Making Choice an Option
patients that the statistics regarding how often cancer recurs after a women chooses lumpectomy are only "'averages.' Your doctor will give you numbers that are more specific to your situation." The booklet also explains that sometimes, medical reasons make mastectomy the better choice—such as if, for example, a woman has cancer in two or more separate areas of the breast; if she is pregnant and so cannot have radiation after surgery; or if she has had a lumpectomy that did not remove the entire tumor along with a margin of healthy tissue around it.
Finally, the booklet urges patients to take their time deciding: "Breast cancer is not amedical emergency. You can take several weeks to learn about your choices, talk with your doctors, think about your preferences, and make a good decision."
The great advantage of the decision aids, says Kate Clay, program director of the Center for Shared Decision Making, "is that patients can take them home to read them and view them—usually more than once. One thing we've learned," she adds, "is that people make decisions jointly, with other family members as well as with health-care providers. And they find it very useful to look at the videos with their families, so that they are all sharing the same information."
Most importantly, patients know that the information they're getting is based on the best medical evidence available at the time. Without these decision aids, many family discussions are riddled with the spotty anecdotal evidence that begins "When my neighbor's daughter had breast cancer, her doctor said . . ."
But videos and booklets only complement the dialogue between patient and doctor. Patients do not want to be left on their own with the research: "The video helps women address their conflicts, but there is still a lot of uncertainty," says Collins. Typically, after DHMC patients review the materials at home, they meet with their
"[It] helped me
to feel more
doctors. At that point, physicians ask questions to make sure that patients understand what they stand to gain or lose if they pick a particular option.
Understanding the odds
At this step, it often becomes apparent just how difficult it is for many patients to come to grips with statistics about probability and risk. For example, how does a patient assimilate the fact that in one Swedish study, "15 out of 100 men who chose watchful waiting died of prostate cancer over the next 10 years—while, over the same span, 10 out of 100 men who had prostate surgery died of the cancer"?
One way to express the difference is to say that surgery cut the chance of dying from prostate cancer by one-third—from 15 men out of 100 to 10. That sounds like an enormous improvement. But another
way to look at the same numbers is to say that among the 100 men who didn't choose surgery, only 5 more died, while 85 avoided the risks of death, complications, incontinence, and impotence. The patient needs to understand that both statements are true. The question, then, is this: What type of risk is he more willing to tolerate?
Doctors find different ways of "framing" what the odds mean. "You have to watch the patient's face," says Clay, "until you find a formulation that you can see makes sense to them." Some doctors use visual aids like colored pie charts to make the figures easier to understand. Many patients can grasp ratios and percentages better when they're explained graphically rather than numerically. "In my early days, I used a cardboard wheel with two colored layers," Llewellyn-Thomas recalls. "I'd show people how it looked when it was 10 percent purple and they'd grab it from me: 'Yeah, yeah,' they would say. 'That's what 10 percent looks like.'"
Doctors in the shared decision-making program stress that patients should