Health reform brings renewed attention to 'shared decision' programs

One of the changes the federal health reform law calls for programs that increase the collaboration between physicians and patients through what's called, "shared decision-making," and it's already playing out at a clinic in Stillwater.

This past January, Jill Hey, 43, of Hudson, Wisconsin found out that she had breast cancer.

"When you get that kind of information your world kind of stops, but everybody else keeps moving around you," Hudson said.

Emotionally raw and her thoughts a blur, Hey, nonetheless, had important choices to make. Should she get a lumpectomy, radiation, a mastectomy, breast reconstruction? In her case, there was no one course of treatment that was medically better than the others; it came down to her personal preference. But to make an informed choice Hey needed help.

"The challenge with medicine is that everything gets crammed into a 15-minute visit," said Dr. Larry Morrissey, a physician at the Stillwater Medical Group.

Morrissey heads the Minnesota Shared Decision Making Collaborative. The collaboration includes representatives from health clinics, insurance companies and the department of health in evaluating shared decision making.

The approach involves a lot of different methods all with one goal -- to give patients a better understanding of their condition and their choices.

"What we've done is to say we're going to provide you with a decision aid, have a nurse explain to you this is what information you need to learn about," Morrissey said. "And then you're going to meet with your doctor and talk about what the choices are."

For Jill Hey that meant a day after her diagnosis she met with the nurse who had given her the news, who was now assigned to shepherd her through the course of her care.

Hey also got booklets and DVDs about the pros and cons of different breast cancer treatments. The hope is that patients like Hey will be able to learn some basics by themselves and ask more informed questions of their physicians.

But for Hey, the DVDs and other information were just upsetting at first.

"I cried after I watched it because I felt like 'oh my God not only am I going to lose my breast, I'm going to be scarred,'" she said. "I'm going to be reminded every single day the rest of my life."

But after the initial shock wore off, Hey said she started thinking about what kind of treatment was best for her. She decided on a mastectomy for peace of mind about the cancer.

"Because of that DVD it educated me enough that I went into my plastic surgeon I had said to him, 'this is how I feel,'" Hey said. "I feel like I'm still young, still wear bathing suits, first and foremost is to get the cancer out of my body; second, how pretty can we make it."

Many doctors may say that they already share decisions with their patients, but this concept, however is a bit more formalized with an arsenal of brochures and informational DVDs. One of the central goals of the approach is to help patients understand the trade-offs in the choices they face. It's not for all medical decisions though, only where there may not be a single clear choice.

It's been used in helping patients choose treatments for breast cancer, prostate cancer, as well as deciding whether to test a fetus for Down syndrome.

Shared decision making may seem like a way to take some of the load off a patient's doctor, but Glyn Elwyn, a public health researcher at Cardiff University, Wales and a leading authority on shared decision making, said it's not.

"It's much easier for doctors to say, 'you've got condition B, we're going to do Y and off you go and you're going to take this surgery.' It's cut and dried and it's over," Elwyn said. "So explaining options and supporting people to deliberate their own choices is a much more complicated task."

Despite the added complication, Elwyn said patients feel more confident in their decisions with shared decision making. He said policy makers are excited about its potential to reduce health costs. He said not only do patients make better-informed decisions, they sometimes choose less aggressive measures, which can also be less costly.

Although shared decision making has been around for 10 years, it's likely to become more common because the Health Reform Law is providing funding for clinics to try and evaluate the practice.

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Examples of shared decision-making aids:

- AmnioDex

- AmnioDex Weighting Tool

- AmnioDex Stories

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