When Illness Strikes: How to Get the Best Medical Care

We can now research our illnesses like never before. But whom do you trust, and where do you stop? Two women, one a cancer patient who took charge of her own drug research, the other a scientist who faced her own health crisis, show how they found their way

By Laurence Gonzales
In the ’70s, three British obstetricians began a groundbreaking and monumental project that would be published in 1989, titled The Oxford Database of Perinatal Trials. Using a volunteer workforce to catalog decades of research, it showed which of the many types of care were unequivocally effective during pregnancy and childbirth. Electronically searchable, it gave clinicians, for the first time, the ability to practice what is now being called evidence-based medicine. That effort led in 1993 to the establishment of the Cochrane Collaboration, a vast, multinational project designed to bring the same rigorous standard of evidence to every field of healthcare.The ramifications of such a database for patients are enormous. But the effort is not without controversy. In the fall of 2001, for example, a Cochrane analysis suggested that the available evidence from clinical trials did not show that regular mammograms save lives. "The whole flap about mammography is really a culture clash," says Kay Dickersin, director of the U.S. Cochrane Center and an epidemiologist at Brown University, whose specialties include women’s health and issues of bias in scientific research. "It’s public-health scientists versus doctors. The scientists rely on data grouped together from populations, such as the percent of women who’ve had mammograms and survived, while doctors and patients are most interested in how the individual patient fares. And it’s very hard for those two cultures to meet, because the individual might say, ‘Look, I’ll take any chance to have this detected early, and I don’t care if your data show that earlier isn’t necessarily better.’" That, of course, was the dilemma Darryle Pollack faced. On the one hand, she wanted to know what treatment had been shown to work; on the other hand, she wanted to be in collaboration with someone who respected her right to choose — even when the evidence, and her subsequent treatment choices, seemed to be in conflict. Evidence"Evidence-based medicine is not just practicing on the basis of the evidence," Kay Dickersin insists. She uses the example of tamoxifen, a drug that has been shown to increase the chances of survival for most breast-cancer patients, to explain this seemingly contradictory statement. Logic might dictate that, because the evidence says it works, it’s right for everyone. But that would be "cookbook medicine," a phrase used in criticizing the movement by people who fear that once a course of treatment is shown to be effective, everyone will be expected to accept it without question. Evidence, says Dickersin, is simply one element of what she prefers to call "evidence-based healthcare." "Other important components are patient values, physician values, physician knowledge and experience." In other words, a collaboration in which the patient and the doctor both have access to the best clinical evidence for what works and what doesn’t, and then decide together what course to take.In fact, Dickersin, now 53, was diagnosed with breast cancer herself in 1986 and was told to take tamoxifen — and refused. Her decision was based on a knowledge of the evidence as well as a knowledge of herself. "At some point I did seriously consider it," she says. "I elected not to do it because … Ahh …" She paused and sighed, as if this were difficult for her to admit. "I don’t like to take pills, so I just thought I was likely to become a noncomplier at some point because I did not view myself as, nor did I want to view myself as, a sick person. And I didn’t want to go into menopause at 34. Other women may have the same feelings but not make the same decisions. I’m a risk-taker in some situations, and this was one of them." She had come to the heart of the matter: When taking care of your own health, you have to be human and you have to be yourself. A good doctor will respect your feelings and allow you to walk your own path with dignity. Dickersin had such a physician: "My doctor didn’t say, ‘You’re crazy.’" Dickersin had three types of cancer in one breast, which were treated first by lumpectomy and then mastectomy a few weeks later. Her doctor told her that she had the option of "watchful waiting" with the other breast. But Dickersin knew that one of those three types of cancer had a tendency to spread.

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