Cancer navigators offer patients with gastrointestional stromal tumors guidance as they find their way through a cancer journey.
By Sally Abrahms
In 1992 Anne McNerney was an insurance company executive and the mother of four children under the age of five, including two-year-old twins. One day she found herself racing between hospitals: her husband was in one with a broken neck from a work accident; her son was in another with a serious lung disease. “I said, ‘What else could go wrong?’” recalls Anne. “Two months later I got the answer.”
Anne was diagnosed with breast cancer. She received six different types of chemotherapy and underwent surgery and radiation. Gradually, her husband and son improved, and, “as my hair started to grow back, my life grew back, too,” she says. After returning to work, Anne decided that what she really wanted was to stay home with the kids. She resigned from her job to be a full-time mom.
But after a while she became antsy. Anne’s husband suggested that she volunteer at the hospital in Baltimore where she had been treated. “I volunteered so much the staff said, ‘Give this woman a job—she’s here all the time!’” Anne says.
Four years ago Anne took that job. She now works as a patient navigator in a rapidly growing field composed of social workers, nurses, and lay people—many of whom are cancer survivors themselves—who are advocates for newly diagnosed cancer patients (or others with ongoing, serious medical conditions). Navigators steer patients through the healthcare maze by connecting them to services and resources in the hospital and the local community, coordinating treatment schedules, expediting medical appointments, explaining issues, coaching them on questions to ask the doctor, arranging transportation to treatments if necessary, locating support groups, demystifying health insurance and prescription reimbursement, and acting as a sympathetic and empowering ear.
“It’s difficult to deal with all these issues when you’re well, but when you’re sick you don’t want to lift your head off the pillow much less make a bunch of calls or line up help,” says Anne, 55, who works at the University of Maryland Marlene and Stewart Greenebaum Cancer Center. “Every patient has a story, and with that comes individual needs they have.”
Understanding the Patient Perspective
Loretta Honeycutt, 46, who has leukemia, has benefited first-hand from Anne’s help. “Anne takes away that clinical side,” Loretta says. “You look at her, and she’s a survivor. She has the ability to understand what you’re feeling, whether it’s anger, anxiety, or frustration.” One day Loretta showed up at the hospital after she lost her hair. “In Anne’s office were beautiful wigs, and one just happened to be a perfect match,” says the brunette, who chose one that had bangs and a little flip at the ends. Anne also contacted the Leukemia Society of America on Loretta’s behalf and told her about grant money that pays highway tolls so that Loretta could get to the hospital for her treatments, and introduced her to Look Good…Feel Better, an American Cancer Society (ACS) program that brought in a professional makeup artist to teach her to apply makeup and style her wig.
Patient navigators like Anne who are themselves survivors provide a powerful dose of hope to patients. Charlene Smith, a radiation therapist and patient navigator at St. Joseph’s Medical Center in Stockton, California, is an 18-year breast cancer survivor. She works to ease the anxiety that breast cancer patients may experience upon diagnosis. Patients are often “freaked out and don’t know what to do,” Charlene says. “They are scared to death.” By providing resources and the perspective of a longtime survivor, Charlene offers a unique toolkit to the patients she counsels. “We have a library and offer literature, and we talk to them. But what they get the most out of the service is the knowledge that someone like me survived. I tell them my babies were ages one and two when I was diagnosed, that I never thought I’d see them get into kindergarten, and now they have graduated from college. It is a relief to newly diagnosed patients.”
Also a relief is the continuing support and direction that navigators offer as patients consider treatment options and process medical information—all of which can be confusing. Many people turn to the Internet first, which can result in information overload. They wind up with lots of questions, but often don’t know where to go to find answers. This is where a navigator can again ease the burden: “There are a lot of resources,” says Charlene, “but patients have to know they exist.”
Patient Navigators: The Back Story
The concept of patient navigators was conceived in 1990 by Dr. Harold P. Freeman, past national president of the ACS and founder and president of the Ralph Lauren Center for Cancer Care and Prevention, as a way to help low-income, immigrant, and other underserved groups get the best care—and thus, the best outcome—possible. Typically, the ACS trains navigators in a three-day course that involves learning about the disease, effective ways to communicate with patients, and obstacles a patient may face in the hospital system or at home. Navigators sometimes also attend other training workshops, conferences with fellow navigators and professionals, and community meetings.
