When Perram House closed in 2013 (it’s been suggested it “may have struggled because it prioritized marginalized and homeless people”), “Kensington Hospice in downtown Toronto and Dorothy Ley Hospice in Etobicoke … [became] the city’s only residential hospices, providing a total of 20 hospice beds for a population of 2.6 million. (Casey House, which serves AIDS patients, is classified as a hospital.)”
“Residential hospices are relatively new across Canada [it’s linked to the 1970’s “at the same time cancer treatment centres identified and prioritized pain and symptom management”], but palliative care experts say they are a crucial option for patients who do not need to be in hospital and cannot die at home. They combine a home-like environment with 24-hour medical care and psychological support.”
“Polls have shown that most Canadians want to die at home, surrounded by their loved ones. But most people end up dying in hospital... ‘So there's a mismatch there that suggests that we're not providing everybody with the care that they would ideally like to have.’”
As the city continues to grow and the population continues to age, (“by 2026, the number of Canadians dying each year will increase by 40 per cent to 330,000 people, with each death affecting the well-being of five other people on average - families and loved ones - or more than 1.6 million people in all”), we’re already in a crisis, though the problem will continue to become more and more acute.
How Did We Get Here?
- Discomfort with grief and death. We live in a death averse society (you can read more about the Death Positive Movement in a previous blog here)
- One major reason is that many patients don’t have discussions with their primary-care doctors or specialists about where they want to die and what kind of medical interventions they want as their lives come to a close
- Several myths around hospice and palliative care still exist
- Aging population
- Population growth
- Inconsistent care and standards
- Lack of funding and prioritization
- “Currently only a small number of provinces have designated hospice palliative care as a core service under their provincial health plans.”
- “In the remaining provinces, hospice palliative care may be included in provincial home care budgets or other health service budgets, leaving the funding vulnerable to budget restrictions.
A Look Beyond
When we look at what’s needed to shift the current realities of hospice care, much of it centers around better integration into the healthcare system and addressing the need for, according to the Canadian Hospice Palliative Care Association:
- More training for health professionals and carers;
- Improved access to pain and symptom management medications;
- The inclusion of hospice and palliative care into existing health policies;
- Opportunities for older people to be involved in decisions around their care.
What’s more, experts recommend six to seven care beds for “every 100,000 people.” In cities like Toronto, that are “currently under-servedin hospice-palliative care,” (Compared to Calgary with 120 beds in 7 hospices. Of the 49 hospices in Ontario with 359 beds, only 2 hospices with 20 beds are in Toronto.)” “By contrast, Saint John, N.B., has 10 beds for a population of 70,063.”
“There are about 193 palliative care beds in Toronto hospitals, but most have a vacancy rate of close to zero and limit stays to 15 days. Patients can stay in a residential hospice for three months or longer.
“As for home care, Toronto Central Local Health Integration Network (LHIN) funds three visiting hospice programs. But for patients with complex needs or without a family caregiver, it is only a short-term option.”
“In Canada, the informal contribution of family members accounts for more than 80 per cent of the care dying people receive, and they save the healthcare system $31 billion a year.”
An Innovative Concept
New concepts like The Toronto Commandery Hospice are being brought to life to respond to the already looming crisis. With a proposed two-floor 25,000 sq. foot building, housing 10 beds in private rooms, with state-of-the art amenities and resources, some relief may be possible.
They plan to build a “residential hospice and Centre of Excellence to provide hospice-palliative care services in Toronto. Funds raised will be applied towards:
- Construction of 25,000 sq. ft., two-storey hospice building
- State-of-the-art furnishings and equipment
- Development and expansion of non-residential hospice-palliative care services
- Start-up operational funding, to be complemented by annual funding from the Ontario Ministry of Health and Long-Term care (in the amount of $105,000 per bed)
- Training for palliative care professionals and volunteers.”
What’s Needed: Community Improvements
“Residential Hospices are a vitally-needed pillar in a well-planned, comprehensive, systemwide continuum of end of life care provided by an integrated interprofessional team working in lockstep.”
“Hospitals are not designed or organized to care for end-of-life. The combination of residential and visiting hospice services that we provide will achieve two important objectives:
- Substantially improve the quality and scope of care for Toronto families at the end of life
- Reduce strain on hospitals and the cost to the healthcare system.”
It’s tough for governments to curb the crisis on their own (don’t have the money and taxpayers aren’t likely to accept more taxation). “Over 25 years, 10 hospice beds saves the Province over $50 Million.”
What’s really needed is more than “bricks and mortar” and instead, “a fundamental recognition of the nature of terminal care and how it supports patients and families.”
When we look at the system at large and consider any setting where “someone may be expected to die, there should be an adequate hospice palliative program in place, and there's a continuum of care from the home to residential hospices, long-term care and in hospital.”
Furthermore, there is “no one-size-fits-all scenario for dealing with a loved one's death, especially if the person has complex medical requirements.” It’s integral to “tailor the care to individual patients and individual families.” The “best place for some people and for their families is in a hospital or in an in-patient palliative-care unit or a hospice. Not everybody should be dying at home.”
To read more about hospice and palliative care, you can revisit a past blog post here.
No matter what, it’s vital to find the solutions that work for you and your loved ones. While we’re certainly in a crisis around access to palliative care, we definitely don’t also have to be in a crisis when it comes to having, what are often, difficult and uncomfortable conversations when it comes to end-of-life planning. The more open, honest and direct we can all be when it comes to talking about death and dying, the closer we may also get to ending the hospice crisis in Ontario.
To learn more, visit us at eirene.ca. We’re here to support you and your family.