Some patients fear speaking up will upset their doctors

Even well-educated, well-to-do patients have trouble asking their physicians questions about treatment options or expressing their medical preferences and values, said a study drawing on focus groups with older adults in the San Francisco Bay Area.

Clear themes emerged from six focus group sessions with 48 patients in Palo Alto, Calif., the study said. Patients said they wanted to have a more active role in making medical decisions with their physicians, but feared upsetting them. The patients, all of whom were 40 or older, said they did not feel as though their physicians listened to or respected what they had to say.

Many patients worried that questioning their physician’s recommendations could hurt the doctor-patient relationship.

“If I were to do that, I would think & is the guy going to be & [angry] at me for not doing what he wanted?” asked a 64-year-old man quoted in the study. “Is it going to come out in some other way that’s going to lower the quality of my treatment? & Will he do what I want but & resent it and therefore not quite be as good?”

The findings are especially striking because nearly all of the patients in the focus groups had at least some college education. Previous research has found an association between a patient’s education level and the likelihood of a more collaborative approach to medical decision-making. About 40% of the patients had an annual income of $100,000 or more, and only 2% had an income level near the U.S. poverty line of $11,344, said the study, published in May’s Health Affairs (link).

“Many, if not most, physicians are probably not aware of these patient perceptions,” said Dominick L. Frosch, PhD, lead author of the study. “Our purpose in the paper is to make physicians aware of these issues so they can attend to them. When there is openness and patients feel safe to express their opinions and ask questions, ultimately it will lead to better decisions and to therapies being selected that patients are willing to adhere to.”

For medical decisions to choose a given therapy to be informed, physician-patient discussions should cover the nature of the intervention, benefits and risks, alternatives, uncertainties, assess patient understanding and explore patient preferences, according to an influential study in the Dec. 22/29, 1999, issue of The Journal of the American Medical Association (link). Researchers audiotaped more than 1,000 patient encounters with 124 physicians covering 3,552 clinical decisions for the JAMA study. Less than 10% of the discussions covered met all the criteria for informed medical decision-making.

Patients feel time constraints

In the focus groups conducted for the Health Affairs study, many patients said they felt self-conscious about taking up too much time with their questions. Many reported doing research outside the physician’s office to familiarize themselves with their options and bringing relatives to the exam room to help them talk with their doctors.

A follow-up survey with a larger sample of adults will further explore patients’ perceived barriers in communicating with their physicians, said Frosch, associate investigator in the Dept. of Health Services Research at the Palo Alto Medical Foundation Research Institute.

Paying physicians adequately to engage in what is called shared decision-making “is an important first step” to ensuring that it happens regularly, the study said. Clinical decision aids on options for back care, chronic conditions, screening tests and more are available from organizations such as the Boston-based Informed Medical Decisions Foundation (link).

Some patients may be happy to let their physicians take the lead and make the hard calls, but it remains important for doctors to encourage patients to ask questions and clarify their preferences, Frosch said.

“Be explicit with patients,” he said. “Tell them: ‘We want to know what you think, and this is a safe place for you to tell me. Because if you don’t, we may end up with a treatment you’re not able to follow up with. And that’s not in either of our interests.’ ”