Easing the cancer journey

RNs who work as patient navigators ensure those diagnosed with cancer aren’t left feeling lost or forgotten in Ontario’s health care system.

Over a year ago, Krista Vance’s life spun out of control. In the spring of 2010, she began bleeding when she used the bathroom. Vance, 39, thought hemorrhoids had developed because her gallbladder had recently been removed. By the fall, she was bleeding more heavily and experiencing uncomfortable cramping. She made an appointment with her family physician, who ruled out hemorrhoids and arranged for an appointment with a surgeon out of fear the symptoms may point to cancer.

Vance left her doctor’s office, sat in her car, called her husband, and started to cry. Days later, she learned her physician’s fears were confirmed. She had stage three colorectal cancer.

“I was in shock,” recalls the stay-at-home mother to three girls in Waterloo. “I didn’t know how to handle that because it was the last thing I was expecting.”

Then, Carol Gunsch entered Vance’s life.

Gunsch is a registered nurse and patient navigator specializing in colorectal cancer at the Waterloo Wellington Regional Cancer Program. She works in the gastrointestinal diagnostic assessment program. She connected with Vance prior to her cancer treatment and, as the Waterloo mom says, played an important role in making an overwhelming ordeal a little more manageable. “There was no question that somebody was taking care of me, which was nice because you don’t feel like you can take care of yourself,” says Vance. “For me, (Gunsch) was a godsend.”

Following a cancer diagnosis, some patients become increasingly anxious about their future, or wary about the health-care system. In fact, many describe it as maze-like. This may cause them to postpone or skip appointments, delaying their treatment. RNs who work as patient navigators in Ontario help guide patients in three key areas: they screen for symptoms; get patients through the diagnostic process in the most expeditious way; and ensure patients are not lost when transferred from one health-care team to another. Patient navigators also provide education and support.

The results of a recent survey of more than 2,000 patients by Cancer Care Ontario (CCO) show Ontario navigators are having an impact. More than half of those surveyed were in the process of being diagnosed with lung cancer; the rest, colorectal cancer. Preliminary results from the November 2011 research show patients have less anxiety and are reporting improvements in shortness of breath because a navigator has zeroed in on these symptoms.

Armed with three years of experience as a supportive care coordinator in outpatient oncology, Gunsch began her position as a navigator two years ago. She was one of the first to sign up for the CCO pilot project that has introduced 14 patient navigators in hospitals across the province. With funding from the Nursing Secretariat, Ministry of Health and Long-Term Care, patient navigators were hired in 2009-2010 in Barrie, Oshawa, Thunder Bay, Kitchener, Toronto, Hamilton (in collaboration with Niagara), and Kingston. The second phase of the pilot started in April 2011; navigators were added to another seven hospitals in London, Ottawa, Windsor, Newmarket, Sudbury, Toronto and Mississauga.

Gunsch’s professional experience made her an ideal candidate for the role. From 2007-2010, she worked in partnership with a medical oncologist and heard patients’ first-hand accounts of gaps in the health-care system. Some described feeling lost or left hanging. She became interested in CCO’s pilot because she wanted to help close those gaps. Gunsch took on the job with an initial goal of assisting patients who felt disoriented. Now, she says her role has evolved into much more: she helps patients with symptom management, and is in constant contact with them to answer questions and concerns. Over the course of one day, Gunsch chats with eight to 10 patients, and also talks to family members who may have questions such as: Can I have more information about the diagnosis? What will my loved one go through next? How can we prepare for the next steps?

Some patients – Vance included – are referred to Gunsch on the day of a colonoscopy. Other referrals come shortly after the procedure, and around the time of diagnosis. Gunsch connected with Vance the day after her colonoscopy to explain tests and timelines. She ended their first conversation by telling Vance to call her anytime. The two spoke almost daily about appointment times and various procedures. Gunsch spent a whole hour during one of their initial calls explaining each test, Vance remembers, adding that the RN also linked her to HopeSpring Cancer Support Centre in Waterloo, which offers a number of resources, including peer support, to those living with cancer. Their relationship ended when Vance began seeing her medical oncologists, though Gunsch met with her numerous times to lend additional support.

“The hardest part is the waiting,” she says. “(Gunsch) just moved me along as quickly as possible.”

Vance says a lot of tears from her three children – who were 11, 9 and 6 at the time – accompanied news of her diagnosis. “It’s a nightmare to think (what) if I lose my mom (as a kid),” she says. But Gunsch, she adds, played a vital role in reducing the mom’s anxiety level by connecting her with a social worker.

“As you’re talking to (patients) more and more every day (their stress) just drops. They’re no longer in panic mode when they call you,” Gunsch says of her ability to not only impact on patients’ satisfaction, but also their anxiety levels. “To me, that’s my greatest pleasure out of this role…to see that difference.”

The patient navigator position started forming roots in Ontario in 2007, following consultations between CCO and key stakeholders, including nurses, primary care physicians and patients.

During these meetings, patients talked about the confusion, anxiety and fear they felt in the time between suspicion of cancer and diagnosis. Patient navigators working in the province’s funded pilot program are RNs. CCO chose to include nurses in this role because patients who are suspected to have cancer benefit from the clinical judgment capabilities of an RN, explains Esther Green, provincial head of nursing and psychosocial oncology with CCO. “We listened very carefully to what the patients said and placed the role in that greatest area of need.”

In Canada, Nova Scotia was the first province to implement the position in 2001. Although referred to by different names – in Quebec, navigators are called infirmière pivots en oncologie – patient navigators exist in every Canadian province.

For Vance, whose cancer treatment has now wrapped up, navigators are essential caregivers during what can be a worrisome, life-changing period in your life. “The sense of somebody on your side from the beginning – you can’t replace that with anything else,” she says.