Patient Navigators Ensure Cancer Patients Get What They Need

Stimulus funding supports more navigators at NCI community hospitals

As a former Navy officer and 30-year police force veteran, Don was trained to anticipate the unexpected. But when his doctor diagnosed him with stage III esophageal cancer two years ago, he said he was lost.

"I thought I could take anything, but when my doctor said "you have cancer,' I froze," said Don Lundin, 64. "For the first time in my life, I was completely unprepared for what I needed to do."

Don's doctor referred him to the Cancer Institute at St. Joseph Medical Center in nearby Towson, Md., a hospital in the NCI Community Cancer Centers Program pilot (NCCCP). In addition to a multidisciplinary team of cancer specialists, each of the 16 NCCCP pilot hospitals across the United States employs patient navigators to help patients through the confusing, often overwhelming next steps following a cancer diagnosis or suspicious finding.  Designated as a cancer center's single point of contact for patients and their families, the patient navigator eases the cancer burden by helping patients access the medical, social, and financial services they need to stay in the healthcare system throughout treatment and follow up.

Government stimulus funding is creating new patient navigator positions at NCCCP cancer centers and at new hospitals when the NCCCP is expanded throughout the United States in 2010.

Below is a glimpse into the lives of patients, their navigators, and the fight against cancer at three NCCCP community cancer centers across the country.

A Sense of Direction, Close to Home - Towson, Maryland

St. Joseph Medical Center was familiar to Don - his second child was born there, and it was close to home. But walking in for the first time with cancer, he was disoriented. 

That first day, Don was met by his cancer treatment team: his oncologist, surgeon, radiologist, chemotherapy nurse and pathologist. At the center of his team was patient navigator Maria Conigliaro, RN, OCN, CHPN.  Maria would become Don's ally, scheduling his multiple physician appointments, ensuring doctors had his latest medical records, investigating clinical trials, and helping maintain his emotional health.

"I didn't know where to begin," said Don.  "Maria quickly became my go-to person.  She was the one with the answers."

Maria became a patient navigator after her father was diagnosed with pancreatic cancer five years ago and she had to manage the complexity of his care on her own. "I was a nurse and still was overwhelmed trying to figure out the logistics of managing my dad's cancer care," she said. "No one should have to go through what I went through, alone."

"There is so much fear and uncertainty with cancer, especially at the beginning," said Maria. "I find that once patients have a plan, they start to feel better. My job is to explain what to expect as soon as possible and help patients gain a sense of control."

'If You Need Me, I'm Here' - Newark, Delaware

Sixty miles from St. Joseph, a similar story unfolds at the Helen F. Graham Cancer Center at Christiana Care in Newark, Del. There, LaTonya Mann, RN, BSN, OCN, CRN, is one of eight patient navigators, each working with about 100 cancer patients at any given time. "We support patients from the time they are diagnosed or have a suspicious finding to the time when they tell us they don't need us any more," said LaTonya.

Keeping patients in the healthcare system throughout treatment and follow up is one of LaTonya's greatest challenges.  Lack of transportation to medical appointments and inability to pay for prescription drugs are two common barriers to successful outcomes, she says.

"I tell my patients, if you have any problems, call me, I can find help," said LaTonya.  Patient navigators at Christiana and other NCCCP cancer centers have extensive ties to the local community, giving them access to special programs and privately donated funds to help cancer patients with logistical and financial problems, including those operated by the American Cancer Society, Cancer Care Connection, and the Wellness Community.

"The community really supports our cancer patients," said LaTonya. "That's one nice part of care at a community hospital."

One of LaTonya's patients, 71-year-old Robert Pietschmann, took his mother to Christiana Care's main hospital every day one summer 25 years ago for treatment of brain cancer. Now he's back at Christiana seeking treatment for his own cancer. "It's a whole lot nicer now," Robert said. "Cancer treatment was more primitive back then. It's advanced a whole lot."

Still, the news was startling. Robert was diagnosed with oropharyngeal cancer, a cancer that forms in tissues at the back of the mouth, including the base of the tongue and the tonsils. "It rocked my world," he said of his diagnosis.

LaTonya stepped in to schedule all of Robert's visits with various head, neck and throat specialists. "Initially, she got everything set up for me," Robert said. Later, he adds, "She took me aside and said, "I'm here for you. Your job is to knock out the cancer, my job is to make sure you're not distracted from taking care of your job."

LaTonya has been a patient navigator for five years. "I really don't know what patients did before there were patient navigators, I really don't," she said. "I know there must have been more missed appointments, late treatments, duplication of appointments, and more uncertainty and confusion," she adds. "I just try to ease the burden for patients as much as I can."

A Comfort When You're Far from Home - Billings, Montana

Two thousand miles from Newark, Del., significant healthcare disparities exist in the region served by the NCCCP's Billings Clinic Cancer Center, in Billings, Mt.  The clinic's patient population comes from a vast geographic area of 207,000 square miles encompassing the state of Montana, the northern half of Wyoming, and the western edge of North Dakota, and lack of access to primary care physicians is widespread.

Scott Sandness, a 52-year-old auto store worker, came to Billings Clinic from Belgrade, Mt., 200 miles away. Lacking health insurance and a regular doctor, Scott went to his local community clinic for a cough that wouldn't go away. When cancer was suspected, he was referred to Billings Clinic, where he was diagnosed with lung cancer and diabetes.

Billings patient navigator Deb White, RN, BSN, CCM, OCN, set up Scott's numerous medical tests. She scheduled all of his initial appointments in one day to spare him multiple round trips. With a six-week treatment plan involving chemotherapy and daily radiation treatments in place, Deb worked with Scott to secure lodging for him in Billings through his church and to ensure that he made it to his appointments and procedures with his pulmonary physician, medical oncologist, thoracic surgeon and radiologist.

Deb also managed the communications between his cancer and diabetes teams, including his oncology dietician and diabetes educator. A critical link in Scott's community of care, Deb ensured that his referring community doctors in Belgrade had all of Scott's scans and medical records for his eventual return home so that they could continue his essential follow-up care.

Now that Scott has finished his treatment at Billings, it is important that he keep in touch with his community clinic for follow-up tests to watch for recurrence or other long-term problems, says Deb. "Follow-up care is critical, but it can be easy for patients to fall off their schedule. Our partners in the community provide a wonderful service in our rural areas in keeping patients in the system," she said.

Back home in Belgrade, Scott says Deb was right there for him throughout his treatment. "Especially for people from out of town, she was essential. I couldn't have handled all of this on my own," he said.

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At NCCCP community cancer centers, highly skilled, multidisciplinary teams of cancer specialists are setting new standards for cancer research and treatment - close to home, in the community - so patients do not have to commute long distances to receive high quality cancer care. The existing NCCCP community cancer centers provide care for more than 27,000 new cancer patients in 16 communities in 14 states each year. ARRA funding is being used to hire more patient navigators —  like Maria, LaTonya and Deb  — at the NCCCP cancer centers, and to expand the entire NCCCP program to additional U.S. cities and towns throughout 2010.