Some navigators are nurses; others are healthcare professionals such as physicians and social workers; and still others are lay people, many of whom are cancer survivors, who undergo training to prepare them for their role. Patient navigator Carol Spitz has a master of education degree in counseling and a master of social work degree and has attended patient navigator training sessions, but she says she has learned a lot from the patients themselves: “Each patient has taught me enormously about social problems, health disparities, survivorship, and end-of-life issues,” Carol says.
The American Cancer Society sponsors 140 patient navigator programs in U.S. cancer facilities; and the National Cancer Institute, which collaborates with the ACS, is in the midst of a five-year Patient Navigator Research Program at nine cancer sites (Boston; Chicago; Columbus, Ohio; Denver; Portland, Oregon; Rochester, New York; San Antonio; Tampa; and Washington, D.C.). All of these programs contribute to the hundreds of patient navigator programs that exist across the country—many specifically geared toward cancer patients and some toward diseases other than cancer. Navigator salaries are paid by the ACS, the hospitals themselves, federal grants, or a combination of the three.
A handful of private Cancer Navigation Consultants™ also exists, including New York City–based navigator Kathy Gurland, who started her own business, Peg’s Group, in honor of her sister, Peggy. Clients pay an hourly fee for Peg’s Group services, which range from one-on-one counseling (in person, via e-mail, or by telephone) to help with doctor appointments and translating medical information to providing personalized action plans and access to resources.
The Benefit to Patients
In today’s cutthroat healthcare climate, where policymakers and hospitals are scrambling for ways to cut costs and reduce readmissions, the patient navigator concept is particularly appealing. So far the results look promising. Radiation oncologist Lynette Hart, MD, who works with Charlene Smith in the patient navigation program at St. Joseph’s Medical Center, says, “The Cancer Navigator program functions as an important link in the chain of cancer patient care. Because they lack education or computer skills, some cancer patients don’t advocate for themselves. They can fall through the cracks and can suffer as a result by not receiving the appropriate information, evaluation, therapy, and support. These can lead to a poorer outcome in terms of cancer cure or survival.” A 2003 study at Harlem Hospital, which had the first patient navigator program in the country in 1990, found that breast cancer survival there rose from 39 percent to 70 percent after the patient navigation program was launched.
When Rebecca Kay Chafin, 50, learned in 2005 that she had Stage IV breast cancer, the Temple, Texas, resident was told she would need to see several specialists, including an oncologist, a radiologist, and a social worker. “I was totally undone,” says Rebecca, a former pediatric nurse. “The report said the cancer had metastasized into my abdominal cavity, my liver, and my spleen. And then I was told I had to wait three weeks to see a doctor! I couldn’t possibly wait that long, knowing what I knew.” Rebecca picked up the phone and called her patient navigator. “The patient navigator said, ‘Give me 15 minutes, and I will call you back.’ I thought, Yeah, right!” recalls Rebecca. “But she called me right back and said, ‘Can you be here in 35 minutes?’ I had an appointment that morning with an oncologist. She also set up a radiation consult for that day, and I saw a social worker. She was a godsend! Those first few months everything was chaos. I just couldn’t believe what had happened. The patient navigator was really important. She arranged all my appointments, and I would see her in the hospital halls. She was on the ball, very caring, and very calm.”
Having someone who cares can make all the difference. It clearly did for one of navigator Anne McNerney’s lung cancer patients. Conventional treatments had failed, and the unemployed plumber was offered access to a clinical trial. But he didn’t have a telephone, and the hospital needed to be in touch with him; it was required to be a part of the trial. Anne and a nurse in radiation arranged for him to get a prepaid cell phone. “A year later he comes through the clinic, and he’s fine,” remembers Anne. “I never expected him to make it. He was working again, and he had brought the phone back so we could give it to someone else. That $100 prepaid phone was a pivotal moment for the man. He was at such a low point in his life and thought, Someone cares enough to get this for me, and maybe I can do this. That was an aha moment, and it inspired me to think, It’s not just about the medicine, it’s about hope, which comes in many forms. In many ways a patient navigator is a hope coach. I go home at the end of the day and feel as if I’ve really made a difference in someone’s life.”
Find a patient navigator near you:
- Contact a local hospital’s Patient Relations Department.
- Call the American Cancer Society at (800) ACS-2345 [800-227-2345] and ask about a patient navigator program in your area.
- Google “patient navigators” or “cancer navigators” plus your location.
. Freeman, HP. Patient navigation: a community based strategy to reduce cancer disparities. Journal of Urban Health. 2006;83(2):139–41.