AT THE NCCN ANNUAL CONFERENCE
Hollywood, FLA. (FRONTLINE MEDICAL NEWS) – Although patients and physicians should always be partners in medical decision making, guiding patients into making medically sound choices may involve a lot of listening and empathy, often followed by a little friendly persuasion, suggests an expert in health care decision making,
“Even when you get to a situation where the clinical practice guideline would point toward shared decision making, we’ve got to do shared decision making right or the guideline just doesn’t do the work for us. We clinicians have to know how to partner with our patients to make decisions when their values matter,” said Dr. Peter A Ubel, professor of business, public policy, and medicine at Duke University, Durham, N.H.
Dr. Ubel discussed how to understand and use patient preferences in cancer treatment decisions at the annual conference of the National Comprehensive Cancer Network.
In the case of early-stage prostate cancer, for example, treatment options include surveillance or active treatment with surgery or radiation, but the risk/benefit trade-offs require careful discussion.
“The different approaches have different pros and cons: If you get active treatment, there’s a pretty good chance you’ll experience incontinence or erectile dysfunction, whereas if you undergo surveillance you won’t experience those as side effects of the surveillance strategy, but you will live with a cancer inside your body, the accompanying anxiety, and wondering every 6 months whether it has advanced,” Dr. Ubel said.
“The question is how do we go figure out which treatment is best for which patient?” he added.
What doctors say not always what patients hear
To examine how decisions are made, Dr. Ubel and his colleagues conducted a study in which patients scheduled for biopsy for suspicion of prostate cancer were approached at the time of their clinic visits and asked to participate in a study about prostate cancer decision making. Patients were given a booklet aimed at the seventh-grade reading level describing prostate cancer and its treatment, and were asked, once they had finished, what course of therapy they might pursue if the diagnosis turned out to be positive, and why. They also were asked if it was important to them to maintain natural sexual function.
The encounter between the patients and their urologists at the time of diagnosis were audio recorded, so that investigators could see whether physicians recommend specific treatments and why.
“One of the things that really jumped out in this study was just how much language, how much explanation urologists use to help patients understand their diagnosis,” Dr. Ubel said.
In one encounter, the urologist explained to the patient that 3 out of 12 biopsy cores had less than 30% cancer involvement, suggesting moderately low-risk disease, but then went on to talk about Gleason scores, tumor grades and patterns, and risk categories.
“When a patient just finds out he has prostate cancer, it’s a tough time to put a whole bunch of information in front of him for him to absorb and make a decision,” Dr. Ubel said. Patients need time to absorb the shock of a cancer diagnosis first – even a diagnosis of an early, easily treated cancer – and information overload may actually reduce their ability to comprehend their choices or retain the information, he added. The urologist in this scenario is making a very earnest effort to tell the patient that he doesn’t have the kind of cancer that’s ever going to kill him, or that it is highly unlikely to cause any problems for the next 10-15 years, and there is ample time to decide how to treat it.
“But the doctor kind of forgets that the patient doesn’t speak medicalese, and the doctor feels like you really have to give them thorough informed consent, after all. So you need to inform the heck out of patients with all of the medical detail you believe is necessary to understand the decision, instead of the translation of the medical detail into terms the patient can understand,” he said.
An important part of shared decision making, therefore, is to make sure that patients can understand their alternatives, but not to overwhelm them with detail, because they may give up and ask the physician, “What do you think I should do?” which can introduce physician bias that may not always lead to the right choice for that patient.
“I actually morally don’t recommend that. I think instead we should give the right amount of information at the right time so they can actually get engaged in the choice,” Dr. Ubel said.
Discussion informs choices
The investigators looked at how prediagnosis education materials and discussions with urologists shaped patient decisions about treatment choice. Patients were called before their appointments to ensure that they had read the booklet, and then just before the appointment were asked which way they were leaning if the diagnosis turned out to be positive.
The investigators found that of 44 patients who expressed a preference for active surveillance before the appointment, 55% actually went on to receive active treatment. Among 119 patients with no expressed preference for surveillance or active therapy, 46% went on to treatment, and of 118 expressing previsit preference only for active surveillance, 54% went on to receive it.
“The leaning that they had before seeing the doctor had no influence on what treatment they got,” Dr. Ubel said. Instead, physicians’ recommendations had a strong influence on treatment choice. Recommendations are an essential part of the discussion, “but I don’t think we often do them well,” he said.
Ask patients to think out loud about what they have read or have been told, and ask them to repeat in their own words what they heard the doctor say, Dr. Ubel suggested. It’s incumbent on the physician to try to understand the patient’s preferences, and say something like, “I’m the expert on medical facts, but you’re the expert on you,” or “What sounds good and bad to you about that treatment alternative?”
Finally, physicians need to make recommendations based on patient preferences, he said.
For example, in one recorded encounter, the physician asked the patient, “Are you the kind of person where the idea of just watching your PSA is that unsettling to you?” When the patient replied “Yeah, I think I would be,” the physician was able to make an informed recommendation, saying “then I don’t think you’d be a good candidate for surveillance.”
“This doctor did not just make a recommendation; he tried to find out something about the patient first, and that’s critical to giving good advice,” Dr. Ubel said.