For Canadians with complicated health issues, it can be overwhelming to remember which doctor they’re seeing, which medications they need, and what’s coming next in care plans.
That’s why an entire industry is growing of health professionals who help patients and their families navigate their way through an increasingly complex health care system, taking care of the many small issues of illness so that patients can focus on the larger issue of getting better.
They’re called private health advocates, or navigators, and they’re mostly former nurses or other health care workers.
Many hospitals and cancer centres already have patient navigators who help inform patients about what their care will involve and keep them organized.
But there are also a growing number of private navigators who work outside the hospital setting. For several hundred dollars a day, or for a flat retainer fee, these professionals can help "translate" doctor visits, set up meetings with care teams, and organize home care and medications.
The clients vary, but typically are elderly and overwhelmed by the information from their doctors, and have no one else who can help them.
While some say private navigators are vital to helping patients, others worry they are helping to create a two-tier system in which those who can afford better care can simply buy it.
Dale Norton, 66, is one of dozens of patients in Canada using a health navigator. The Lincoln, Ont. woman has arthritis, and felt that her pain wasn’t being properly acknowledged and managed by her regular doctor.
Norton says she’s never been comfortable with doctors and her physician has “an abrupt bedside manner“ that left her feeling that he wasn’t listening to her needs. Even when she brought her husband to appointments, it didn’t help.
“I felt I wasn't getting answers that I needed as to what was causing the problems I had,” she said.
So she hired Lorraine Hulley from Pro Health Navigators to act as her advocate. Hulley, who has worked in cancer and palliative care, was able to come with her to doctor visits, explain medical jargon, and helped review Norton’s medications and test results.
Norton paid her a retainer of $1,000 and said she doesn’t regret it.
“Totally worth the money. My husband and I don’t have children, and I am making the assumption that Lorraine will be with us as we continue to age,” she said.
Hulley said many of her clients tell her they don’t feel like they can talk with their doctors.
“So we help to empower them, to build that relationship with their practitioners and to understand the limitations of our system as well,” she said.
Across Canada, there are an estimated two dozen private health advocate agencies across Canada, and some are now trying to organize an accreditation process.
Demand for the services is growing, said Susan Hagar, who runs Nurse on Board in Ottawa. She has seven nurses on staff and is hiring two more. Beyond the advocacy and the hand-holding, Hagar said she also helps to protect her clients.
“I have had patients who had incorrect medication and the wrong patient or the wrong dose. Human error is a reality and I need to protect people from that,” she said.
One of her clients is Anita Rosenfeld, who has a number of health conditions. Rosenfeld has had some excellent doctors, but has had others who didn’t explain things well to her and left her feeling overwhelmed.
“(Hiring an advocate) has made a 1,000 per cent difference. I have more comfort in the medications I’m taking. It makes me feel significantly better,” she said.
But some doctors say these advocates, or navigators, are creating an unequal system. In that camp is Dr. Danyaal Raza, a family physician in Toronto and chair of The Canadian Doctors for Medicare.
“These advocates are a Band-Aid solution but only for the folks who can afford their services,” said Raza. “And these are expensive services -- $80 to $90 to $100 an hour.”
He worries it’s chipping away at the universal health care system, instead of fixing the problems that lead to misunderstandings and confusion.
“How we can improve our health care system to make it better less fragmented, better coordinated care for everybody?” he said.
Rosenfeld said she has cut spending on other things to afford a health advocate and doesn’t begrudge the cost.
“It's an investment in my health,” she said. “It's an investment in my life.”
With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip
