New 'nurse navigator' guides Indigenous patients on cancer journey

An Inuit family from Pangnirtung, Nunavut is healing from the heartache of multiple cancer diagnoses with the help of an unconventional nurse at the Ottawa Hospital.

Debra Evic, 19, was diagnosed with an advanced form of the brain cancer glioblastoma after she developed severe nausea and headaches during a student trip to Quebec City. More awful still is that she's the third of her siblings to develop cancer. Two other sisters have died of the disease within the last two years, one at age 15 and the other at  age 21. 

All of the sisters have been treated in Ottawa. What's different this time is that the family is going through it with the help of Carolyn Roberts, the hospital's first Aboriginal Patient Nurse Navigator.

New nurse understands remote communities

Roberts is not Indigenous herself, but she brings two decades of experience nursing in rural outposts after growing up in the tiny, remote village of Rivière-Saint-Paul, Quebec, near the Labrador border.

"I can understand the insecurity, the feeling out of your element when you come to an urban setting," she said. "Especially when you're sick. And with these patients who have cancer, they're already coming here so stressed."

Roberts was hired to work with all Indigenous cancer patients, but has been spending most of her first year on the job with Inuit people who have travelled from Nunavut for treatment. Like Evic, most stay at the west-end Larga Baffin boarding home during their time in Ottawa, travelling to and from the hospital in the facility's big white vans.

Frequently, Roberts says, that stretch of the Queensway is an Inuit patient's only experience of the city.

"Being urban, you take it for granted, 'Just get on the bus, go!'" Roberts said. "That's not as easy as it sounds. English isn't their first language. And like I say to urban people, let's go on a trapline in the middle of Nunavut, and you get from A to B without assistance. We all need assistance when we're out of our comfort zone."

Building trust begins outside the hospital

Job one for Roberts is typically to get the patient out of the hospital to restore their mental health and begin building trust.

"As soon as we're outside of the hospital, the barriers are down, they're more relaxed, and then we can really talk," Roberts said. "Some of our deepest conversations, not just about cancer but about all aspects of their lives, have taken place outside the hospital setting."

That's how Roberts began her relationship with Evic and her parents, whom she first met at a medical appointment.
    
"I waited outside, and when they came out they were obviously very scared, very overwhelmed, very frightened," Roberts said. "It wasn't a time to take a family to an office in the Ottawa Hospital and talk. And they certainly didn't want to talk about cancer anymore."

Instead, Roberts took Evic and her parents to Parliament Hill, which they'd never seen despite their many long stays in the capital, with a stop along the way for a photo at the statue of Terry Fox. They've had many adventures together since then, from Ottawa Senators games (where Roberts has received free tickets for patients and their families) to Evic's first-ever swim in a pool.

Roberts said medical staff initially feared the family might forgo medical treatment altogether for their third cancer-stricken child. But Evic now looks forward to her trips to Ottawa and time with Roberts.

 "I told her I couldn't wait to come here, couldn't wait to see her and be with her," Evic said. "She takes us anywhere, and it's helping."

'An angel in disguise'

The bond that's developed between them has made Roberts a go-to person for Evic's medical concerns. She answers questions about cancer and treatment, and programs Evic's phone with reminders to drink fluids. And she's been there in dark moments, like the day Evic landed in the intensive care unit because of a seizure.  

She was crying out of grief for the loss of her sisters, grief for the loss of the previous life she had.- Carolyn Roberts

"She just cried and cried, and I just comforted a sick child," Roberts said. "She was crying out of grief for the loss of her sisters, grief for the loss of the previous life she had."

Other patients also describe Roberts as a huge source of comfort. "An angel in disguise," according to colon cancer patient Rhoda Nutarak. Rhoda's husband Jesse agrees. Far from home, with neither earning an income, they've worried about their family's ability to heat their home and buy food in Pond Inlet, all while dealing with the stress of a cancer diagnosis.

"When you learn that one of your relatives has cancer, it automatically clicks into your mind that death is very near," said Jesse Nutarak. "When you're in that state it helps a lot when you meet a person like Carolyn, who supports us very effectively."    

More supports on the way

Roberts has the support of hospital leaders for her unique approach to care, including spending time with patients outside the building.

"It's innovative," said Paula Doering, the hospital's vice-president of clinical programs. "She needs to develop a trusting relationship."

Roberts is also part of a bigger effort to educate hospital staff about Indigenous culture. There has already been one conference for senior leaders and another one is planned for spring. Doering says a strategy to educate front-line staff will follow. 

"Patients are more likely to accept treatments and therapies when we understand what's important to them," said Doering.

Debra Evic and her family could need the hospital's support for a long time to come. Doctors believe their cancers have a genetic basis, and two more siblings will be tested to assess their own risk. If they develop cancer, they too will likely need treatment here in Ottawa.

"I just go forth saying, 'I have to give them as many positive experiences as I can,'" Roberts said. "It's my mission."