Making Choice an Option
General Hospital, more than 20 cancer centers, and 10 community-based primary-care practices are using "decision aids" (many developed at Dartmouth) to help patients and physicians make collaborative decisions. Doctors at the University of California at San Francisco and at Pennsylvania's Allegheny General Hospital are incorporating decision aids into routine breast-cancer care, while the University of North Carolina is using them to help patients make decisions about colorectal cancer screening.
Most impressively, this spring, Washington became the first state to pass a law endorsing shared decision-making as part of informed consent. Under the new law, a caregiver who uses certified patient decision aids enjoys a higher standard of immunity from malpractice suits claiming a failure to inform patients about the options open to them.
The decision-making process
Dr. Hilary Llewellyn-Thomas, research director for the Dartmouth Center for Shared Decision Making, outlines the stages of a process that she calls decision support. "We don't so much share in the decision-making as share information," she explains, and then "coach" the patient through the process of actually making that decision.
Typically, at the outset, the patient is going to feel what Llewellyn-Thomas describes as "intense decisional conflict"—an extremely uncomfortable state of uncertainty and unease. "Our goal is to reduce that conflict. It's one thing to be worried and concerned—another to be panicked."
Dr. Dale Collins, a Dartmouth reconstructive surgeon who works with breast cancer patients, agrees. "Often, the first reaction is 'Oh, my God, I have cancer—just take it off.' But usually you can get them down off the chandelier," she says.
One way to do this is to bring some order
"A lot of physicians believe that they are already [telling] patients all about risks and benefits," surgeon Jim Weinstein reports. "And I say, 'You can't possibly be—this isn't a five- or ten-minute discussion.' "
to the process. Llewellyn-Thomas describes how a caregiver takes a patient through the four steps of making a decision:
First, you'll work together through information about the risks and benefits of various treatment options, and the caregiver will make sure you understand it.
Second, you'll sort out your own values and priorities.
Third, you'll filter out undue influences from family or friends and evaluate whether you're getting adequate support.
And fourth, you'll put together a reasonable plan of action.
At Dartmouth, patients often begin to assimilate information about their options by taking home a 45-minute video or DVD that outlines the risks and benefits of various treatments and includes testimonials frompatients describing how they used this information to reach a decision.
On the prostate cancer video, one man who chose surgery says: "If something is going to happen, I want it to happen. Fix it and get it over with."
Another explains: "I don't worry too much about uncertainty. All of life is uncertain. You don't know what's around the next corner. In the meantime, I want to enjoy what I have." He opted for watchful waiting.
The breast cancer video features a woman who explains: "I was pretty clear that I didn't want a mastectomy. I didn't want to be a jerk about it, but I didn't want to go that route."
By contrast, another says: "I realized I didn't need it to live because it doesn't make me who I am." She had a mastectomy.
"About 30 percent choose themastectomy," says Collins, who is director of the Comprehensive Breast Program at DHMC. "Preserving the breast is just not that important to them. Some say they didn't like the breast to begin with."
This may be especially true of women who watched their mothers die of breast cancer. "When they are diagnosed, many say, 'It's a relief. I've been waiting for this all my life,'" Collins reports. "Because of the familial risk issues, they are more likely to want the more radical procedure."
The videos come with booklets that provide more information. For example, the breast-cancer booklet advises