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Q&A: Informing Medical Decisions

By Sarah Klein

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Quality Matters asked Richard Wexler, M.D., director of patient support strategies at the Informed Medical Decisions Foundation, to share his insights on the benefits and challenges of introducing patient decision aids and shared decision making in real-world clinical settings. Wexler draws his conclusions from his work overseeing the foundation's nationwide demonstration project, which has enabled primary and specialty care sites to test different approaches to helping patients with preference-sensitive conditions make decisions in concordance with their own treatment goals and values.

Quality Matters: With so much evidence supporting the benefits of shared decision making, why hasn't it become commonplace? 

Wexler: There are a number of reasons. For starters, a lot of physicians think they're engaged in shared decision making even though we know they are not. Persuading them of this is a challenge, partly because it's hard to get their attention. We're competing for shelf space with a lot of other compelling quality improvement initiatives. There are also incentive issues, and we're talking about behavior change, which is a big deal. Doctors tend to be action-oriented and they tend to do things for others rather than encourage patient autonomy. 

Quality Matters: So what's the best way to advance the use of shared decision making?

Wexler: Adjusting financial incentives will help, but developing and implementing them is tricky. Take accountable care organizations (ACOs) for example. Many people think ACOs will encourage the use of shared decision making techniques and tools because there's evidence to suggest their use results in greater patient satisfaction and more conservative use of medical resources. But putting them into practice may result in pushback from specialists in the ACO, especially if the implementation decreases procedure volume and internal incentives remain volume-based. How the ACOs will negotiate these things isn't yet clear. In the meantime, while we're building the ACOs, we need to find ways to reimburse provider teams using patient decision aids and practicing shared decision making.

Quality Matters: What metrics would you use to assess their use?

Wexler: We think decision quality is really important. We see it as consisting of three major components. One is medical knowledge. Does the patient have basic information about the risks and benefits of having a procedure, the alternative treatment choices, as well as the risks and benefits of doing nothing? That medical knowledge may consist of just five facts, but part of the measurement goal is demonstrating patients have that basic knowledge. The second part of decision quality is demonstrating that the patient participated in a decision-making process with a clinician and that during that process they understood a decision was to be made, what their options were, and the risks and benefits of those options. We also need to know they were asked what they preferred to do. The third component is how well the final decision aligns with what is important to them. That we call value concordance. That's the hardest of the three to measure.

Quality Matters: Why?

Wexler: Well, measuring a person's values, his or her goals and concerns, is hard. What do we mean by "values"? Do people know their own values? When in relation to decision-making do we measure them? And how do we quantify them? Then when you've got that, you have the match values to a particular decision—but which decision is matched with which values? It's tricky to do it right and hard to explain. That said, we can't let perfection be the enemy of the good and not get started. We can start with just knowledge measures, or just decision-making process measures, and start paying providers for shared decision making and using patient decision aids. In the end, you get what you pay for. 

Quality Matters: Aren't there some patients who don't want to engage in shared decision making, but would rather have their doctor offer them a definite recommendation? 

Wexler: Yes. It is all about the delivery. If you say, "I'm going to give you the scientific information in a way that you can understand and then you are going to make the decision," many patients would be overwhelmed by it. But if you say, "I want to learn more about you so we can ensure that the treatment fits with who you are or what your life situation is like," of course they would. Our research shows that patients who actually engage in shared decision making are overwhelmingly positive about the experience. We also hear a lot of the time, "What happens if the patient says to you, 'What would you do?'" The answer is "Well, I'm not you but I am happy to make a recommendation after I learn a little bit more about what's important to you."

Quality Matters: How do you ensure you're communicating effectively with patients at different educational levels?

Wexler: Obviously you have to make printed material as accessible as possible. That doesn't mean not using medical terms; it just means defining them. Another issue is health numeracy—the ability of patients to understand numbers. Supplementing text with graphics is a terrific way to convey information about the risks and benefits in an accessible fashion. If you show a picture of a hundred dots, with one colored dot to show one-percent odds of having a particular outcome, it's a lot easier to see. If you have voiceover animation, that's even better. It's also critically important that doctors give information about risk in absolute rather than relative terms, which is typically the way the pharmaceutical industry promotes things. They'll say something cuts your risk in half, when it reduces risk from one in 200 to one in 100. That's still a pretty small reduction and patients need to know that.

