People overwhelmed by illness get help navigating the health care system
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.
At any given time, the center, which charges nothing for help and relies primarily on donations, is assisting 30 to 40 clients with longer-term advocacy and about 10 more with what is known as critical advocacy—cases that can usually be resolved with just a handful of phone calls. Despite being housed in the law school, the center does not litigate. Instead, it uses its status as a well-informed third party to ask questions and push for the answers people might not be able to get on their own.
“A lot of times, there isn’t a great answer to the questions we get called with,” says Emma Hynes, who was inspired to work as a student advocate after her father was diagnosed with stage IV colon cancer. “But a lot of times, the best service we provide is helping clients to feel like they exhausted all possibilities.”
One of Hynes’ clients, Michelle Minder-Massey, is 38 and has lupus and mixed-connective tissue disease, which cause severe, chronic pain. “I went from being superwoman . . . to sometimes I can’t eat or I need help to go to the bathroom,” says Minder-Massey, a former newspaper editor who contacted the center for help obtaining Social Security disability insurance.
For most people facing a serious illness and its impact on loved ones, there is a breaking point, Hynes says: “When they finally say, ‘I need to reach out . . . we need help, we can’t do this alone, navigating the system is too much.’ ”
Minder-Massey’s condition makes it difficult for her to put pen to paper, so Hynes filled out the 14-page disability application form on her behalf and developed an advocacy list, with priorities—including home health care services and family counseling—to deal with the stress of her illness.
“They make me feel like things are going to be OK,” Minder-Massey says. “It is hard emotionally to lose your independence, no matter what age you are. . . . To have somebody like Emma—it makes a world of difference.”
“The word cancer is so overwhelming that it takes over your life,” says Lacinda Smith, who contacted the center after her mother, Marilyn Isenhart, was diagnosed with stage IV melanoma, skin cancer that had spread to other parts of her body.
Their student advocate, Clare O’Connor, researched clinical trials when chemotherapy failed to stop the cancer from spreading. O’Connor, who has a bachelor’s degree in biology, also walked Isenhart and Smith through the trials and the medications involved, something busy physicians don’t always have time to do.
“As a physician, I’d love to be able to do all of the extra legwork for looking for the unique clinical trials that we don’t have access to when a patient’s exhausted other options,” says physician Tom McFarland, who has referred patients to the center and consulted on some cases. “There just aren’t enough hours in the day.”
O’Connor, like other patient advocates, does more than research. Along with Pete Daly, her supervisor at the center and a melanoma survivor, she has been an essential piece of her clients’ support system.
“When we meet with Pete and Clare, we come away with a sense of hope and direction—something that we don’t always get from the medical doctors. They’re great doctors, but we sometimes come out of there feeling overwhelmed and almost a sense of doom,” Smith says.
Being an advocate has convinced O’Connor to apply for medical school, with the goal of becoming a primary care doctor. “This has been the most useful educational experience I’ve had—looking at the complete picture of what happens to a family and an individual when they are diagnosed with a serious disease,” she says. “[It’s what] you don’t see if you focus on one part of it.”
“What I think I learned is, you’re either 100 percent alive or 100 percent dead at any given moment,” says Gaines, whom doctors gave a 5 percent chance of surviving. “What statistics tell you is whether you’re in a great big fight, a medium-sized fight, or a little fight. People win and lose all three, so it just tells you what your fighting mind-set is.
“It tells you what level of risk you’ll take in treatment. It informs things. But I don’t think it’s very helpful on the ultimate question: Will I stay or will I go?”
Excerpted from On Wisconsin (Winter 2009), a quarterly magazine published by the Wisconsin Alumni Association and filled with inquisitive, sharp reporting that its non-alumni audience can also appreciate. www.uwalumni.com/onwisconsin