Two months ago, 54-year-old Marlene Miller was in so much pain she could barely get out of bed.
Her breast cancer had returned after five years of remission, and had spread to her lymph nodes and bones. But when her doctor suggested she start palliative care, Miller resisted.
“I was like, ‘well I’m not ready to die yet.’ That’s what I thought palliative care was going to be about,” she said.
When she finally relented and started to feel better, Miller realized she had misconceptions about what palliative care really is. Her nurse and doctor are on call 24 hours a day, 7 days a week. They help regulate her medications and make sure she feels comfortable and empowered.
She can now do some of the things she loves again, like gardening and shopping.
“It has alleviated so much of my stress and fear,” Miller said. “Even as this progresses, I know I’m going to be looked after by these angels that are palliative care.”
Palliative care is not just about managing symptoms as death draws near. It’s a whole approach to care that takes into consideration physical, psychological, social and spiritual needs. When started early, studies show it can not only improve quality of life — in some cases, it can extend it.
But Miller is in the minority.
Only 15-30 per cent of people dying in Canada have access to hospice palliative care services, according to the Canadian Hospice Palliative Care Association.
A recent report from the Canadian Cancer Society paints a grim picture of access across the country. With no federal guidelines, most provinces have developed their own strategies, leading to a patchwork of care. Despite many investments in recent years, the availability, accessibility and quality of care still depend on where you live.
Quebec is the only province that has passed a law guaranteeing end-of-life care for the terminally ill.
The consequence? The majority of gravely ill Canadians are dying in emergency rooms. With an aging population, experts say we simply can’t afford the status quo.
A true choice?
With politicians and pundits in Ottawa focussed on medically assisted dying legislation, there is frustration that the urgent need for palliative care is being ignored.
Experts told a special parliamentary committee on assisted dying that Canadians can’t make a true choice to end their lives without access to quality palliative care.
Doris Barwich of the B.C. Centre for Palliative Care cites research that found over half of cancer patients who expressed a genuine desire to die met the criteria for depression and anxiety.
“If there’s no place for them to go, if there’s no one who will go there, ask them the difficult question with them and align the care they want and need, we’re afraid people will be asking for assistance in death,” she says.
The organization representing Canada’s palliative care physicians is calling for a Palliative Care Secretariat and a National Palliative and End-of-Life Care Strategy, as well as more research.
While all three major political parties agree Canadians need access to quality palliative care no matter where they live, they have yet to work together to make it happen.
Health Minister Jane Philpott says palliative care will be a major priority for the government over the next four years, as they negotiate a new health accord with the provinces and territories. But she provides few details.
“I have said repeatedly that I think every Canadian should have access to high-quality palliative care,” Philpott said.
“Investments through the health accords will make a big difference.”
The NDP has repeatedly called for a national strategy on palliative care. In committee MP Murray Rankin successfully amended bill C-14, the assisted dying bill, to include a commitment to work with provinces and territories to facilitate access to palliative care.
“I think there’s a political will to do it and I think if we keep the pressure up we might get somewhere,” Rankin said.
Conservative MP Marilyn Gladu introduced a private members bill last week to develop national standards, and explore whether changes can be made to the Canada Health Act to include palliative care services. Second reading is expected in the fall.
“I’m open to discussions,” she said. “I think the result is what’s important and all Canadians need this access.”