Making Choice an Option
realize that they can make choices not only about treatments but also about certain screening tests. Even a test carries risks as well as benefits. In some cases, there is little question and the advantages clearly trump the hazards. Pap smears to detect cervical cancer, for example, have all but wiped out the disease in the U.S.—while the risks are negligible. The PSA test for prostate cancer, by contrast, offers uncertain diagnostic benefits—and the danger of life-changing side effects if the patient goes ahead with treatment for early-stage prostate cancer.
The trouble is that there's no hard evidence showing that a PSA test will significantly reduce a man's chance of dying of prostate cancer—or even extend his life. The issue is complicated by the fact that because prostate cancer usually takes so long to develop, men who discover that they have it will probably die with the cancer but not because of it. They may never even experience any symptoms.
The American Cancer Society (ACS) recently came out with a clear new position on PSA testing—saying that "because the current evidence about the value of testing for early prostate cancer detection is insufficient to recommend that average-risk men undergo regular screening," PSA testing should be offered to men 50 and older, but not recommended. Instead, the ACS now favors "shared decision-making" and advises doctors to discuss with their patients the "potential benefits, limitations, and harms associated with testing" and then let the patient decide. In fact, the ACS's prostate cancer advisory committee considers it "inappropriate" for doctors to either "recommend" or "discourage" PSA testing.
At this point, it's worth mentioning that five years after his urologist diagnosed early-stage prostate cancer, Joe Rubin's PSA levels remain below 4, indicating a very low risk of dying of prostate cancer. There is no sign that the cancer is
When women learn they have breast cancer, says reconstructive surgeon Dale Collins, "often, the first reaction is 'Oh, my God, I have cancer—just take it off.' But usually you can get them down off the chandelier."
growing or spreading. Nevertheless, he still goes for annual PSA checks.
"Once you've been told you have cancer, you feel you have to," he says, "even though I'm not really worried. Frankly, I wish I'd never had the first test. Then I wouldn't have to do this. On the other hand, Medicare pays for it and I still like my urologist—I really don't mind seeing him." His wife is a little less generous. "This is why Medicare is going to go broke," she says.
Step two on the decision-making list is sorting out "your own preferences." As the Dartmouth breastcancer video
observes, a patient must face up not only to the facts—about risks and benefits—but also to her own feelings. Studies show that physicians are not good at guessing patients' preferences; they need to hear from the patient.
One way for patients to begin to communicate them is by filling out a form like the personal decision guide developed by the Ottawa Health Research Institute. It gives patients an opportunity to show the doctor what they already know about risks and benefits, what risks they think are "most likely to happen," and what matters most to them (on a scale of one to five stars).
Once patients begin to spell out their concerns, the physician can help guide them through the often very difficult process of sorting out priorities. Life circumstances can play a major role.
A breast-cancer patient with young children may be worried about dying before her children are grown and so may lean toward the most aggressive choice—a mastectomy. But her husband may feel she gives their children toomuch attention already, to the detriment of their sex life. Would a mastectomy further affect their relationship?
A prostate cancer patient with an understanding employer may feel he can take time off to undergo external beam radiation—a brief treatment five or six days a week for six to eight weeks. Another patient may fear that if he missed that much work, he'd lose his job. Yet if he opts for watchful waiting, will it only add to the anxiety that makes it hard for him to stand up to his boss?
As patients begin to articulate their fears, "people start to think in a very circular way, so their thoughts are chasing each other. You can almost see it physically when they walk through the door," says Kate Clay. "What I bring to the table is my expertise as a nurse and the ability to pick out what it is that seems to be really troubling them."