Giving Patients a Voice in Care Decisions

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Dr. Michael J. Barry became president of the Informed Medical Decisions Foundation in 2009, transitioning from his previous role as chief medical editor. The foundation strives to improve the quality of medical decisions through better patient education and greater patient involvement, which have been themes of Barry’s own research. Barry has been published extensively in peer-reviewed journals and other print media on topics such as shared decision making and prostate cancer. Barry continues to practice primary care and serves as medical director of the John D. Stoeckle Center for Primary Care Innovation at Massachusetts General Hospital. He is also a clinical professor of medicine at Harvard Medical School and is a member of the American College of Physicians Masters.

A health care decision is just that — a decision. I think we have forgotten that all too often in the health care industry. Care is not one-size-fits-all. Every patient is different, with unique needs, desires and lifestyles, and most health care decisions include multiple medically reasonable options.

Involving patients is the only way to help them make a wholly informed choice among reasonable options. Doctors have a medical education and many past experiences, but they must also educate themselves on the individual. After all, a health care decision is often the most important kind of decision doctors and patients make. So why should it be up to one or the other?

This is how the concept of shared decision making (SDM) came about. The collaborative SDM process allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences.

The patient and provider work as a team, transferring information back and forth in order to make a decision that achieves the best outcome. The provider offers expert knowledge so that the patient is fully informed of all care options and the potential harms and benefits, while the provider learns what matters most to the patient. As medicine gets increasingly complicated, patients don’t always know the key facts. SDM can push back that avoidable ignorance.

Health care executives and board members can play a large part in amplifying the patient voice in medical decisions. To start, health leaders must move away from the traditional view of patients as passive participants in health care. There has been a deep-seated culture in medicine that clinicians can quickly and easily pick the best treatment for a patient because they know best. Leaders must support and accelerate cultural change within their organizations that moves patients to the center of decision making. With a strong foundation focused on active patients, health organizations can then take the steps toward effectively implementing SDM.

Invite the Patient to Participate Every Time

The medical professional’s perception is often that patients don’t want to participate unless they tell you they do, but it is actually the opposite. Patients are often hesitant to push back on their clinician’s recommendations for fear of being labeled a bad patient.” This can be avoided by having a system that invites the patient to participate every time. Organizations should establish a routine in which every patient is invited to participate in the decision-making process to the extent they want.

Decision Aids

Health systems should also be thinking about how they can support patients working with their clinicians to make complex care decisions. Decision aids can help facilitate the process between the patient and provider by presenting unbiased, accurate health information to patients. They also help patients clarify and communicate the values they associate with different care options. According to a Cochrane review of studies of decision aids, their use has led to greater knowledge and participation in decision making, more accurate risk perceptions, lower decision conflict and fewer people remaining undecided.

Giving patients a major voice in medical decisions is a fairly new concept. But I believe that you can only make good decisions when there are multiple options once you fully inform and involve patients. That being said, there are a few barriers to SDM in modern medicine.

Workflow Processes Must Evolve

Like most other industries, health care is dependent on workflow processes. Our workflow process may have to evolve over time to incorporate SDM. Clinicians will need to set aside the time to inform and involve patients, but decision aids can help minimize the time needed, and even help save time. However, it’s not primarily about saving time and costs; it’s about making the right care decisions with the people who will be most affected by the outcomes.

Another consideration about SDM is that some patients may pursue less aggressive treatments once they are fully informed. Patients tend to be more conservative than doctors in terms of major surgeries. However, we have worried for years about operating on the wrong leg. It’s time to worry about whether we are operating on the wrong patient! That is a patient who wouldn’t want the procedure if he/​she knew all the facts.

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By Michael J. Barry, M.D., President, Informed Medical Decisions Foundation