Getting a diagnosis of cancer is devastating enough on its own. But as
anyone who has tackled cancer or any serious disease knows, that’s
just the beginning. The steps toward treatment—making decisions,
scheduling and keeping appointments, dealing with insurance companies,
seeking a second opinion, just showing up—can be almost as overwhelming
as the disease itself.
This is where the
Torrance Memorial Medical Center Hunt Cancer Institute Nurse Navigators program steps in. Nurse navigators guide patients along the path to recovery by
helping them make informed medical decisions and assisting with scheduling
multiple doctors’ appointments and tests. Navigators also provide
help when it comes to: coping with a patient’s prognosis, making
sure they stay on track with their treatment plans, running interference
on insurance issues and offering emotional support. All this is at no
additional charge to patients.
“I see myself as a coordinator of care for patients when they are
not in the hospital,” says Torrance Memorial oncology nurse navigator
(NN) Melissa Gunlund, MSN, RN. “When they’re admitted for
surgery, for instance, the doctors and nurses on staff take care of them.
But when they are outpatients, they have to deal with all these different
doctors, tests and treatments on their own. It does get overwhelming.
I make sure they understand why they’re seeing each doctor or getting
each test and streamline the process as much as I can. And they know there
is one person who they can call and ask a question.”
This kind of access to answers is invaluable to patients, as Evelyn V.
Calip, BSN, RN, Hunt Cancer Institute oncology nurse navigator and breast
cancer survivor herself knows. Every time a patient sees her she understands
she is benefiting them in three crucial areas:
EDUCATION.
“We explain a diagnosis and treatment plan,” Calip says. “We
let patients know what to expect before, during and after surgery, and
what it will be like in the hospital. I bring in patients who have been
through it to talk to them.”
COORDINATION OF PATIENT APPOINTMENTS.
“I’ve been known to make a phone call to speed up booking,”
Calip says.
ASSESSING THE BARRIERS TO THEIR CARE.
This includes financial, transportation and language barriers. “We
have so many languages spoken here at the hospital, we find someone who
can translate or we can use WOW (Workstation On Wheels) language translator.
We can arrange a Torrance Memorial van for transportation. We can even
find a way to help them financially if they are underinsured.”
Calip has been a registered nurse since 1982, and her nursing experience
surely helps her do her job. But her experience as a breast cancer patient—at
Torrance Memorial Hunt Cancer Institute, no less—has been just as important. “I started a support
group called Evelyn’s Breast Friends Forever and just became passionate
about helping women who were going through what I did. When one of the
breast nurse navigators left, I heard about the opening, came to observe
and just fell in love with it.”
The History of Nurse Navigators
The idea of nurse navigating was pioneered in 1990 by Harold P. Freeman,
MD, a doctor at Harlem Hospital in New York City, to help medically underserved
patients overcome obstacles to cancer diagnoses and treatment. This included
paying their bills, finding transportation, arranging child care, making
appointments, helping request sick leave and responding to emotional fallout.
At the time a disproportionate number of the poor in New York were dying
from cancer and Dr. Freeman’s research indicated a need for caring
professionals to help uninsured and underinsured patients get the care
and follow-up they needed to survive. Dr. Freeman, a former president
of the American Cancer Society, believed no one with cancer should spend
more time fighting their way through the system than fighting the disease.
And while the programs were started to assist low-income patients, care
for illnesses like cancer can be so complicated that all patients, regardless
of income or education level, can benefit from navigation. In fact, under
a 2015 requirement for accreditation by the American College of Surgeons
Commission on Cancer, cancer centers must provide patient-navigation services
to their patients.
Dr. Freeman went on to develop training courses and still teaches them
today. Breast health nurse navigator Linda Maynor-Gardea, RN, CN-BN, attended
the National Consortium of Breast Centers’ (NCBC) course and was
taught by Dr. Freeman himself. “He’s in his mid-of income,
race or age. A lot of people don’t know about this, and I want to
make sure everyone gets this care.” She says her own breast cancer
experience allows her to communicate to cancer patients that “It’s
not a death sentence. I had Stage III breast cancer and now I’m
disease-free. My focus is to educate people that this is treatable; they
don’t have to have so much fear, and I can give them hope.”
A Patient's Perspective
A calming and comforting effect seems to be a universal trait among nurse
navigators. Mary Bass, 79, came to Torrance Memorial Hunt Cancer Institute
with a diagnosis of lung cancer.
“I met Melissa [Gunlund] about two weeks after my diagnosis,”
Bass says. “She called me and told me she was a nurse navigator
and would be following me through my treatment.
