Patient Empowerment Is Not Always the Answer
Beware overreaching government efforts to detect breast cancer
Posted Sep 20, 2012
JoAnn Pushkin’s breast cancer was diagnosed at an advanced stage because the density of her breasts obscured the tumor on her mammograms. That was shocking news to Pushkin, who only learned that her breasts were radiologically dense at the time of her diagnosis. Activated by this revelation, she has become a leading advocate of legislation, like that recently passed in the state of New York, requiring mammography experts to inform women when their breasts are dense so the women can talk with their doctors about whether they need additional screening.
Information. Empowerment. Promoting doctor/patient communication. Who wouldn’t be in favor of those things? But underlying the New York law are unrealistic assumptions about how doctors and patients make important decisions and a mistaken belief that more information inevitably leads to better decision making.
Most criticisms of the New York law have focused on the dearth of evidence about how best to screen for cancer in women with dense breasts. Medical research has established that it is more difficult for mammographers to see tumors in women with dense breasts, and that consequently such women are typically diagnosed with later stage cancers than others. But we do not know whether additional screening tests—such as ultrasound or MRI—will benefit these women. Indeed, recent evidence demonstrates that women with dense breasts, despite being diagnosed with more advanced cancers, have similar survival rates as other women. In addition, we know that ultrasound and MRI often detect suspicious masses that, after painful anxiety-inducing biopsies, turn out to be false alarms. In short, medical experts have no idea what screening strategy is best for women with dense breasts.
How should we make difficult decisions when the medical evidence doesn’t point to an obvious answer? Advocates of the New York law contend that we should get patients more involved in their health care choices. The law encourages such involvement by requiring mammography reports to inform women to “use this information [that they have dense breasts] to talk to your doctor about your own risks for breast cancer.” Further empowering women, the required language continues by informing women to “ask your doctor if more screening tests might be useful, based on your risk.”
The medical profession is still in the midst of adapting to a patient empowerment revolution, in which physicians are slowly—often too slowly—learning that the “right” medical choice is not determined solely by medical facts but, instead, often depends upon patient values. A woman with localized breast cancer, for instance, faces a choice between a mastectomy—an operation that removes the entirety of the affected breast—or a breast conserving lumpectomy accompanied by a course of radiation treatment. This very personal decision hinges on the importance an individual woman places on preserving her breast. No physician should come from on high and tell a woman what to do in this circumstance. The final say should be hers, ideally in close collaboration with loved ones and with understanding clinicians who are attuned to her needs and desires.
Patient empowerment, and shared decision making between doctors and patients, make a great deal of sense in situations where the pros and cons of a patient’s alternatives are well known—such as in the mastectomy versus lumpectomy decision—situations where each treatment has unique advantages and disadvantages and where a patient’s views of the relative merits of these advantages and disadvantages determine which choice is best.
But we are mistaken to turn to patient empowerment to solve dilemmas about how best to screen for cancer in women with dense breasts. New York has mandated that women receive information about their breast density before medical evidence provides any guidance about how to use this information, or even gives an accurate picture of the relative pros and cons of different screening approaches.
The result of this compulsory information is all too clear. Thousands of women, with no evidence of breast cancer, will be made to worry that their mammogram missed a cancer, and that they therefore need more testing. Many of these women will be made anxious by false alarms and unproven tests. Millions of dollars will be spent on expensive, potentially unnecessary imaging.
The best time to promote patient empowerment is when the risks and benefits of healthcare alternatives are well known, and involve tradeoffs where the right choice depends on patients’ values.
The worst time is when patient empowerment will predictably scare people into taking expensive and unproven measures, with little chance of receiving any benefit. It would have been wiser for New York to wait until medical experts had better information about this topic. Other states would be wise not to follow New York’s lead.
**Previously posted on Forbes**