Why engaging patients in the process is key to succeeding under value-based care.
It’s been a long time since patients universally viewed their physicians as infallible and having the sole say in medical decisions.
The availability of medical information online, news of medical errors and malpractice and the emphasis on controlling healthcare costs have led to more patient involvement in medical decisions. For physicians, the growth in shared decision making has been driven by evidence that it leads to better care and a push by the medical establishment.
Though it’s getting more attention now, shared decision making is not new. In 1982, a presidential commission declared that practicing ethical medicine required giving patients the necessary information to form their own opinions and have those opinions taken into account in the ultimate treatment decision.
Yet in the 34 years since, study after study has found that shared decision making is not always used when it should be and, when it is employed, is often done imperfectly and unevenly. “How Patient-Centered are Medical Decisions?”, a study published in JAMA in 2013, asked patients to describe the decision-making process for 10 common medical decisions, including six most often made in primary care.
Respondents reported much more discussion of the pros than the cons of tests or treatments, although discussions about surgical procedures tended to be more balanced than those concerning medications to reduce cardiac risks and cancer screening. Decisions about back or knee replacement surgery generated the most patient-centered discussions; breast and prostate cancer screening the least.
“Discussions about these common tests, medications, and procedures . . . do not reflect a high level of shared decision making, particularly for five decisions most often made in primary care,” the authors concluded.
Perhaps it shouldn’t be surprising that shared decision making isn’t used more widely. It requires additional time and effort on the part of everyone involved, educating patients in complicated matters and a shift in the traditional relationship between patients and physicians.
The Informed Medical Decisions Foundation (IMDF), which studies and advocates for shared decision making, says it should be used “when it comes to preference-sensitive care, where there is more than one clinically appropriate treatment option for the condition, each with benefits and drawbacks, and in which the patient’s values and preferences should be critical in determining the chosen intervention.”
So a pneumonia vaccine or stitching up a cut don’t require shared decision making, but many other primary care decisions do, including some that doctors used to make with little or no input from patients.
“Many times there are situations where there are tradeoffs between doing a test and not doing a test, doing a treatment or not doing a treatment. And the tradeoff is something I can’t accurately assess until I know what’s important to the patient,” says Leigh Simmons, MD, an internist at Massachusetts General Hospital and medical director of the Boston hospital’s Health Decision Sciences Center.
“It’s a recognition on the part of the medical profession that we have to be really honest with ourselves and with our patients about how much we can help them and try not to put them at risk,” Simmons says.
Proponents say it leads to more considered decisions, happier and more engaged patients and lower overall costs, arguments that seem to be supported by studies, though the many variables involved make it a difficult subject to examine.
Ishani Ganguli, MD, a primary care physician with Ambulatory Practice of the Future in Boston, Massachusetts, says she finds that patients are more willing to adhere to a treatment plan if they’ve had a part in shaping it. That could be because they’re also more likely to help devise a plan that fits into their lives, she says.
“There are challenges to implementing shared decision making for sure, but it’s one of those rare things that you can argue positively affects all three targets of better healthcare: improving the patient experience, improving health and lowering healthcare costs,” she says.
There doesn’t appear to be any evidence showing that shared decision making leads to more positive clinical outcomes, but a happier, more informed patient should count toward that, says Summer Allen, MD, a primary care physician at the Mayo Clinic in Rochester, Minnesota.
Other desirable outcomes include better rapport between patients and physicians, including other doctors the patient will see, and increased patient safety because shared decision making is likely to lead to fewer surgical procedures.
Some physicians might argue that they already explain treatments to their patients and ask their opinions. But that’s not shared decision making, says Jack Fowler, Ph.D., senior scientific adviser at IMDF. Shared decision making is a more rigorous process that takes training and commitment to succeed, he says. And it requires the use of decision aids, resources that inform patients of the benefits and drawbacks of healthcare options and helps guide them to decisions.
The first thing practices should do is get trained, Fowler says. The more primary care doctors know about the benefits of shared decision making and how to use it, the more likely they are to employ it. Many organizations provide training and resources, including IMDF, Mayo Clinic’s Shared Decision Making National Resource Center and the Center for Informed Choice at The Dartmouth Institute.
