While more than 90 per cent of Canadians could benefit from palliative care at some point in their lives, according to a recent Senate report, more than 70 per cent of the country does not have access to it.
"We are always literally fighting for our existence," said Dr. Sharon Baker, a palliative care physician consultant at the University Hospital in London, Ont.
"Acute hospitals don’t always see palliative care the way they should. One hundred per cent of [patients] deserve their right to the end-of-life care; they deserve the right to a good death. But a very very very very few percentage of patients or people will ever experience those things."
Even parts of the country known for having quality medical care find that services vary greatly among communities.
Derived from the Latin term pallium, which means, "to cloak," palliative care aims to provide patients with a comfortable, peaceful death with as little pain as possible. A Canadian doctor named Dr. Balfour Mount first coined the term in 1973. Today, there are over 530 palliative care programs and services across the country, including hospices, palliative care hospital units, and home palliative care programs.
Source: compiled by Jared Lindzon
"If you look at Toronto where I work, every hospital has a palliative care service…but if you go into Scarborough there’s almost no palliative care, and if you go west to Etobicoke or Mississauga you won’t find home palliative care," said Dr. Larry Librach, director of the Temmy Latner Centre for Palliative Care in Toronto. The centre was built with help from a generous donation.
While services vary greatly even in major urban centres like Toronto, those with the least access to palliative care tend to be those living in small communities or provinces.
"If you have someone in Labrador that requires specialist palliative care services, there is nowhere within Labrador that they can actually get that," said Dr. Fiona O’Shea, a palliative care physician at the Bliss Murphy Cancer Centre in St. John’s, NL.
With only limited services available locally, many patients in small communities have to decide if they’d rather receive palliative care elsewhere without their family by their bedside, or die in the community without specialized support, particularly for pain control.
No gold standard
Access to care also varies widely across the country with no province setting a gold standard, according to a recent study published by the Canadian Medical Association.
For example, a palliative patient in British Columbia will have access to a nurse round-the-clock, but has no standard for wait times or timely referrals. In Prince Edward Island, however, you are more likely to get timely service but without access to 24-seven nursing.
Due to the lack of earmarked government funding, the availability and quality of palliative care in a community is largely determined by private donations. If a community has a benefactor interested in supporting palliative care, that location will likely have superior services.
But because private donations can only pay for infrastructure, there is no guarantee that the palliative care facility can provide continuous funding for the staff and resources required.
More hospice care in affluent communities
A study published in May in the U.S. Journal of Pain and Symptom Management found that for every $1,000 increase in median household income in a county, the supply of hospice services increased by three per cent.
It also noted that most Americans died without using hospice care. In 2002, only 28.6 per cent of Medicare beneficiaries who died had used a hospice.
Before accepting her current position in London, Baker worked at the palliative care unit in her native St. Thomas, a small community just 22 kilometres down the road from London. Like most palliative care facilities, it was established with help from a generous donor. "[It was] one of the nicest units that’s ever existed in Ontario as far as an in-hospital palliative care," she said.
Because of budgetary shortfalls, the St. Thomas Elgin General Hospital amalgamated its palliative care unit, reducing the number of specific palliative care beds from eight to five, or fewer depending on availability.
According to Dr. Kelly Jones, the current palliative care physician at the St. Thomas Elgin General Hospital, patients these days are often transferred between units until they only have approximately two weeks to live. At that point they are given a palliative care bed if one is available.
"Access to that unit was very often times limited to if you were a cancer patient," says Brenda Lambert, vice president of patient services and nursing officer for the St. Thomas Elgin General Hospital. But fewer than 30 per cent of Canadians die of cancer.
This is similar to many other palliative care facilities across the country because the last stages of cancer are easier to predict than with other life-ending illnesses.
Well before downsizing, access to a palliative care bed in St. Thomas was difficult because it was the only unit designated for the 90,000 residents of Elgin County.
Baker left three years ago for University Hospital in London because of the cuts to the palliative care unit in St. Thomas. But she is now witnessing the same thing happening where she works in London.
Baker doesn’t blame the hospital, which is already working with a tight budget, for the cutbacks. Palliative care in Canada will continue to be limited until the government designates specific funding for it, she explains.
Baker and others argue that palliative care is worth supporting because it is one of the few health care programs that can save the system money in the long-run.
"We know that when patients are in a palliative care unit they have less diagnostic interventions, and they usually have less expensive medications," she says.
"It’s a fight worth fighting. I will advocate for my patients always. Their lives, their safety, their journey is something I will advocate for, day and night and in my sleep if I have to because it is worth it," adds Baker.