Health, one of the nation’s leading not-for-profit networks of community-based health care providers. Sutter Health’s Peninsula Coastal Region also includes Mills-Peninsula Health Services. PAMF’s 1,000 affiliated physicians and 4,900 employees serve nearly 730,000 patients at its medical centers and clinics in Alameda, San Mateo, Santa Clara and Santa Cruz counties.

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