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Navigating the Maze

Maureen Larkin, for HealthLeaders Magazine, November 14, 2008
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Advocates can help patients better understand their treatment options—and help hospitals get patients out the door faster.

You're not feeling well. Doctors have just discovered a tumor on your lung, and the word carcinoma was used in your diagnosis. Chemotherapy, radiation, and surgery have all been mentioned as possible treatment options, but your head is filled with a million questions and "what-ifs" as you consider what treatment course to take. You know your doctor's time is limited, so you visit with him quickly—but you still have questions about what your diagnosis means and your treatment options. You wish someone understood what you're going through and could help you weed through the options.

This scenario is hypothetical, but it's probably not far from one that a patient at your hospital is experiencing right now. Being diagnosed with a potentially fatal illness causes great emotional stress for patients, and often they feel like they're caught in a maze with no help from their physicians about how to get out. A growing number of healthcare organizations are turning to patient advocates—or navigators—to help patients make sure they receive the best treatment options available.

At the Penrose Cancer Center in Colorado Springs, CO, for example, patients who receive a cancer diagnosis are contacted by a patient navigator in a program that partners with the American Cancer Society. "The first thing [patients] say is, 'I don't know what questions to ask,'" says Mary Alice Browning, RN, clinical specialist and cancer care coordinator at Penrose. "No one studies cancer until they or someone they love is diagnosed."

Plenty of physicians are already willing to address patients' broad spectrum of concerns, but many patients are afraid of wasting their doctor's time and don't ask the questions they've been pondering, says Browning. A patient navigator can help answer patients' questions, help them figure out the myths and realities of treatment, and help them decide which treatment option is best. "Some people are still under the mistaken idea that every patient will receive chemotherapy, or that every diagnosis is a death sentence," Browning says. "Others have heard that surgery will spread cancer, and they're sometimes afraid to approach that with their healthcare provider."

Problem solvers
At Vanderbilt University Medical Center in Nashville, patient advocates get involved in situations where patients are not happy about a particular experience with the hospital or a provider, says Jodi Fawcett, director of patient affairs for the 832-licensed-bed academic medical center. "Any time a patient is not satisfied, their complaint should be directed to the office of patient affairs," Fawcett says.

Whether it's a patient who decides they want to talk about their cancer treatment experience three years after they've gone into remission or someone who had a bad first encounter with a specialist, patient advocates will step in. "We spend time with that patient hearing their story—what are the patient's expectations, what can we do to help," she says. "The patient advocate then begins working on the best way to communicate the patient's voice to the right people in the medical system."

Fawcett says advocates can help patients sift through sometimes conflicting messages from multiple clinicians.

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