“The administration and delivery of health care are the responsibility of PT (provincial and territorial) governments,” Health Canada spokesperson Natalie Mohamed explained in an email to The Catholic Register.

When the 10-year-plan was launched in 2017, the feds negotiated five-year agreements, called “action plans,” with provincial governments. The federal government is now in negotiations with provinces to define the scope of the next five years of home-care and palliative-care spending.

“A majority of PTs explicitly included palliative-care initiatives in their (2017) action plans in the bilateral agreements,” Mohamed said. “However, tracking palliative care-specific funding under these bilateral agreements is challenging as there are multiple occurrences where an initiative encompasses a much wider scope, with palliative care as only one component.”

If Ottawa is unsure how much palliative care its $3 billion bought, following the money is no easier for the professionals who deliver more home care in Ontario than anybody else.

“I’m not really sure what happened to that ($3 billion), if that was kind of left up to the provinces to determine then how they would use it,” Nancy Lefebre, Saint Elizabeth-SE Health vice president and chief operating officer for the business of caring, told The Catholic Register. “We didn’t see a whole significant shift or change in the province in terms of access to palliative and end-of-life care.”

The difficulty of shifting to more home care and palliative care was highlighted in a Canadian Medical Association Journal editorial in September.

“In Alberta and Ontario, only one in six people who died in 2016-2017 received publicly funded palliative home care,” CMAJ deputy editor Dr. Andreas Laupacis wrote. 

Changing the culture around end-of-life care is proving to be a bit of a headache.

“One of the barriers to acceptance of palliative care is the misconception, including among some clinicians, that palliative care means minimalist care,” Laupacis wrote.

The vague realization that we’re all going to die doesn’t necessarily translate into a plan or policies that address society’s collective responsibility to help all people die well. Of 270,000 Canadians who die each year, about 90 per cent die of chronic illnesses including cancer, heart disease, organ failure and dementia. These people would  benefit from palliative care and a solid majority of them would rather receive that care and end their days at home. But only 15 per cent actually receive palliative home care in their last year of life. Those who get what they want — palliative care at home — are 2.5 times more likely to die at home, according to a 2018 Canadian Institute for Health Information study.

Patients aren’t asking for a gold-plated, luxury service governments could never afford. The last time the Ontario Auditor General looked into the cost of dying in 2014, it found:

• an acute care bed costs $1,100 a day, 

• a palliative care bed in a hospital costs $630-$770 per day, 

• a hospice bed costs $460 daily,

• staying home costs $100 a day, or less.

Our modern, technology-driven hospitals are actually stuck managing the fallout from their own success. Modern medicine has become so good at fixing and managing the problems we accumulate over a lifetime that we are living longer with chronic illness, degenerative diseases, cancer, etc. People who would have been dead a generation ago are still with us — frail, suffering and needing palliative care.

“It is unlikely there will ever be enough palliative-care specialists to provide such care to all patients who need it,” writes Laupacis.

An army of palliative-care MDs is not how the home-care specialists at Saint Elizabeth imagine they will meet the challenge.

“Funding needs to be redirected to support services at home,” said Lefebre. “New models, we’re talking about modernizing home care. They (provincial governments) need to be open to new models of care, new ways of doing things.”

Lefebre imagines a future in which palliative care is delivered primarily at home. And not just to individual patients but to their families and friends who need training and support so they can meaningfully participate in the care of their loved ones, followed by psychological and spiritual support to guide them through the grieving process. Rather than leaning on hospitals to bail them out whenever a patient’s condition gets worse (shortness of breath that comes with heart failure, choking that comes with dementia, pain that invades the body with cancer), Lefebre’s ideal model would see home-care teams supported by a local hospice. Hospices should be the natural hub for a community based model of palliative care, she said.

But getting hospices built and financed has proven incredibly difficult. If it costs $20 million to build a new 10-bed hospice, the provincial government only ponies up $2 million. The $105,000 a year the province provides to pay nurses, personal support workers and other services per hospice palliative bed is well short of the actual costs of high-quality palliative care. 

In budget terms and in terms of the Canada Health Act, hospices and palliative care at home aren’t actually part of Canada’s publicly funded health-care system. Want a hospice? Hold a bake sale. Want hospital beds? The government pays.

Lefebre wishes governments understood just how urgently Canada needs to change its health-care funding and delivery.

“We need a burning platform to get this thing moving,” she said. “If we could get a citizen movement, that could be more helpful in terms of putting more pressure on government and politicians to start demanding these kinds of services within their own homes.”

The Quality End-of-Life Care Coalition of Canada wants Ottawa and the provinces to stop letting constitutional jurisdiction interfere with nationwide palliative care. The coalition is demanding a truly national framework for care.

“There must be a well-funded, sustainable national strategy for palliative care,” the coalition told the government in its February 2022 budget submission. The coalition, which includes SE Health, the Canadian Society of Palliative Care Physicians, the Canadian Cancer Society, the Canadian Association for Spiritual Care and the College of Family Physicians among others, has had it up to the eyeballs with Canada’s fractured, piecemeal, uneven and provincial approach to health care.

“It is vital that Canada take a national approach and finally move forward in implementing the Framework and Action Plan on Palliative Care in Canada,” they said.

Earmarking a mere $29.8 million over six years in the 2021 federal budget to improve access to palliative care is better than nothing, said the coalition, “But it barely scratches the surface in terms of the funding needed to ensure proper awareness, access and delivery of quality palliative care.” 

The good news is that COVID proved the system can change and change fast, Lefebre said. Virtual visits from nurses, chaplains and doctors are often all that’s needed to ensure a patient is stable, but that wasn’t recognized by Ontario’s funding system before 2020.

“We never had virtual visits funded (before COVID). We were fighting that battle for 10, 15 years,” Lefebre said. “The pandemic comes and within two weeks we have funding codes for virtual visits. What was so hard about putting them in place in the first place? I don’t know.”

Lefebre isn’t demanding more resources from government, just the right resources in the right place at the right time.

“We have to be creative and innovative with the resources we have at this moment in time,” she said.