Simmons, who trains primary care practices affiliated with Massachusetts General, says successful implementation of shared decision making requires a clinical champion to push for it and a familiarity with how decision aids work. She found in her training that physicians often had misconceptions about the aids. “There was concern that they didn’t know the content or that it might be radical or they thought it would discourage patients from having any sort of screening or treatment,” she says.
Physicians sharing stories of successful outcomes with patients and even fostering gentle competition among doctors in the practice also helps, Simmons says.
Documenting the shared decisions is important for guarding against future liability, she says, adding that physicians should revisit the decisions with patients every year because testing methods, conditions and patients’ minds can all change.
Shared decision making is more easily endorsed than implemented. Not every physician thinks it’s necessary to fully inform patients or give them a voice in medical decisions.
“We have lots of barriers from doctors. Some of them just don’t buy into it,” Fowler says, citing the most common physician objections as lack of time, concern that their patients won’t like it, unhappiness with the decision aids and the belief that they’re already using it.
But sometimes patients are the obstacle. They can be reluctant to engage in decision making with their doctors or they might prefer to have their physicians make the calls. A 2009 study from the Palo Alto Medical Foundation Research Institute, published in Health Affairs, found that even well-educated and affluent patients feel compelled to conform to traditional doctor-patient roles and defer to physicians.
Other obstacles included physicians’ tendency to be authoritarian and intimidate patients, and patients’ fear of being perceived as “difficult,” possibly to the detriment of the relationship with their physician and the quality of care they receive.
Patient reluctance can be overcome with good decision aids, patience and prompting from physicians, Simmons says.
Sometimes patients arrive armed with their own research, the validity of which can vary. That’s an opportunity to introduce decision aids with the correct information, says Ganguli.
As for authoritarian physicians, differing communication styles will always exist, but a primary care practice should implement protocols to ensure that the decision aids are being distributed and follow-up conversations are taking place, Simmons says.
One of the biggest concerns primary care physicians have about shared decision making is that discussions with patients will require time they simply don’t have. A 2013 study by the RAND Corp. found physicians reported not having enough time to engage in sharedn decision making
Decision aids can ease the time crunch. Shared decisions about treatment usually aren’t made on an initial visit or diagnosis, but after a series of appointments or an initial course of treatment. Giving patients time to study aids well before a decision has to be made saves office time. Some practices use assistants to lead discussions and explain aids; electronic health records that incorporate shared decision making also can save time.
Though the process does take extra time, Mayo’s Allen, for one, says she doesn’t mind: “I don’t find it an unwelcome addition to the visit because it really guides the visit.”
More than scheduling or aids, successful collaboration requires physicians to consider their patients as more than just people to be treated, but individuals who have an equal say in how they’re treated.
Simmons recalls recent conversations with two 42-year-old women about mammograms, a procedure she used to recommend routinely for patients at average risk of breast cancer.
But shared decision making and the debate over the benefits of mammography have changed the conversation. Simmons asked both women to imagine not doing a mammogram and finding out three years later that they had breast cancer. Would they regret not having the mammogram earlier or be grateful that they didn’t have to live with the diagnosis for the past three years?
“They had very different answers,” Simmons says. “One said, ‘I could not live with the idea that I could have done something that might have made this an easier treatment.’” The other said that, knowing there was probably not much she could have done to treat it earlier, she would rather have not known earlier.
“Now, if we had done a mammogram for the woman who didn’t want to know and risked a false positive it would have been the wrong recommendation for her. And for the other woman who was concerned about missing the chance to catch something early, it would have been a mistake not to start (mammograms).”
“The decision can be very different even though on the surface there were so many similarities. And there’s no way I would have known that without asking them the question,” Simmons says.
And if the patient makes a choice with which the physician disagrees?
Allen says it’s a mistake to think in terms of right and wrong choices. Just because a properly informed and engaged patient makes a decision a doctor disagrees with doesn’t make it wrong. Only the patient truly knows their own values and fears, tolerance for risk, ability to handle pain and other factors that might go into a decision.
“A patient’s voice and say do have value,” Allen says. And if the physician is worried that a patient could be harmed by a decision, “that’s where the art of medicine comes in.”