When the Doctor’s Away

Image Gallery image by Stuart Bradford / www.theispot.com/artist/sbradford

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Laura Mueller’s cancer was back, and there was no recommended treatment. She didn’t know what to do.

After being diagnosed in 2001 with a rare and aggressive cancer, she underwent chemotherapy, surgery, and eventually a cutting-edge procedure that essentially cooked tumors to try to remove them. In 2007, however, a CT scan showed the fight was not over for the retired schoolteacher. “I felt like I was in the ocean as a non-swimmer,” Mueller says. “I just felt so overwhelmed with the enormous responsibility and journey.”

Her only options were to get a second opinion and investigate clinical trials, an enormously complicated pursuit. Fred Lee, the radiologist who had treated Mueller several times, suggested she do what he does when he wants to know about clinical trials: Call his sister.

Like her brother, Suzanne Lee is a doctor, but she uses her medical training to help clients of the University of Wisconsin–Madison’s Center for Patient Partnerships, which since 2001 has helped nearly 2,000 people negotiate insurance and employment issues, find second opinions and locate clinical trials, and move past the paralysis of a frightening diagnosis. It also provides an unparalleled clinical learning experience for students studying law, medicine, social work, pharmacy, public health, and nursing, who work as patient advocates.

The center operates on a simple principle: People facing life-threatening or serious chronic disease can’t go it alone, but that doesn’t mean they should turn over decision making to doctors. It’s the same principle that its founder, Meg Gaines, learned through her experience with ovarian cancer. When Gaines was sick 16 years ago, some of her friends went through her medical bills to help sort out payment. Others researched developments in treatments. One made a quilt stitched with the handprints of Gaines’ loved ones.

At the center, advocates connected Mueller’s daughter with a specialist at the Dana-Farber Cancer Institute in Boston, who discussed treatment options. Later, the center helped Mueller get into a clinical trial studying the effects of using two FDA-approved drugs together to combat her disease.

One of the hardest aspects, says Gaines, who serves as director of the center, is getting people to understand that “it’s still their life. It’s important for them to make choices that reflect their values in a situation like this.” The center makes sure that student advocates don’t cross the line in their eagerness to help. Advocates don’t give orders; patients are regarded as the captains of their health care team and make their own decisions.

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