Three years ago, Lorraine Howell of Seattle went to her doctor complaining about her right knee. Her physician diagnosed a slight cartilage tear and the onset of arthritis. "He told me my knee was wearing out,'" says Howell, who was handed a booklet on treatments for knee osteoarthritis, prescribed a DVD on the topic and referred to an orthopedic surgeon. The materials detailed all her treatment options—non-surgical treatments, such as physical therapy, pain medicines and lifestyle changes, and surgical options including partial- and full knee replacements. "They helped prepare me" for the surgeon's visit, Howell, a communications professional, says.
"What happened next surprised me," says Howell, 66, a Group Health Cooperative member. Her surgeon discussed her treatment options with her, and then told her that the choice was hers to make. "I went in expecting he would recommend surgery," she says. At the visit's end, the surgeon mentioned, "for each pound you take off, you lessen knee pressure by three to four times," notes Howell, who weighed more than 200 pounds at the time. "It was almost a throwaway, but it caught my attention."
Over the next two years, Howell lost 60 pounds. "Today, I'm in much better shape than when this all started," says Howell, who this summer enjoyed a five-day biking and kayaking trip around the picturesque San Juan Islands and climbed 2,409-foot Mount Constitution. "I take anti-inflammatories and keep my weight down. I'm trying to keep my original equipment as long as possible."
Howell and other patients at Group Health who are diagnosed with a condition absent a clear-cut course of treatment—as many as half or more of all care falls into this category—are treated in this way.
Welcome to shared decision making, a very basic concept in which patients and providers make health care decisions jointly, accounting for medical evidence of a treatment while considering a patient's preferences and values. The process typically is primed first with patients like Howell getting clear, unbiased information about a medical condition, along with the risks and benefits of each treatment. That way, a patient is more informed, can have a more productive discussion with a doctor and can make decisions based on her own personal values.
Patient engagement has been dubbed by some experts as the next "blockbuster drug," and shared decision making is seen as the pinnacle of engaging and informing patients. "It is perfected informed consent," says Ben Moulton, senior legal advisor with Boston's Informed Medical Decisions Foundation. Research shows big benefits in the approach, yet shared decision making rarely occurs today. Maine, Massachusetts and Minnesota are among a handful of states that have urged or advanced shared decision making, and in 2007 Washington State enacted a law requiring it, but even though the Affordable Care Act aims to boost shared decision making, those provisions in the health care law have largely been gone unfunded.
Instinctively, educating and getting patients involved in making decisions about their own treatment options seems like common sense. Research also backs it up: The approach has been shown to boost patients' knowledge, improve treatment expectations, reduce decision-making uncertainty, and help patients reach more comfortable decisions.
The largest study of its kind, reported in Health Affairs last year, showed that the introduction of decision aides for hip and knee osteoarthritis at Group Health was linked to 26 percent and 38 percent drops in hip replacement and knee replacement surgeries, respectively. It wasn't just Howell who opted for a more conservative approach. The New England Journal of Medicine reported that 20 percent of patients participating in shared decision making opted for less-invasive surgical options and more conservative treatments.
Writing in the Journal earlier this year, Emily Oshima Lee, a policy analyst at the Center for American Progress, and Ezekiel Emanuel, chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania, posited that, "Shared decision making has the potential to provide numerous benefits for patients, clinicians, and the health care system, including increased patient knowledge, less anxiety over the care process, improved health outcomes, reductions in unwarranted variation in care and costs, and greater alignment of care with patients' values."