Quality Matters: What have you learned about what patients want to know

Wexler: With the most serious problems, the obvious thing people want to know is am I going to die from this? What are the risks and benefits of this treatment or that treatment? What happens if I do nothing? For elective surgeries they want to know about their functional recovery—to what extent are they going to resume or improve upon their level of activity. How long will my recovery time be? How much inconvenience will I have? Who else will I have to rely upon to help me out during this time? How much time will I be off work? How much will it cost me? What will happen if I do nothing? Then there is the timing. What happens if I wait to do this later because I actually have something important I want to do first? 

Quality Matters: Are most doctors ready to answer these questions?

Wexler: No. Some answers we just don't know, and there's a lot of information for doctors to remember and not much time to share it. Also, most providers don't really have the numbers at the tip of their tongue and they speak in generalities like "There is a small risk of this" or "This would be a rare thing" or "It is quite unlikely." Well, what does that mean? One person might think "quite unlikely" is less than one in two; another might think it means one in 100. We find that is more of a problem. Patient decisions aids can provide information for both patients and doctors. 

Quality Matters: But do doctors have time to answer all of these questions?

Wexler: That's why team-based care and patient decision aids are so important. Doctors don't have to provide all of this information themselves. Patient decision aids can give a lot of good, balanced information; team members can review this information with patients and get them ready for visits with their doctors. But time and resources are important issues and the current fee-for-service system doesn't provide enough funding for this type of infrastructure.

Quality Matters: Do you think medical education has changed to reflect the role of shared decision making? 

Wexler: There are some real pioneering efforts going on, but we have a long way to go. There's also a risk that if shared decision making is not modeled for students in the clinical world, that education is not durable. It's a chicken-and-egg problem. Do you want to educate and indoctrinate medical students and other health care students in the shared decision making process or do you work on the systems they are entering? We probably have to do both.

Quality Matters: There's been a fair amount of money allocated by the Centers for Medicare and Medicaid Services' Innovation Center to sites implementing different shared decision making models. Do you think these grants will help spread the use of shared decision making? 

Wexler: It may give some credibility to the effort and encourage policymakers to make it more sustainable. But the challenge with these grants is that they are up to three-year programs and there's an evaluation period that follows. So it will be four years before we see the results —and during that time the tools and technology will have changed. I think it's unfortunate that such an ethical imperative with so little potential for harm is being asked to measure up against other new initiatives with the same sort of randomized controlled trials and proof that you ought to be doing it. I look at the broad uptake of robotic assisted surgeries and ask how did that get so much traction? Why would shared decision making have to meet a higher standard of proof than robotic surgery?

Quality Matters: If there is more evaluation, what questions would you like to see answered? 

Wexler: I would like to see research on the variation of patient values and preferences across a number of different decisions to illustrate that people think of things and value things differently. I think it would create a compelling illustration of why we need to ask patients what is important to them and not make what Al Mulley calls "the silent misdiagnoses of patient preferences."1 The other thing I would like to see studied are the key cultural components that are necessary for an environment to promote shared decision making. 

Quality Matters: What would you guess they are?

Wexler: I would think that these cultures are less hierarchical and more team-based. I think they have an idea of what it means to be patient-centered, that they can see everything they do through the eyes of patients. I also suspect they use shared decision making in other areas of their business, not just when making health care decisions.

Quality Matters: Dentists and vets seem to do a good job of shared decision making perhaps because many of their services are paid directly by the patient. What other sectors do well at this? 

Wexler: Finance and real estate come to mind. What type of neighborhood would you like to live in? Are public schools important? What style of house do you like? That's all about assessing values and preferences. Finance is the same. Advisers ask about your goals, your time horizon and your tolerance for risk because there's no one solution. It's the same in medicine.


 Al Mulley, M.D. is the director of the Dartmouth Center for Health Care Delivery Science.

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