To Guide and to Protect: Patient Navigators

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THE PATIENT WAS scheduled to begin radiation treatment for endometrial cancer, but was consistently a no-show. Something was going on, but the doctor didn't know what.

That's when the physician enlisted Chelsea Phelps, 25, a patient navigator with the American Cancer Society and George Washington University Medical Center. Phelps tried a simple fix: She called the woman and asked what was wrong.

The only reason she wasn't coming in," says Phelps, "was because she was terrified." After her initial surgery, the patient "just couldn't bring herself to start this again." Over several phone calls they discussed her concerns and, with Phelps' offer to keep her company in the waiting room, she got the patient to come in — and to keep coming in — for her treatment.

Patient navigators have emerged in recent years as a potential lifeline for people who are thrust into a complex and harried healthcare structure. Combine that with problems such as lack of insurance or education or emotional support, and the mind arrives at a word that navigators seem to use a lot to describe the patient experience: overwhelming.

The concept was launched in 1990 at New York's Harlem Hospital Center by surgeon Harold Freeman. As president of the American Cancer Society the year before, Freeman had heard the poor testify in hearings about the myriad barriers they faced in accessing cancer screenings, diagnoses and treatment. It jibed with what he had seen for years at his own hospital: A striking percentage of poor, mostly black women who were showing up with late-stage breast cancer and dying at a high rate.

Freeman, 76, now the president and founder of the Ralph Lauren Center for Cancer Care and Prevention in New York, recalls that at times he saw disease so advanced "you couldn't really see the breast, all you could see was the cancer."

He started the navigation program to help patients make timely and fluid transitions from screening to diagnosis and treatment.

"The concept of patient navigation has taken the country by storm in the last five years," says Steven Patierno, executive director of the George Washington University Cancer Institute. "You would be hard-pressed to find a new idea in healthcare that has inserted itself and taken hold more rapidly and dramatically than patient navigation."

Patierno is leading the D.C. arm of a multi-center study for the National Cancer Institute to measure the efficacy of navigators. Meantime, Freeman estimates there are already at least 2,000 navigator programs nationwide. While many still focus on cancer patients, expanded programs and clinical trials are also putting navigators into contact with those suffering from chronic conditions ranging from diabetes to asthma and HIV/AIDS.

Their particular duties vary by program, but in general navigators serve as a patient's gateway to the healthcare system and as a bridge between the departments and services involved in their care. At the start, they assess patients' apprehensions — like fear or deep-seeded medical mistrust — and other physical and emotional barriers to treatment, then work to erase them. 

For some, this means connecting patients to resources to confront a lack of health insurance, or loss of income that could put their home in jeopardy, or arranging transportation for hospital visits, or child-care during appointments. Navigators also provide palatable information on conditions and treatments, and link patients to support groups and other social services.

Many offer an ear to bend or a shoulder to lean on. "We provide the hand-holding that people need sometimes," says Myrtle Washington, 62, a breast cancer survivor and a navigator for the nonprofit Smith Farm Center for Healing and the Arts in Northwest D.C. Patients, she says, can count on her to personally pick them up for an appointment and hold their hand in the doctor's office, if it means the difference between them showing up or not.

Many navigators like Raul Hernandez, 44, who works with HIV/AIDS patients at the nonprofit La Clinica Del Pueblo in Northwest D.C., stay in contact with patients periodically to ensure compliance with medications and appointments. When newly diagnosed patients leave in denial or seek re-testing elsewhere (hoping that in one of those places they'll get a negative result), Hernandez stays in touch to let them know the door at La Clinica is open.

Navigators' backgrounds run the gamut — some come from nursing or social work while others bring only a capacity to learn and a wealth of life experience.

"I look at a navigator as being a Sherpa for someone," says Carole O'Toole, 54, manager of the patient navigation program at Smith Farm Center, which works primarily with cancer patients. "Everyone has to climb the mountain alone when they're dealing with cancer, but the Sherpa is there to help carry the bags and point you in the right direction."

O'Toole arrived at navigation after beating inflammatory breast cancer 16 years ago. "During that whole experience," she says, "I kept saying to myself, 'There's got to be an easier way to do this,' and felt committed after I recovered from my cancer to do that for other people."

At D.C.'s National Rehabilitation Hospital, navigator Oticia Harris, who is working on a stroke study, had been plucked from behind the security desk, where doctors had noticed her congeniality.

Elsewhere at the same hospital, Shannon Minnick, 39, works as a navigator in a study that tests the impact of navigation on patients with spinal cord injuries as they move through rehab and back into the community. Minnick, who has an associate's degree in social work, broke her neck in a car accident in 1991 and is now quadriplegic.

Raul Hernandez, at La Clinica Del Pueblo, has a degree in economics.

A singular, industry-wide certification has not yet been established, but a handful of organizations now offer open training in navigation. Among them: the Smith Farm Center, which has a training in April; GW's Center for the Advancement of Cancer Survivorship, Navigation and Policy has a session this fall; and the Harold P. Freeman Patient Navigation Institute in New York has sessions monthly.

Like many jobs in medicine, though, navigation can be one of extremes.

When a patient dies despite your efforts, says Myrtle Washington of Smith Farm Center, "you know it's not your fault, but you've made a friend and they're gone. That's the worst. And we've lost a number of people."

But there also are momentous victories — linking a family to aid that keeps the heat on at home, gaining the trust of a wary patient or seeing the promise of those who recover.

Shannon Minnick, the spinal cord injury navigator at National Rehabilitation Hospital, fought back tears as she spoke about the progress of young patients she's guided back into active lives of accessible schools, sports and travel. "When I had my accident it took years for me to realize that there was something that I could do," she says. "And if I had someone to say, 'Shannon, go back to school ...'" she pauses. "It just took so many years and that's time that these guys don't have to wait."

Written by Express contributor Danny Freedman
Photos by Jason Hornick