When it came to charting a path for her breast cancer treatment, Kathy Sabadosa, 43, realized she'd rather preserve a lifestyle of skiing, running, biking, and caring for two young kids than save her figure. After her diagnosis two years ago, Sabadosa's first inclination was to have her whole breast removed and to undergo reconstructive surgery. But after her surgeon drew Sabadosa out about her priorities and how she might handle reconstruction's possible side effects (arm swelling, shoulder problems, scarring around an implant), she decided to skip that step. "My arm and shoulder functioning was much more important to me," says Sabadosa, who lives in Norwich, Vt.
Sabadosa's experience is not typical in American medicine, where more commonly the doctor speaks and the patient listens. Dartmouth-Hitchcock Medical Center, where she was treated, is one of 12 centers around the country testing a formal process of "shared decision making" for a number of conditions that have two or more treatment options—from low back pain and knee or hip osteoarthritis to uterine fibroids and coronary artery disease. By digesting educational DVDs and other literature, Sabadosa got a clear and unbiased explanation of the risks and benefits of lumpectomy, mastectomy, radiation, and chemotherapy. Specially trained counselors helped her identify her feelings about living with the consequences of each option. Her doctors made recommendations guided by Sabadosa's preferences, which they talked through on multiple occasions. And Sabadosa was given ample time to mull over her choices.
Misinformed. By contrast, here's what people more typically do after a diagnosis: Gather up a hodgepodge of information—online and by talking to friends—that is often incomplete, inaccurate, and incomprehensible. "Generally speaking, the perception of chances of good and bad outcomes is very poor," says Annette O'Connor, a researcher at the University of Ottawa in Canada who has long studied how best to get patients informed. A patient may think a treatment is going to cure him when it might only lessen symptoms, for example, or that the risks are more serious than they actually are. The Foundation for Informed Medical Decision Making (www.informedmedicaldecisions.org), a nonprofit patient advocacy group that is supporting the 12 centers, cites research showing that most people can't answer even basic questions about their illnesses. Often, they simply defer to their physician. But doctors rarely give comprehensive information. Time is short, they often have biases—surgery and rehab for that torn ligament beats trying rest, exercise, or physical therapy, say—and many assume patients don't want the burden of overwhelming information.
And decades of research from the Dartmouth Atlas Project, which analyzes how medicine is practiced across the country, has shown that the treatments a person gets are influenced, surprisingly, by local clinicians' practice patterns. So, depending where you live, you could be many times more likely to undergo aggressive treatment—for example, heart bypass surgery or stenting for diagnosed coronary artery disease even when a more conservative approach of lifestyle changes plus medications would have been a legitimate option. "Patients, when well informed, will make different decisions than doctors—with no adverse outcomes, and maybe better outcomes," says James Weinstein, who is chair of orthopedic surgery at Dartmouth-Hitchcock and its medical director of shared decision making. Patients also tend to choose more conservative—and often cheaper—treatments when well informed. Indeed, health reform may usher in an era of shared decision making. Sen. Ron Wyden, an Oregon Democrat, has pitched a pilot program to implement it for the 11 conditions that rack up 40 percent of Medicare spending on inpatient surgery, including early-stage prostate and breast cancers and osteoarthritis of the knee, hip, and spine. Doing so, according to an estimate by the Lewin Group, a healthcare consulting firm, could save $4 billion in 2010.
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.