The new approach doesn't take the doctor's opinion out of the equation; rather, it gives weight to the patient's values when there's a choice. For example, surgery to treat an enlarged prostate—a common complaint of older men that causes frequent urination—may dramatically improve symptoms, but it also causes impotence in 10 percent of men, incontinence in 3 percent, and retrograde ejaculation, or dry climax, in 65 percent. When a man and his doctor share the decision making, the discussion focuses on teasing out his values: How bothersome are your symptoms? Are you at a time in life where the risk of impotence really troubles you? How do you feel about grappling with incontinence?
The collaboration works best if a clinician genuinely has bought into the process and "prescribes" the DVDs and booklets. But patients can do the driving if they choose. O'Connor has evaluated and rated more than 200 decision-aid tools, many of them online, that address medical choices, from getting a flu vaccine to having surgery for obesity (http://decisionaid.ohri.ca/AZinvent.php). Besides risk-benefit information, you might be invited to probe your feelings about, say, starting a statin for high cholesterol: How important is it to you to give diet and exercise a go before starting a lifelong drug? How worried are you about the medication's side effects—or having a heart attack? Some of the tools offer a printable summary of which way you're leaning, which can inform a conversation with your doctor. O'Connor suggests asking your physician's group practice for a doctor who will cooperate. Your insurance plan may also offer decision-aid tools; call after a new diagnosis to find out.
Buy time. At the very least, buy time to process the diagnosis and get your questions about treatment answered. Where shared decision making is not the norm, doctors "may want to get moving because they don't want you to fall through the cracks. But most situations are not a medical emergency," argues Jeff Belkora, director of decision services at the University of California, San Francisco Breast Care Center, one of the 12 test sites. Get questions to the doctor ahead of your appointment, he suggests. And ask in advance if you can tape-record the conversation, since people notoriously retain very little in these circumstances. More general direction on how to get informed and involved in the face of a new diagnosis can be found at www.guidesmith.org, a site developed by Belkora.
The bottom line: You can hold out for care that fits your life. Sabadosa was young, healthy, free of risk factors, and "absolutely floored" at the news she had breast cancer. Opting out of reconstruction, she says, was not a common choice in her patient support group. But by taking her time, getting informed, and working with clinicians who honored her values, she came to a decision that still feels right.