I recently gave a talk about shared decision making at the annual conference for the National Comprehensive Cancer Network. Here is a nice write-up of that talk. For those of you silly enough not to travel to Florida to hear me pontificate!
After listening to the treatment alternatives—surveillance, or active treatment with surgery and radiation—a patient just diagnosed with prostate cancer asks you, “what would you recommend?”
How would you respond?
As a clinician, your responsibility is to find out what the patient is actually asking, and to provide a recommendation that reflects his or her preferences, Peter A. Ubel, MD, told attendees at the NCCN 21st Annual Conference.
One answer might be “I might make a different choice than you because I might have different preferences,” said Dr Ubel, the Madge and Dennis T. McLawhorn University Professor of Business, Public Policy, and Medicine at Duke University in Durham, NC.
Such a reply “is what should trigger the true shared decision-making conversation,” he added. Far too often, however, patients are inundated with information they either do not understand or find overwhelming in its sheer volume.
The “right” choice, he outlined, depends on how the patient weighs the trade-off between the anxiety of living with cancer and the side effects of the active treatments.
“To really empower patients to be partners in decisions where their preferences are important in determining what the right course of action is, we have to communicate better,” he said. “We have to understand decision psychology better than we do, and we have to make sure we know the difference between a medical fact and a value judgment.”
Dr Ubel, with the Duke-Margolis Center for Health Policy, provided an example of an urologist explaining a Gleason score to a patient: “low risk is Gleason 6, intermediate is usually 7s, with 3 + 4 or 4 + 3, depending on how it looks under the microscope. And then 8, 9, and 10 are all high risk. So it’s in the middle. It was 3 + 3 and 3 + 4, so just enough of the atypical cells of the grade 4 to make it 3 + 4, which means you’re intermediate risk.”
Although this represents an earnest explanatory effort, what the clinician is trying to say is, “you do not have the kind of cancer that will kill you, maybe never, but certainly not in the next 10 or 15 years. We have months to decide what to do about this. We found it early enough and we can take care of this.”
“That’s what the patient needed to understand, and instead, what ends up, is the doctor kind of forgets that the patient doesn’t speak medicalese,” he said.
Informed consent also plays a role, in that clinicians may feel the need “to inform the heck out of patients with all the medical detail [they] believe is necessary to understand the decision, instead of a translation of that medical detail into terms a patient can understand.”
One challenge with shared decision-making is that thorough communication is “not always good communication,” and “good communication takes time, to acknowledge and deal with emotion, to absorb and reflect on information,” he said. This includes the ability to take the patient’s perspective into account, with recommendations often evolving.
Dr Ubel outlined 3 approaches he believed clinicians “can do better to promote shared decision-making.”
“First off, we need to use a simple technique called ‘teach back.’ When you give people information about their treatment alternatives, don’t assume they understand it because they are nodding,” he said. “Find out if they understand it by asking them to tell you in their own words.” For example, “‘Can you tell me what you think you understand the alternatives mean?’”
“You will learn so much in hearing patients translate back to you what you just said to them. I guarantee you, you do that a dozen times…and by the time you get to that 12th patient, your spiel—because we all have spiels to describe information—your spiel will probably be half as long as it used to be and twice as good because you’ll realize, early on, that patients are not hearing most of what you say.”
Secondly, even if patients say they do not want to be full partners in the decision and want to be told what to do, clinicians need to get to know patients well enough to help them make the right choices.
“When a patient asks what you would recommend,” try to find out something about the patient first. “That is critical to giving good advice.”
Finally, what’s needed are “recommendations that are based on an understanding of patient preferences,” he said.
Dr Ubel concluded by noting that “we also should be careful about how much information we give people. People can be harmed by receiving too much information. Too much information makes it hard to comprehend, regardless of whether there’s jargon. You give too much information loaded with jargon and understanding is going to be very poor”—thus making choices more difficult.