“It was such a relief to know there was one person I could call with
a question—and believe me, I called a lot—and she always got
back to me. She is very patient and lets me talk until I run out of things
to say!” Bass adds, “When you get off the phone, you feel
so calm and relieved.”
Training to Navigate
Many of the nurse navigators served as registered nurses for years before
discovering this niche of care and that was certainly true of Torrance
Memorial’s newest nurse navigator, Pamela Rosapapan, RN, BSN, who
heads up the newly formed Hunt Cancer Institute GI/HepatoPancreaticoBiliary
navigation program.
“When you’ve been in the same department for a long time,”
Rosapapan explains, “you want to venture and grow as an oncology
nurse. What I did at Kaiser for years was to coordinate the care of patients
getting chemo, help those at home who were having problems and take care
of the infusions. I was their resource.”
“I learned it would be 2017 or 2018 before Kaiser started its oncology
nurse navigator program, so when I got a call to come to Torrance Memorial,
I was intrigued. It’s a broader look at oncology and I figured it
was time I stepped up. As time went by, the idea has really grown on me.
Now I’m in love with the role.”
Oncology nurses seem particularly suited for the job because they see firsthand
how challenging the journey from prediagnosis to recovery can be. In fact,
apart from the workshops, conferences and certifications run by the NCBC,
the Academy of Oncology Nurse and Patient Navigators, and the Harold P.
Freeman Patient Navigation Institute, most of the training is on the job.
“I shadowed the other navigators,” says Rosapapan. “And
we all go to tumor board every week. That’s where I learned how
to present cases and advocate for patients.”
Tumor board is Torrance Memorial Hunt Cancer Institute’s twice-weekly
meeting of cancer specialists: oncologists, surgeons, radiologists, pathologists,
radiation oncologists and nurse navigators—everyone who is working
with a cancer patient.
“It’s a gathering of information and education,” Rosapapan
says. “And every month our director meets with all of the nurse
navigators to help guide us through, to ensure the navigators are taken
Next Steps
The ultimate success for a patient, of course, is surviving. And Torrance
Memorial is uniquely equipped to lead a patient through that phase as
well. Cancer survivorship coordinator Miriam Sleven, RN, MS, OCN, segues
patients as they complete treatment and move forward with their lives.
“I believe that every nurse navigates patients,” Sleven says.
“Whether at the bedside, answering questions, discussing next steps—you
are always navigating.”
In 2005 the Institutes of Medicine published the study “Lost in Transition:
From Cancer Patient to Cancer Survivor” and found the country’s
10 million cancer survivors were not getting explicit guidance from their
oncologists and their primary care physicians were not familiar enough
with the consequences of cancer to provide much help either. In its report
the committee outlined recommendations for a plan of survivorship care.
Following that report, Sleven, who has been a nurse since 1976 and began
working in oncology in 1980, developed Torrance Memorial’s cancer
survivorship program, which started with breast cancer survivors and comprises
a host of resources including supportgroups, physical therapy and rehab,
counseling, and a care package filled with tools and recommendations.
“We talked to women who had completed treatment, and when we understood
what was happening with them—what their issues and needs were—we
were able to create customized action plans to help them cope with issues
such as insomnia, menopausal symptoms and depression,” she explains.
“One of my most important roles now is as a coach. I help survivors
practice talking to their doctors and asking questions so they will get
the answers they need—that, and serving as their advocate.
“Sometimes that means getting through to the right person and finding
resources such as transportation or counseling,” Sleven adds. “In
a system where you are seeing three or four different doctors, having
a person to talk to and lean on is absolutely necessary.”
“One of the challenges in the nurse navigation specialty is making
sure doctors and patients know it exists,” says Linda Maynor-Gardea.
And as the nurse navigation specialty expands, there will be metrics by
which to judge its success— financial, physical and emotional. But
for now, we have the perspectives of the patients, such as Mary Bass,
who says, “I don’t really know what it would have been like
to get through what I did without Melissa. Much harder.”
And we have the perspective of navigators themselves. “We help patients
not fall between the cracks,” says Pamela Rosapapan.
“It will be great when we can expand these programs to help identify
women at risk,” says Evelyn Calip. “We can assist with things
others might not think of—self image, breast reconstruction, sexuality—after
losing a breast. There’s still so much to learn.”
“I know that I see a tremendous amount of stress lifted from my patients,”
says Maynor-Gardea. “We work together with the patient to create
their team— surgeon, oncologist, radiation oncologist, etc.—so
the patient is included in this process. It makes them feel a part of
the care team and the treatment plan.
“We give advice on how to tell their children,” Maynor-Gardea
adds. “I have a plethora of information from all my experiences,
and I feel I was put here for a purpose. It’s a wonderful job.”