A BEACON: Shelley Burr is one of 15 nurse navigators in Alberta who help patients plot their route through their cancer diagnosis and treatment.
Photo by Jeff Noon
Shelley Burr knows exactly what it feels like to receive a cancer diagnosis, and not only because she has been an oncology nurse for most of her career. Ten years ago she experienced shock, and then fear, when she was diagnosed with the disease. Now she uses her experiences as a patient as a foundation to her practice.
“My experiences have provided me with a greater understanding of the emotional highs and lows that cancer patients and their caregivers’ experience,” she says.
Burr lives in Medicine Hat, a small city of just over 60,000 people, its surrounding area dotted with small towns and farms. And while cancer does not care where you live, research shows that rural Albertans face additional challenges when faced with the disease. Not only do they struggle with the emotional, financial and physical components of their diagnosis and treatment, they also face additional travel and financial burdens, plus having to wade through bureaucratic culture shock when they get to the city. About one-quarter of Albertans live in rural settings. While the rest of the country becomes increasingly urbanized, rural Alberta’s population is actually increasing, by an average annual rate of 0.7 per cent.
“I understand what it is like to travel up to six hours to have a consultation with a physician or to travel for treatment,” says Burr. “It may be their first encounter with disease, or even with the health-care system. They are often faced with a number of appointments and tests and placed into a health care system that, while revolving around the patient, is sometimes not all that user friendly. My job is to ask ‘How can we make this better for you?’ and then seek ways to do just that.”
In 2012, the Alberta Cancer Foundation and Alberta Health Services took a giant step towards addressing the additional burden rural Albertans must shoulder. They began implementing the cancer patient navigator, or nurse navigator service. The provincial Cancer Patient Navigation program hired and trained registered nurses to help patients though the challenges of health-care access, integration and coordination of care. Working part-time, a small team of 15 navigators is currently helping smooth Albertans’ cancer journeys by providing timely access to information, access to community support and services and assuring continuity and coordination of care with experts in urban centers. Burr says a navigator helps patients do something as simple as schedule an earlier mammogram, access home care or explain her new
diagnosis to her family.
One of those patients is Medicine Hat resident Jack Sehn, who has had cancer four times, but only received help from a patient navigator – Burr – during his most recent diagnosis.
“When I was going through my cancer journey for my colon cancer, lung and even my first liver cancer diagnosis, I had no one to turn to with my questions or concerns. There was no one who you could quickly call to help with travel or treatment concerns. You just did it alone,” explains Sehn.
The help Burr has provided to him and his family has been invaluable, and he calls her “a godsend.”
“She will find out everything I need to know, whether that is helping to arrange travel, schedules, or helping with paperwork. She walks me through my diagnosis and prognosis, and empowers me to make informed decisions.
I can’t imagine doing this without her now,” says Sehn.
LIFE SAVER: Jack Sehn, a four-time cancer patient, says having a nurse navigator brought a sense of ease to him and his wife that was absent from his first three diagnoses and rounds of treatment.
Photo courtesy Alberta Cancer Foundation
In part due to an aging population, provincial estimates currently project 50 per cent of men, and one in three women, will develop cancer in their lifetimes, and one in four Albertans will die from the disease. But as more and more patients also survive their disease, managing cancer becomes increasingly complex. Cancer is but one term for hundreds of different diseases. Like people, no two cancers are exactly alike. Individuals and individual cancers respond to treatment differently. It is also different from any other disease in that it can develop at any stage of life, in any organ of the body. While the oncologists are increasingly knowledgeable about some risk factors, such as obesity and smoking, the cause of many other cancers remains unknown. Age, socioeconomic status, culture and health factors add to the complexity of the disease and the cure. Key points in the journey, like after the diagnosis but before treatment, during treatment but before remission and post-treatment can all have separate layers of complex social or emotional challenges that clinical staff do not have the time to assist their patients with. They are focused on saving your life, not your pocketbook or your spouse’s mental health.
“We know that there are certain key points of transition that are higher levels of needs,” says registered nurse and PhD nursing graduate Linda Watson. “A navigator helps at these key points. The first is at diagnosis. At diagnosis, the navigator would make sure they have the right info about their disease. The navigator can help connect them with specialists, with financial resources, help manage expectations and make sure they have the right information before they begin treatment.”
Watson is fond of quoting U.S.-based Dr. Harold Freeman, who spearheaded and developed the first cancer patient navigation programs in New York in the mid-1990s. He said: “No person with cancer should have to spend more time fighting their way through the cancer care system than fighting their disease.” Watson’s entire career has been focused on oncology. Her research degree looked at the experience and complexities of families with cancer, which prepared her exceptionally well to be the lead of the Person-Centred Care Integration Provincial Practices for Alberta Health Services. She has been working on developing and implementing a cancer patient navigation program in Alberta for more than eight years.
“Having cancer is hard no matter where you live,” says Watson, “This program is about making the journey as seamless and as tolerable as it can be.”
Early evaluations of the program show positive results: even a handful of nurse navigators working part-time can make a huge difference in patient and family satisfaction. Navigators can see the positive effect of improved support, collaboration practice within the care teams and system effectiveness.
Early reporting shows specialist team members also felt the difference, as they reported feeling reassured by the navigator’s ability to follow up with their patients before and after surgery, for example. Over the past two years, the province’s 15 nurse navigators, all working part time, have assisted more than 5,000 patients. In Medicine Hat, Burr was able to work closely with a social worker colleague to identify and resolve transportation obstacles to and from the local cancer centre. In the fall of 2013, she and that same colleague also spearheaded a Cancer Patient Survivorship Symposium that brought in specialists and patients to talk about their experiences, something Burr described as a highlight in her career. Now Alberta Health Services and the Alberta Cancer Foundation have partnered to ensure the program continues for the next five years.
“It’s pretty amazing,” says Watson. “People go through their whole careers and never get an opportunity to be a part of such a great program that makes such a big difference. To know that the program I helped develop has helped thousands of Albertans, that’s really cool.”