A 68-year-old patient with a history of heart disease and a high risk of cardiovascular disease was reluctant to go on statins even after a decision aid showed doing so could measurably cut his 10-year risk of atherosclerotic events. Using the decision aid to dig deeper, Damara N. Gutnick, MD, FACP, found out why: The patient had heard statins had a high risk of muscle pain.
Knowing this concern, she discussed the odds of getting this side effect, differentiating it from muscle damage, as well as what could be done if it did occur. Then, she emphasized, the patient could make a decision balancing that understanding with his desire to be around for the long term for his three children.
Because she considers decision aids an integral part of her shared decision-making approach to patient care, Dr. Gutnick has standardized their use in her practice. She said they're not too time-consuming, a common concern, because she has already vetted and selected those that address her patients' most common decisions.
The key, she emphasized, is that she uses them only for situations for which they were designed: when there is not one clearly right answer to a clinical decision, such as for selecting a depression medication or deciding whether to have prostate cancer screening. They are also being used for chronic conditions. For example, the Mayo Clinic Shared Decision Making National Resource Center offers a decision aid on diabetes medication choice.
Dr. Gutnick contended that rather than adding to physicians' time burden, decision aids instead save time and costs by better meeting patient needs and thus increasing adherence.
Consider aids a tool that provides a structured way to think through the pros and cons of a treatment, said Christopher E. Cox, MD, associate professor of medicine at Duke University in Durham, N.C. Typically written at a sixth-grade literacy level, they can help patients learn the lingo and gain confidence to make a good decision for themselves while also helping physicians present complex nuanced information in a really understandable way, he said.
But there can be implementation hiccups. Even when used appropriately, “You don't have time to go through 12 decision aids. But then you can't make 12 meaningful decisions in a visit,” said Michael Soung, MD, FACP, core clinical faculty at Virginia Mason Medical Center in Seattle. He recommended using aids for just a few concerns when a patient has a lot of uncertainty or unfamiliarity rather than for issues with more clear-cut decisions or for decisions the patient has already made.
To ensure that decision aids are working, Dr. Gutnick uses teach-back. For example, she showed the patient at risk for heart attack an aid's graphic representation of his risk and said, “Tell me what you see here.” His reply, “I guess I should be taking the medications because I can decrease my chance and I don't want a heart attack,” moved the conversation forward. When he said, “Somebody told me the medications can cause kidney damage,” she was able to discuss that likelihood and note that she would order a blood test if he showed any symptoms.
Having this discussion up front is preferable to waiting until the patient doesn't take the medication, said Dr. Gutnick, medical director of the Montefiore Hudson Valley Collaborative and associate professor of epidemiology and population health at Albert Einstein College of Medicine in Bronx, N.Y.
That's the point, according to decision aid expert Victor M. Montori, MD, FACP, an endocrinologist and professor of medicine at Mayo Clinic in Rochester, Minn. He distinguishes tools that give information to patients (patient decision aids) for their review prior to the visit to prepare from others, conversation aids, that are used during the consultation.
“Shared decision-making is the opportunity to find out who the patient really is. The point is not the choice they make, but why,” he said.
Not always a fit
Not all participants are ready to be a driver of the decision-making process, however. Patients from countries or societies where the physician is normally paternalistic may find decision aids odd or even uncomfortable, said Elbert S. Huang, MD, MPH, FACP, professor of medicine and director of the Center for Chronic Disease Research and Policy at the University of Chicago. “It works most of the time, but you have to respond to … match what the patient wants,” he said.
In those instances, Dr. Gutnick said she still uses the decision aid but offers to share what she thinks might work based on what the tool found. For example, she might say to a patient choosing a medication for depression, “You mentioned sleep is a problem, so these [medications] are probably not a good choice.”
Also, decision aids may not work well for crisis or end-of-life events, said Dr. Cox, the lead author of a recent study on use of a decision aid for surrogate decision makers of patients receiving prolonged mechanical ventilation that was published Jan. 29 by Annals of Internal Medicine. His study showed that surrogate decision makers were far more optimistic about one-year outlooks than the data supported.
