Making Choice an Option
Then, with help from a decision-making coach, patients begin to untangle their fears. "This is a very distressing period for patients," explains Dartmouth's Dale Collins. "In addition to giving them decision-making support, we screen them for depression, anxiety, and panic. About 50 percent of our patients hit a clinical threshold [for mentalhealth concerns], so that we intervene and refer them to specialists in these areas."
Patients are also encouraged to talk about whether friends or relatives are bringing inappropriate pressure to bear as the patient goes through the decision-making process. "Often, the other person will think of the pressure as 'encouragement,'" says Hilary Llewellyn-Thomas. The physician can help the patient separate that "support" from his or her own preferences.
The physician also determines whether the patient wants to make the ultimate treatment decision or would prefer that someone else make it. At some point, the patient and the doctor may realize that the patient truly does not want to make the choice. The patient has gotten far enough along in the process to understand what is at stake—and thus is an "informed" rather than a "naive" patient, as Llewellyn-Thomas puts it. In such cases, the patient's choice, based on knowledge of the medical facts and of his or her own feelings, is not to make the final decision.
"The patient has gone through the decisionmaking preparation," Llewellyn-Thomas explains. "But decision support only goes as far as the patient wants to go—without imposing on him or her. We don't have the right to run roughshod over patients. These are people experiencing decision conflict in real time, and we are helping them in real time."
This is what is truly compassionate about Dartmouth's shared decision-making program—that it does not demand, in the end, that the patient take sole responsibility for choosing a treatment.
"[It] helped me . . .
to understand and
calmed my anxiety."
Strict advocates of patient autonomy insist that only the patient can know what he or she wants. If a patient asks for help deciding, the physician is supposed to say, "I don't know, Joe. I'm not you." But many others would argue that such ironclad insistence on patient autonomy constitutes "abandoning" the patient.
The final step in the decision-support process is to help the patient make a feasible plan to act on his or her decision. This means dealing with practical issues such as arranging child care or taking time off work. At this point, the typical patient is confident enough to confront logistical problems. Indeed, research shows that patients who have collaborated in decision-making feel far more secure than those who simply "consented" to whatever their doctor proposed. And they are also far less likely to experience regret after the fact.
Dartmouth's Jim Weinstein, director of the shared decision-making center, says he first became interested in the concept when he participated in a research project at the University of Iowa more than a decade ago. An orthopaedic surgeon, Weinstein was surprised to see that some surgery rates fell by 30% when patients were given more information about their options.
"I didn't feel like they [the patients] were getting the information they needed to make their decisions," he says. "They were talking to me, but maybe that wasn't good enough because I was a surgeon and surgeons do what surgeons do. Maybe they weren't getting a fair shake."
His colleague Jack Wennberg notes that what a doctor defines as "clinically appropriate" can be quite different from what a given patient wants. He points to a study that began by listing the symptoms and pathologies that make a patient an "appropriate" candidate for a knee replacement. Researchers then gave patients—all of whom who fit that bill—full