Patient Navigators: The Cancer Journey's Guiding Lights
August 22, 2017 | by Robert Young
A cancer diagnosis can be one of life’s most stressful and complex experiences — especially for those simultaneously facing other significant challenges. Some patients have no support system or need to travel long distances for treatment. Others deal with debilitating emotional issues or live in communities that lack resources.
That’s where patient navigators come in. Part of the Department of Supportive Care Medicine, they’re charged with providing personalized guidance and support for patents, families and caregivers, from diagnosis to treatment and beyond.
For people like Lorena Gaytan, lead patent navigator at City of Hope, it’s far more than a job — it’s a labor of love.
“We connect our patients to all the resources they need, coordinate all their appointments, help them understand their options and treatments, even assist with financial issues, out-of-town travel and much more,” said Gaytan, a 32-year employee at City of Hope. “We also provide encouragement and emotional support, helping them cope throughout what can be a very stressful time.”
The unsung heroes of health care, patient navigators become a close and essential part of their partner’s journey. At a basic level, they coordinate all the moving parts of multiple appointments with doctors, surgeons and oncologists, which can be especially challenging for older patients, Gaytan said.
“It can be very overwhelming to keep track of everything, especially at a large facility like City of Hope,” she said. “Let’s say a patient needs a CT scan or mammogram. Some departments have a separate scheduler, so I coordinate the scheduling of all appointments and make sure the patient shows up. I’ll even sit in the exam room and help explain what the physician is saying, if needed. It assists the patient as well as the physician.”
Patient navigators also put their charges in touch with services they might not otherwise have access to.
“For instance, some of them need post-mastectomy breast prostheses, which are offered outside City of Hope,” she said.
A lifetime commitment
Beyond taking care of day-to-day logistics, patient navigators forge emotional bonds that often lead to close friendships, Gaytan said. It’s an especially significant relationship for those who have no spouses or family.
“It’s important for them to know they’re not alone, that they don’t have to face this journey by themselves,” she said. “There’s such a close, emotional connection; it’s easy to develop lifelong friendships. I have patients that I’ve known since I became a patient navigator over nine years ago.”
One of Gaytan’s closest patient relationships is with a 71-year-old widow, alone with no surviving family, who suffered from depression and extreme anxiety. Diagnosed in 2005 with Stage 4 metastatic breast cancer, she was very fearful of medical procedures and couldn’t process information during appointments.
Moreover, she had transportation issues and primarily spoke Spanish, compounding her challenges. City of Hope referred her to Gaytan, who coordinated a number of resources, such as a clinical social worker and psychological counseling.
“She had such high anxiety she’d forget what physicians would tell her as soon as she left the examining room,” she said. “I would take notes and give her a final set of notes to take with her. She was so extremely grateful and said she couldn’t have gone through it without a navigator.”
The concept of patient navigators is relatively new, introduced in the early ’90s at Harlem Hospital, according to the American Cancer Society (ACS). Surgical oncologist Harold Freeman felt that far too many women were being diagnosed with late-stage breast cancer due to lack of access to earlier screening, so he launched a program to provide guidance and access for women in medically underserved communities.
“That’s still our mission,” Gaytan said. “We connect patients with hospital resources, community services and organizations like ACS to help with cost of medical treatment, transportation, travel, food, housing and other general assistance services.”
Over the years, the concept spread and evolved at medical centers worldwide. Today, City of Hope’s patient navigator program stands as an internationally recognized model.
Gaytan was recently invited by Taipei Cancer Center to give a symposium entitled “The Role of a Patient Navigator,” using City of Hope’s program as the gold standard for the global health care industry.
“They feel our model is exceptional in that it is patient-centered,” she said. “The National Taiwan University and Taipei Cancer Center are motivated to make practice improvements based on what they’ve learned from our model of care at City of Hope.”
Her presentation included a case study of the 71-year-old widow mentioned earlier. Gaytan shared a heartfelt letter from the patient, a note that means a great deal to Gaytan and embodies the deep connections between navigators and their patients.
“I want you to know how grateful I am for all the love and kindness you offer me,” the patient wrote. “I have no one to help me, but knowing you care for my well-being gives me strength to keep fighting because I have you, my angel.”
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