Advocates Help Patients Navigate Health Care Maze As health care becomes more and more complicated, some people are turning to patient advocates to help them get through the system. Advocates help coordinate care, accompany patients to doctors' appointments and help negotiate the increasingly complex world of medicine.

Advocates Help Patients Navigate Health Care Maze

Advocates Help Patients Navigate Health Care Maze

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Patient advocate Dianne Savastano checks in with Bob Eckhoff in Brookline, Mass. Savastano started her company, Healthassist, to help patients like Eckhoff coordinate their health care. Richard Knox/NPR hide caption

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Richard Knox/NPR

Patient advocate Dianne Savastano checks in with Bob Eckhoff in Brookline, Mass. Savastano started her company, Healthassist, to help patients like Eckhoff coordinate their health care.

Richard Knox/NPR

Heroic Measures

NPR's Richard Knox describes his struggle making medical decisions for his father in the last weeks of his life.

Betsaida Gutierrez suffers from complicated gastrointestinal problems. She gets help from Dr. Doug Fiero, a semiretired physician and volunteer patient advocate in Boston. Richard Knox/NPR hide caption

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Richard Knox/NPR

Tips For Patients

Dianne Savastano gives suggestions on how to make the most of a doctor visit and keep track of your health care.

Jonathan Fine didn't intend to be a patient advocate. But when an 85-year-old friend wasn't getting what he needed, he couldn't just stand by.

One day, the friend called Fine complaining of severe leg pains.

"Now, this man was stoic by nature," says Fine, a retired physician. "I'd known him for decades. He never complained of pain, so I knew this was big-league."

At the emergency room, doctors thought the man was suffering from bursitis — an inflammation in the hip — or a muscle sprain.

Fine urged more tests. Eventually doctors discovered massive abdominal bleeding. The blood was pressing on the man's spine, causing leg pain.

Fine helped his friend navigate through several additional near-miss episodes. The experience led Fine to get serious about patient advocacy. He and some colleagues founded a volunteer group to help people through the medical maze.

Advocates Can Mean Better Care

Fine says that at one point or another, practically everybody can use an advocate to help navigate the confusing U.S. medical system.

"We don't practice medicine," he says. "We're the advocates. Some of us are physicians, some of us are nurses, others are laypeople, one is a retired judge. But we consult together, work together, meet together, go over cases. The bottom line is we are accessible. We try to relieve unnecessary anxiety and see that [patients'] needs are taken care of adequately, promptly."

One of Fine's other volunteers is a 68-year-old semiretired doctor named Doug Fiero. Fiero's client Betsaida Gutierrez is a tiny, 56-year-old woman with a sunny disposition and a lot of complicated medical problems.

Eighteen months ago, Gutierrez started suffering sharp stomach pains and couldn't eat. When Fiero first saw her, she weighed 77 pounds, down from 125.

"She was very ill at that point, very thin," Fiero says. "She could barely get up and walk. The doctors really didn't have a good idea what was going on."

"I didn't understand it at all," Gutierrez adds. "I just had a sense that I was just wasting, and there was nothing that could be done."

Communication Is Key

She didn't lack for doctors. At one point more than a dozen were puzzling over her diagnosis. But they often didn't talk to each other, and Gutierrez didn't understand what they were telling her.

Fiero's main job has been to keep her caregivers communicating — with each other and with her.

The doctors decided that part of Gutierrez' colon needed to be removed. The surgeons thought they'd fixed the problem, but Fiero knew they hadn't because her health was continuing to fail.

Eventually, with antibiotics and nutritional counseling, Gutierrez was able to start eating again and put back some weight. She says she couldn't have done it without Fiero's help.

"Because I have somebody I trust, somebody who understands who I am, somebody who basically explains it to me 10 times if he has to, together we've been able to do the work," she says.

Finding An Advocate

The problem is, there aren't many groups like Bedside Advocates that provide free advocacy. And it's served only 20 patients over the past three years.

But there are some professionals who are beginning to offer patient advocacy for a fee. Dianne Savastano is a nurse who has set up an advocacy service in the Boston area.

Barbara Porter hired Savastano to be an advocate for her 92-year-old father, Bob Eckhoff, after he cycled in and out of hospitals and nursing homes with infections that weren't caught in time. Eckhoff has diabetes, congestive heart failure, bladder insufficiency, kidney failure and dementia.

"I tell him, 'Dad, you got resurrected,' " Porter says. "He literally did get resurrected. He would either be dead or in a nursing home right now if it wasn't for Dianne."

Eckhoff's primary doctor didn't want to work with Savastano, so she helped assemble another team of caregivers. Eckhoff says he feels well taken care of. "It's been great," he says. "Having somebody to help like this is just ... just wonderful."

Now the goal is to keep Eckhoff out of the hospital when he suffers the next infection. The aim is not to treat him aggressively, but to let him die as peacefully as possible outside a medical institution.

That doesn't happen all by itself. It takes a lot of communication and negotiation. Otherwise, when Eckhoff develops a medical problem, the assisted living facility where he lives would automatically send him to a hospital.

'Getting Health Care Done'

But Savastano's help doesn't come cheap. Porter says she pays about $15,000 a year, "and (she's) more than worth every penny of it."

"I'm expensive. I recognize that I'm expensive," Savastano says. "I would say that if anyone were going to reimburse for such services, you'd have to prove that you were saving a whole lot of money."

That shouldn't be hard to do. Medicare spends near a third of its budget on care during the last year of life. Avoiding just one hospitalization can easily save tens of thousands of dollars.

But Savastano doesn't expect insurers to pay for her services anytime soon.

"It's going to take a long time," she says. "So we have to deal with things as they are. We can't just wait for things to change."

Betsaida Gutierrez isn't waiting. She's been so impressed with Bedside Advocates that she's working as a volunteer patient advocate herself, despite her ongoing health problems.

Her first client is a Hispanic man who suffers from dementia and lung disease. Neither he nor his wife speaks English, and neither can read nor write Spanish.

"One of the great things" about being an advocate, Gutierrez says, is she can see the change when she accompanies her client to an appointment.

The doctors explain things, she says. They order needed tests and pulmonary therapy for her client. Suddenly, the senior doctor comes into the examining room.

"And," she says, "we get health care done."