Share and Share Alike -- Especially in Medical Decisions

By Eve Harris

Patients often make decisions about their medical treatment while sitting on an exam table in a thin cotton gown. But is this the best way to fully understand your options? Of course, some healthcare decisions are pretty easy. For example, if the treatment being offered is easy to use or has a long history of success with only mild side effects.

But overall, health care decisions are becoming more complex. Your doctor may offer more than one alternative. Picking among those alternatives may have as much to do with medical evidence as your own preferences. The process known as shared decision making empowers patients to collaborate with their doctors in choosing a treatment, as opposed to the doctor pointing a patient toward one choice.

It all has to do with risks and benefits. In a shared decision process doctors put more effort into explaining trade-offs, and patients must think more deeply about what matters most to them. The relationship of shared decision making to better health is still being studied, but we know that patients who are involved in making their own medical decisions often have less anxiety and recover more quickly.

Patient advocates embrace this approach and doctors increasingly see the importance of collaboration, too. “We have an ethical duty to inform our patients what their options are and get their preferences,” Dr. Win May told me. May is a professor at USC’s Keck School of Medicine. “Even with surgical interventions,” she said, “one can always ask ‘can we wait?’”

Case in point: Marcy Baskin. She’s 60 and two years ago was suffering “excruciating” arthritis pain. But despite the pain, she took several months to decide on surgery to replace her arthritic ankle with a prosthesis.

Baskin is a yoga practitioner and former personal trainer who values her active lifestyle. She lives in rural Sonoma County with a horse, some chickens, her husband and close family nearby.

She met several times face to face with her surgeon and sent “at least a dozen” emails, she told me. Even after the surgeon answered her emails and told her that 85 percent of patients recover well, Baskin feared a bad outcome. She talked with her husband and sister, because “that’s the nature of my family, we talk about stuff like that.” Now 16 months post-op, she is confident she made the right choice in the right way. “I’m engaged in every other decision in my life, why not with my body?”

Best-selling author Dr. Jerome Groopman told Fresh Air’s Terry Gross, “It's very important for people to understand how the (medical) information applies to them as individuals and then to understand ... their own personal approach to making choices ... so that they're confident that what they chose is right for them."

Groopman and co-author Dr. Pamela Hartzband explain in their book “Your Medical Mind” how our varied personalities affect our decision making. Some people, for example, need to hear about the experiences of other patients in order to truly understand how the treatment (or lack of treatment) will feel. Patients increasingly are reaching out through social media to others with similar diagnoses, hoping to find information or help .

Even if most patients now want more information, and many want greater involvement in decision making, there is a gap. Dr. May says that underrepresented minority patients and those of lower socioeconomic status ask fewer questions.  But she insists there is a way to involve practically any patient. “We know that when people have low self esteem they defer (to the provider) but the provider can encourage them.”

A small 2007 study from UCLA demonstrated a way to reduce one such disparity. African Americans suffering arthritis pain have knee replacement surgery significantly less often than Caucasians. This treatment disparity has been linked to a difference in knowledge and expectations of the surgery. Many more African Americans say they expect pain and decreased mobility to continue after recovery from the operation. In the UCLA study, researchers leveled the playing field by showing an educational video during small group meetings. Afterward, expectation of a poor outcome fell among African Americans. All attendees showed the same understanding about the risk and benefit of knee replacement.

Moving patients toward greater responsibility overall for their health will take time. May said “There are cultural issues we need to solve -- that’s what we all aspire to.”

Eve Harris is a Bay Area health writer. Check out her blog, A Healthy Piece of My Mind.