What Is Shared Decision-Making?

And how can it help patients?

Health care professionals are embracing the idea of shared decision-making, where patients become informed partners in their choices.
Health care professionals are embracing the idea of shared decision-making, where patients become informed partners in their choices.
American Heart Association News via AP

Traditionally, many decisions about medical treatment were left up to doctors: They decided, and patients agreed.

Today, health care professionals are embracing the idea of shared decision-making, where patients become informed partners in their choices. A new report from the American Heart Association, published Monday in the journal Circulation, could help make that concept more common in cardiology.

The old model of decision-making is familiar to anyone who has watched a classic medical drama on TV, said Cheryl Himmelfarb, who led the expert panel that wrote the report.

"There was a paternalistic approach with the doctor making the decisions," said Himmelfarb, a professor at the Johns Hopkins University School of Nursing in Baltimore. "As health care professionals, we now focus on placing the patient at the center of care, informing them about their options, and engaging them in treatment decisions. We engage patients by asking, 'What's important to you? And what are your priorities and goals as we talk about a treatment plan?'"

The report, issued as a scientific statement, explains the importance of shared decision-making, identifies barriers to its use and highlights gaps in the research about it.

"I think there's a strong recognition in American medicine of the importance of patient engagement – not only in their care, but in deciding what types of care and types of procedures they're going to get," said Dr. Larry Allen, a professor of medicine at the University of Colorado School of Medicine in Aurora. "And in order to optimally engage patients in that process, we need to outline ways in which the health system and clinicians like myself can better get those patients involved in their care."

The concept has its roots in cancer care in the 1980s and has gradually spread to other fields, said Allen, a cardiologist who helped write the statement.

Shared decision-making comes in many forms, he said. "A common definition I like is that shared decision-making is a meeting of two experts, where the doctor is the expert on the medical issues and available treatment options," while the patient is the expert on their own values and preferences.

Done right, Allen said, the conversation leads to a tailored approach to treatment that balances the best evidence-based care with the patient's goals.

To illustrate the different approaches to decision-making, he used the example of someone with heart failure who might need an implantable cardioverter defibrillator, or ICD. That's a device that can detect a dangerously irregular heart rhythm and shock the heart back into a normal rhythm.

Doctors know that once a heart's ability to pump falls below a certain threshold, the risk of sudden death from such arrhythmias increases, Allen said. So historically, he said, the doctor might have told a patient whose heart had reached that threshold, "You know, your heart hasn't gotten back to normal on medicines. So, I'm going to send you to the electrophysiologist, because you need to get an ICD, because it could save your life." The patient would go to the electrophysiologist, sign an informed consent form and get an ICD.

"Shared decision-making goes way beyond that," he said.

With shared decision-making, Allen would schedule time to explain that while getting an ICD is a reasonable option, so is not getting one. A care team might use aids such as brochures or videos to spell out the procedure and risks, so the patient would understand that while an ICD can save their life, it does not improve the heart's function or help them feel better.

To a doctor, knowing that over five years, an ICD will prevent seven deaths for every 100 surgeries might make the implant an easy choice, Allen said. But "some patients would look at that and say, 'Well, this is a lot to go through for that benefit,'" especially if their baseline quality of life has been diminished by chronic disease.

Overall, the benefits of shared decision-making are clear enough that with some heart procedures, including ICDs, Medicare and Medicaid already require doctors to include it if they want to get paid.

A 2017 study, published in the journal Circulation: Cardiovascular Quality and Outcomes and cited in the statement, for example, found that people with heart disease who went through shared decision-making had better physical and mental health, better adherence to medication and lower rates of hospitalization and emergency department use. Patients also reported better communication with their doctors.

Open lines of communication mean that if a patient has a problem, such as a side effect of a new medication, they can reach out and problem-solve with their care team rather than simply stopping the medication, Himmelfarb said. "When people are more engaged in decision-making, they understand the pros and cons of various treatment options, and they're more likely to adhere to the treatment plan and to continue that communication."

The scientific statement suggests shared decision-making also could help reduce implicit or unconscious bias among health care professionals. "Shared decision-making promotes equity via patients and clinicians sharing the best available evidence as well as the needs, values and experiences of individuals and their families when making health care decisions," Himmelfarb said.

But research on how to best approach different cultural groups is lacking, according to the statement, which details other barriers to wider adoption of shared decision-making.

For one, many doctors may perceive that they already practice it. "But research has shown that often, that's not the case," Himmelfarb said. They also cite limited time as a barrier, although research shows that shared decision-making can be accomplished even within the constraints of short clinic visits. Also, current models of payment for doctors' visits do not always align with the goals of shared decision-making, she said.

And, Himmelfarb said, "we really need more high-quality decision aids that describe the evidence in an easy-to-understand way to guide decisions for specific cardiovascular conditions."

Underlying all that, Allen said, is that medical decisions can be "incredibly complicated."

"Oftentimes, we see patients who say, 'Doc, what would you do for your mom?' And I often say that's because the patient feels overwhelmed by the decision."

But, Allen said, when he's able to take time to explain the options and the patient works to understand them, the patient often can make a choice based on their own opinions instead of just deferring to what he recommends.

"We need to engage patients in shared decision-making and that does require effort on their end," Himmelfarb said. "It definitely is a two-way street."

Patients should ask questions, get clarification if they don't understand something and make sure they alert their care team to their goals and priorities as well as things that could get in the way of following a treatment plan.

Family members and other caregivers are central to the process as well, Himmelfarb said. "Patients should feel very comfortable in inviting and insisting upon participation of their family members, where appropriate, any time that that makes them more comfortable."

Making the practice work on a wider scale is an evolving process, Allen said. "I think we've already made big strides in the last decade to improve shared decision-making overall. So, the statement, I think, recognizes that this has become mainstream, and attempts to move from concept to action."

Ultimately, he said, shared decision-making can ensure that with all the "amazing new technologies and treatments that we have in medicine, that they really are applied to patients in a tailored, meaningful way that meets their own values, goals and preferences."

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