Patient navigators help cancer patients move through the health care system
When Peggy Belanger graduated from nursing school in 1972, the job of “patient navigator” didn’t exist. Thanks in part to her extensive background in hospice and home care, and her love of community outreach and education, Belanger became the very first patient navigator for Southern Maine Health Care in 2003. Today there are four.
“Professionally, I felt like I came home when I was hired to start the cancer care program,” Belanger says. Because of her experience, she was asked to help write the job description for the position for which she’d eventually apply and be hired. “When I think back on my nursing career, I was working as a patient navigator before it was called that. I was really given carte blanche at at SMHC; this was the beginning of the cancer care program that exists today.”
If you’re not familiar with the nurse oncology patient navigator program, you aren’t alone. It is specifically designed to help cancer patients and their families navigate their journey from the very first cancer screening to, at times, end-of-life care.
According to the American Medical Association, a patient navigator is someone who provides personal guidance to patients as they move through the health care system. Some may be nurses, others are social workers, administrators or medical assistants. Many navigators are trained nurses who see a way to channel their love for patient care in a different way. “The patient navigator model is used for many disease sites,” says Donna Akerson Green, director of clinical oncology for MaineHealth, of which SMHC is a member hospital. “But the model lends itself so nicely to the oncology program.”
Oncology nurse navigators work at the heart of what is essential to the person with cancer. “To me, it’s a professional nursing advocate, providing resources to patients and families,” Belanger says. Many times these navigators are there right from the beginning of a diagnosis. Cancer patients are often given a dizzying array of treatment suggestions, including surgery, radiation or a wait-and-see option. A navigator offers unbiased recommendations so that a patient can make the best decision for their unique circumstances. Navigators can come through a hospital program or through the American Cancer Society Patient Navigator Program. “The first consult can become so overwhelming very quickly,” Belanger says. “Often patients won’t hear everything the doctor is saying or won’t be able to interpret correctly.”
Belanger offers a sobering example. “A patient said to me once, when she was diagnosed with cancer, that within seconds her life changed,” Belanger says. “She used the analogy that one day she woke up, had been put on a plane without her permission and dropped off in a foreign country. She had no idea where she was, what she was supposed to do, who to talk to and how to speak the language. She said it felt like a nightmare. The navigator takes care of that; takes care of the person that now has a diagnosis that they didn’t ask for, didn’t want and was not prepared for. The navigator helps the patient and their family figure out the who, what, where, when and how.”
Akerson Green stresses the importance for new cancer patients to ask about support opportunities, especially at their initial visit. “Don’t be afraid to ask about what sort of help the system can provide,” she says. “We want to make sure that anyone with a diagnosis has access to the resources they need to make informed decisions.”
“We can’t change the fact that they have a terminal illness. But we can provide them with hope, comfort and caring.”
Of course, navigators can’t fix everything. “We have to remember that we’re working with an individual who has been given a cancer diagnosis, but nothing else in their life stops,” Belanger says. “They’re trying to pay their rent. Trying to find a job. They’re uninsured. Caregivers themselves. As much as navigation fills my heart and soul, the fact is, sometimes it’s heartbreaking. We can’t take care of everything. We can’t change the fact that they have a terminal illness. But we can provide them with hope, comfort and caring.”
It’s important to note that the services provided by a patient navigator are free of charge. For Belanger, proving the return on investment for this complimentary service was a challenge at first. “The biggest problem is trying to document your services and impact to show the benefit,” she says. Physicians, who might have been reluctant to have Belanger meet with their patients in 2003, have become her biggest advocates. “Because I was starting something new I had to prove the value of this non-reimbursable service. SMHC was so willing to put in the money, time and effort in supporting me.”
“The benefits far outweigh the costs of hiring patient navigators,” Akerson Green says. “Patient navigators increase patient satisfaction and expedite their care. In the past few years, MaineHealth has been pushing to get patient navigators into all of their member hospitals.”
Belanger, who grew up in Biddeford and now lives in Kennebunk, retired as a nurse in 2017. A huge proponent of community education and outreach programs, many of which she started in Southern Maine, she continues with that work on a part-time basis. Her early work with the Maine Cancer Consortium got her involved with the Maine Cancer Foundation. She sits on two of their boards, the Maine Cancer Impact Network Leadership Roundtable and the Rehab and Survivorship Task Force. She’s also an avid volunteer with Tri for a Cure, the Maine Cancer Foundation’s signature event.
The impact the MCF has on the state is huge, Belanger says. “The MCF has brought the state together to address the morbidity of cancer. When they expanded their grant funding beyond research and into funding patient services, it had a huge impact on Maine. That’s what touches people.”
The funds raised by the Maine Cancer Foundation (including those from the Tri for a Cure) help support patient navigation and advocacy, with $1.9 million going to those programs across the state since 2015. Maine Cancer Foundation grants are currently funding 19 patient navigators in Maine.
Following Belanger’s first year of volunteering for Tri for a Cure, she was hooked. “There are no words to describe the love, caring, compassion, understanding, support, and positivity one feels when attending or participating in the event,” Belanger says. “I feel like I get way more out of it than I put into it!” She sees it as her way to give back to an organization that has helped so many.
Melanie Brooks loves to write about Maine. Her work has been published in magazines and blogs throughout New England.