Helping patients find their way

When doctors diagnosed 60-year-old Randy Marks with cancer about three months ago, he experienced myriad emotions, from fear and sadness to anger and denial.

“It’s easy to get depressed and down when you’re diagnosed with cancer. I was so shocked and had so many questions,” said the otherwise healthy and fit Mission Valley resident. “Nothing or no one can prepare you for something like this.”

But patient navigators are trying.

A relatively new and growing health care field, patient navigators are being hired by an increasing number of hospitals to help guide patients through their difficult medical journey.

It’s their job not only to explain a disease to the patient, answer questions and arrange doctors’ appointments, but also to counsel patients through the terror of a cancer diagnosis and show them how they can survive it. There is no additional charge for the service.

In a health care bureaucracy that can be frustrating for the average patient and overwhelming for those diagnosed with a devastating or chronic illness, patient navigators strive to create that all-important personal connection.

“My role is to ensure that patients don’t get lost in the system,” said Cindy Crist, a nurse practitioner and Marks’ patient navigator at Scripps Cancer Center at Scripps Mercy Hospital in Hillcrest. “When patients are faced with the dreaded ‘C’ word, they freeze and don’t hear anything else. I can defrost them and explain everything, keeping it at their level without all the medical lingo.”

“Cancer has become more complex, creating a morass for the patient,” said Dr. Bill Stanton, a medical oncologist and director of the cancer center at Scripps Mercy. “When someone is diagnosed with cancer … it’s like a tornado whirling you up in the air and depositing you in the next county, and you don’t know where to go or what to do. It’s really hard to navigate it all on your own.”

‘She was my lifeline’

Hospitals across the country, including those in San Diego County, are training nurses, counselors and nonmedical volunteers for this position. Today, nearly every medical center in the county has at least one patient navigator.

Although many navigators are registered nurses, it’s not a prerequisite. Some programs, like the one at Sharp Chula Vista Medical Center, employ a family therapist as the supervising navigator with a staff of three nonmedical volunteer navigators. At Scripps Memorial Hospital Encinitas, the transition navigators are both nurse practitioners. And, although “navigator” is the buzzword most commonly used today, some hospitals use the term “coordinator,” “life specialist” or “concierge.”

However, no matter what their background or what they call themselves, their purpose is the same.

“We’re all here to make it easier for the patient,” said Julia Jaramillo, a volunteer patient navigator at Sharp Chula Vista Medical Center, who knows first hand the difference a navigator can make.

As a breast cancer survivor who experienced fear and confusion after her diagnosis, she said “my navigator got me through it. She made me feel special and like I wasn’t alone.”

Jaramillo was so impressed with the navigation service she received that she became a volunteer navigator, working twice a week helping mostly Spanish-speaking patients.

“I explain things to them and we share stories and different emotions, and I think they feel much better,” she said. “I tell them, ‘Look at me. I’m a breast cancer survivor and I’m OK. You will be OK, too.’ ”

Most cancer treatment regimens involve a maze of appointments, tests and medical professionals, creating what Marks calls “a team sport.”

“Cindy (Crist) was my coach,” he said. “It’s an enormous comfort just to know I can pick up the phone and talk to someone who’s not just qualified to advise me, but who actually cares about me. She was my lifeline.”

Started in NYC

Patient navigation started in 1990 at Harlem Hospital Center in New York, where Dr. Harold Freeman found that low-income women were diagnosed with significantly more stage 3 and stage 4 breast cancer than other women. To reduce health disparities, he sought to improve access to cancer screening and use patient navigators once the diagnosis was made to reduce barriers faced by low-income, African-American women.

His plan seemed to work. The five-year survival rate for these women went from 39 percent in 1986 to 70 percent in 2000.

“Of course the underserved are benefited by patient navigation, but when it comes to being diagnosed with cancer, everyone is underserved,” Stanton said. “That anxiety and not knowing where to go or who to talk to is equally present in all demographics.”

The Harlem Hospital Center’s navigation service is still in existence today and from that pilot program, patient navigation has grown into a nationwide movement funded by hospital revenue, government grants and private donations. Navigation programs encompass some grass-roots programs in addition to those sponsored by nationally recognized organizations.

Widening the net

The National Cancer Institute identified more than 200 cancer care programs around the country that provided patient navigation, while the American Cancer Society initiated more than 100 other navigator programs. None of those programs are in San Diego County.

The Commission on Cancer, part of the American College of Surgeons, issued new standards this year that will require cancer centers to offer patient-navigation services by 2015 to meet accreditation requirements.

Although patient navigators most frequently assist cancer patients, some navigation programs have widened the net and offer service to patients with other illnesses or problems.

At Tri-City Medical Center in Oceanside, patient navigation is performed by clinical care coordinators who help patients in its Cardiovascular Health Institute and Orthopaedic and Spine Institute. At Scripps Memorial Hospital Encinitas, transition navigators focus on those most at risk for readmission — congestive heart failure and total joint replacement patients. Meanwhile, at Rady Children’s Hospital, child life specialists offer navigation services to most young inpatients and their families.

Programs vary widely

Because navigation programs have grown so quickly with little oversight or regulation, the term “patient navigator” has no real agreed-upon definition, and the programs vary widely. With a lack of consistent parameters, medical experts say, it’s difficult to establish best practices and outcome measures.

“It’s hard to measure benchmarks for something like this. But, from what I’ve seen and the patients have told me, (with navigation) there’s less (patient) confusion and anxiety,” said Dr. Anne Wallace, director of the UCSD Moores Cancer Center, which has a patient navigator who works with breast cancer patients. “And, if the patient is happy, I’m way happier.”

Doctors predict that any variability in the duties and expectations of patient navigators will soon change. Since navigation programs must be part of cancer centers before they can be accredited, Stanton believes there will be standards imposed with strict navigation certification requirements, creating more uniformity in the growing field.

“Patient navigators is a valuable tool and an idea whose time has come,” Stanton said. “I’ve seen real emotional improvement (among patients) with navigators. The patient feels like someone has their back.”