Patient Engagement
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“My Body, My Decision”: Not So Easy (10:09)

“My body, my decision.” This common refrain from patient advocacy groups says that what a patient does to their body is up to them, that they are the ones who live with the consequences of their health care decisions and therefore should be involved in those decisions.

“But this is not an easy thing to do,” says Angela Fagerlin, Chair of Population Health Sciences at University of Utah Health. “We think it should be. You just have to tell your doctor what you want. You just have to ask the questions you need. But let me tell you, it is really difficult.”

Fagerlin recounts how she recently tore her ACL while skiing. Having torn her ACL twice before, she knew exactly what her injury was. She visited her surgeon, but the two of them failed at shared decision making that day. She wasn’t able to get her questions answered, and he wanted her to stop running — a favorite activity.

“If I, somebody whom some people think of as an expert in shared decision making — something that I know how to deal with very well, I know how to ask those questions —can’t get my physician to engage in shared decision making, how can most people do this?” asks Fagerlin.

How can health care providers improve this process so that the patient’s voice is heard?

People will do whatever they think is right for them, and providers have to understand what’s right for them at that particular time. However, Fagerlin often hears from colleagues, “But that’s what doctoring is. We already do shared decision making.”

“And that’s part of the problem,” she says. Shared decision making doesn’t always happen, but if physicians believe they’re already engaging in it, it’s difficult to change their behavior, to change how they ask questions and listen to patients.

Both patients and providers face challenges with shared decision making. “When you get a new diagnosis that you have diabetes now or that you now have breast cancer or prostate cancer, first of all, your head is just exploding with emotions,” says Fagerlin. Adding to that, a patient’s ability to comprehend information about their diagnosis can be difficult.

“When your doctor is speaking to you in jargon, if the stuff on the website is in jargon, how are you supposed to be able to form an opinion, form a preference if you don’t even understand your disease or the risks and benefits that are associated with your treatment options?”

Literacy and numeracy challenges can make it difficult to understand complex medical information. Fagerlin cites a 2006 study by Terry Davis that found that when participants were given pill bottles with different instructions, 46% of participants misunderstood the instructions on one or more of the bottles. “If they can’t do that, how are they supposed to compare four different treatment options that each have three or four benefits, three or four risks?” Fagerlin asks.

In the early 2000s, Isaac Lipkus asked highly educated study participants which is the bigger risk: 1 out of 10, 1 out of 100, or 1 out of 1,000. About 22% of participants answered incorrectly. “When we think about talking to patients and telling them ‘this is your risk and this is your benefit’ and you just start throwing out numbers, they’re not understanding it and they’re not going to be able to use that information to form a preference,” notes Fagerlin.

“There’s often a huge mismatch between what people say they want and what they actually get” due to a lack of knowledge, she adds, referencing a study she conducted among patients with breast cancer. These patients said that the most important thing to them was to avoid a reoccurrence or maximize survival, but more than half could not answer which treatments were best for their goals.

Another concern: Patients want to do what their doctors say. In a study of prostate cancer patients conducted by Fagerlin, the only thing that predicted a patient’s treatment was what the doctor recommended. And in a study of wealthy, highly educated patients in Palo Alto, Dominick Frosch found that the vast majority did not want to disagree with their physicians. “They were afraid of what the consequences were,” Fagerlin explains. “If a doctor leads with a recommendation saying, ‘I think you need X,’ it is exceedingly difficult for a patient to say, ‘I don’t think I need X. I think I need Y.’”

“What we need to do is to involve the patients more,” says Fagerlin. Patient preferences, values, and goals should have predicted prostate cancer treatments, not doctors’ recommendations alone. “Obviously, what their physician said is very important, too, but there has to be shared decision making, both voices need to be heard.”

How can providers involve patients more? It’s simple, says Fagerlin: Ask the patients. “One of the most important things we can do is just start by asking people.” In the prostate cancer treatment study, only 73% of patient-doctor encounters included asking what the patient wanted, what they thought about the recommended options. And only 30% of those conversations involved a more than one- or two-sentence discussion where patients were asked about their feelings, values, and goals.

Fagerlin acknowledges that clinicians would love to talk with their patients more, but that, pressed for time, they often don’t think they can. But the work of shared decision making doesn’t have to all be done within the context of a doctor’s visit. For example, decision aids that patients read before appointments can help them learn about their disease and treatment options, but these aids aren’t enough for making informed preferences. Adding health coaches to the mix is more beneficial.

Fagerlin cites the work of Jeff Belkora in a breast cancer program that used health coaches who were premed interns. After patients read decision aids and had time to think, the health coaches prepared them for clinician visits by helping them figure out what questions they had in advance — rather than the patient remembering their questions as the clinician visit wrapped up.

Health coaches help patients think about what their preferences, goals, and values are, and write those down so that the patient can remember them while conversing with the clinician and so that the clinician has them in hand, as well. “Instead of the physician giving the spiel about all the risks and benefits, the doctor can do what the doctor actually wants to do,” says Fagerlin, “which is engage in a conversation, asking people about what’s best for them, what their goals and their values are related to this treatment.”

From the NEJM Catalyst event Patient Behavior Change: Building Blocks for Success, held at Duke University, April 4, 2018.

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