“It was very surprising to see the extent to which [data] didn't move people's opinion on prognosis or change the decisions they eventually made from their initial beliefs,” said Dr. Cox. He said that may be due to high emotions during traumatic times, or because surrogates felt they needed to be optimistic regardless of facts or because they otherwise didn't trust physicians to give the highest-quality care if they were to have chosen a less aggressive goal of care.
The aids are also not intended for physicians who use them just to bolster their own decisions, said Dr. Huang. “By design, decision aids are not meant to direct patients to one decision or another,” he said. Thinking that showing statistics or diagrams will scare patients into making a particular decision, he said, undermines their whole purpose.
In a shared decision-making model, patients need to be assured that the physician does not always know the right answer and is not just seeing if the patient can figure it out, said Dr. Montori. “I say, ‘If I knew what the right answer was I wouldn't waste your time,’” he said.
Using aids in practice
To most effectively use aids in practice, select topics that would be common in your patient population, said Dr. Gutnick. Dr. Soung, for example, uses them for deciding about CT scans for lung cancer screening, medications for osteoporosis and depression, second-line diabetes agents for patients already on first-line treatment, and, like Dr. Gutnick, helping patients understand their cardiovascular risk and options for next steps.
Decision aid experts recommended choosing among the thousands available by ensuring they come from a reputable source, are based on evidence, and are updated before using them.
When using a decision aid, Dr. Soung recommended explaining that the aid is based on the best evidence for risks and benefits. Preface any discussion by making clear that the decision is ultimately up to the patient based on his or her personal values and preferences. “People listen differently if they know they have to make a decision on this at the end,” he said.
While Dr. Soung noted that incorporating aids into the electronic health record would save time, for now they are typically available on paper and online. Dr. Montori suggested sitting shoulder to shoulder with the patient and looking at the screen or handout together. If a patient wants a printout, he or she can generate PDFs to print, email, or upload to a patient portal, he noted.
Dr. Gutnick clicks through screens along with the patient. She often gives the patient a printout of the results and side effects. She also provides the decision aid's website so the patient and his or her family can review it if desired. She finds that patients with those printouts who experience drug side effects will come in to the next visit knowledgeable about alternatives. To ensure an aid's usefulness, Dr. Gutnick covers up names of medications listed that are not on the patient's formulary.
Also check to ensure the aid was based on studies with a patient population similar to yours, said Dr. Huang. He published an article March 17, 2016, in the Journal of General Internal Medicine finding that decision aids tailored for minority populations can have a positive impact and reduce health disparities. But not all aids historically have been studied in those populations, he noted.
Dr. Cox recommended creating a list of five to 10 favorite decision aids to have available in both print and online form. Nurses and physician assistants should have access to them too, he said.
While some physicians may think having patients complete the aid before the office visit will save time, Aaron M. Tannenbaum, MD, said doing so may be more likely to backfire. The patient may be overwhelmed by the potential diagnosis from a screen or react emotionally because a family member had that diagnosis, said Dr. Tannenbaum, who is a fellow in the division of pulmonary, allergy, and critical care at the Hospital of the University of Pennsylvania in Philadelphia. He wrote an editorial accompanying Dr. Cox's study in Annals.
In addition, the patient might misunderstand the information or may not be able to determine which information is most relevant, he said. “They could get frustrated and [then] not want to make a decision at all,” said Dr. Tannenbaum.
Using decision aids before the visit also risks the patient trying to please the physician. “The tendency is to ask, ‘Did you read the material I sent you?’ Everybody says yes. Then it becomes clear that some have and some haven't,” Dr. Montori said, noting that those patients typically have no questions or will agree with whatever the physician says. In those cases, he said, the aid falls short of its promise to improve effectiveness of care by co-creating a plan.
Instead, he believes using decision aids as a tool for discussion during a patient visit will prompt conversations even when the patient might prefer to opt out. For example, he noted how he responds when patients ask him to make the decisions for them that he would for his mother. “I say, ‘My mother is a chain-smoking, gin-and-tonic-drinking 70-year-old, and you look nothing like my mother. I can't do this without this conversation, so let's figure out what to do.’”