Susan Stefanishyn knows how important quality time is for those who don’t have much of it left.
As volunteer co-ordinator with the Russell and District Palliative Care Program, her job is matching volunteers to those in the community with a life-limiting illness.
These caring individuals make a huge difference offering emotional and practical support during a dying person’s last days, whether it is in a hospital, personal care or home setting, said Stefanishyn, who also volunteers on her own time. While they aren’t directly involved in medical care, they also support those who are, she said.
“I remember this particular lady who was from a farm and she loved to be outside,” she said. “We’d take her for walks and whenever we’d take her outdoors she’d always start to talk about her gardens.”
She loved visits from Stefanishyn’s dog too. “He made her remember her own pets,” she said. “She welcomed him with open arms. He gave her a lot of joy.”
These volunteers work at a local level, but are also part of a larger regional health team — the doctors, nurses, other hospital staff and home care — of regional health authorities providing palliative to those who, due to age or illness, are nearing the end of their lives. Palliative care is provided in a variety of settings, including in private residences, personal-care homes, in hospital and hospices.
The word palliative comes from Latin ‘palliare’ which means ‘to cloak.’ It’s a holistic form of care for the dying — sometimes called end-of-life care — and is focused on helping someone die in comfort and dignity through pain and symptom management, and spiritual support.
Through the Regional Health Authorities global funding, Manitoba Health currently funds 15.6 palliative-care co-ordinator positions throughout Manitoba, with 9.2 of these positions allocated to rural RHAs. These co-ordinators work alongside the larger regional health-care teams of physicians, home care and other hospital facility staff providing end-of-life care.
But palliative-care delivery is not only a regional service. Local communities, through their volunteer programs, are directly involved in service delivery too, and as anyone buying a raffle ticket or sitting down to a soup-and-pie luncheon somewhere in rural Manitoba knows, much of the money for palliative-care delivery comes directly from local wallets.
Fundraisers by community palliative-care groups pay for all the things provincial funding does not — wheelchairs, specially designed beds, furnishings for rooms, and salaries for local co-ordinators in roles like Stefanishyn’s.
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Communities are generous and donations are often made in memory of someone. Russell this spring will cut the ribbon on a $250,000 sunroom hospice-within-a hospital facility built on to the south wing of the local health centre. Every dollar for it came from the community through multiple fundraisers, donations and funds from the local foundation.
The community is very proud of what it has achieved, says Russell mayor, Chris Radford.
But he’s one of a growing number of local leaders who feel the provision of palliative care has become disproportionately dependent on this kind of local fundraising, and he’s worried that local resources are not only being stretched to their limits but not redirected as best they could.
“We have a local co-ordinator who is out fundraising to raise money for her own wages,” he said. “We have local volunteers who instead of sitting with the people who they’d like to be serving, are holding bake sales.”
The Russell council says palliative care needs to become a higher priority for the provincial government, and changes are needed to funding arrangements with the RHAs so they can devote more resources to it.
And other municipalities attending last year’s provincial municipal convention agreed by supporting its resolution to the effect.
“We think it’s only right that this should be funded off the public purse rather than on the local taxpayer,” he said.
Municipal officials see demand for palliative care rising amidst scarce resources as rural populations become older, says Association of Manitoba Municipalities urban vice-president and Gladstone mayor, Eileen Clarke.
Right now communities are picking up the tab “because we care and because so often our family and friends are using this,” she said.
But local leaders see more people asking for a setting of their choice in which to die with dignity, free of pain and surrounded by their loved ones.
“Our biggest concern is with our aging population and health-care centres being so overloaded with seniors waiting for placement,” said Clarke.
The AMM’s main recommendation to the province is that it allocate funding for local palliative-care services, that would also help pay salaries for full-time co-ordinators for communities that require one.
Manitoba Health does not track the total number of patients currently receiving palliative care since care is received in a variety of settings, a spokesperson for the province said. There were 1,679 individuals registered with its Palliative Care Drug Access Program at the end of the 2012-13 fiscal year.
Only 16 to 30 per cent of Canadians who die currently have access to or receive hospice palliative- and end-of-life-care services depending on where they live in Canada, according to the Canadian Hospice Palliative Care Association.