Recent Article on Palliative Care
CAMILLE BAINS Sun Oct 2,12:57 PM ET
VANCOUVER (CP) - Five years ago when Gary Fishīs wife lay dying of cancer, the despair he felt would catapult him into action so others could get the end-of-life care they need.
Fish, whose wife Lois died 10 weeks after she was diagnosed, also turned his grief into advocacy for caregivers like him to get easy access to resources - including a compassionate ear at the other end of a phone in the middle of the night.
"When somebodyīs diagnosed you go into shock, you go into another world, youīre just numb," Fish said. "You donīt know what you need, you donīt know whatīs going to happen. I didnīt know if it was going to be 10 weeks. It could have been 18 months."
Fish is part of a growing movement across Canada among advocates pushing federal, provincial and territorial governments for more palliative or end-of-life care funding to help the dying and their families.
As part of his efforts, Fish is compiling an Internet palliative resource centre that he hopes will be operational by January so information is available around the clock from one source.
Whether itīs a home care worker to do some housekeeping, a place to rent a wheelchair on the spur of the moment or just someone to talk to, Fish is hoping families wonīt have to continue navigating a maze during a time of crisis.
With the co-operation of the B.C. Health Services Ministry, Fish has also encouraged the provinceīs 24-hour NurseLine to provide more resource information to people about end-of-life care.
Sharon Baxter, executive director of the Canadian Hospice Palliative Care Society, said end-of-life care is fragmented across the country and that some provinces have few or no hospices where people can go to die in comfort while theyīre supported by a team of nurses, doctors and volunteers.
"In a city the size of Ottawa, there are nine hospice beds," Baxter said.
While most Canadians wish to die at home, there arenīt enough palliative care services for them, she said from Edmonton, where she was attending a palliative care conference that drew 800 people from across the country.
The lack of in-home resources means families are often forced to take their loved ones to the emergency department when they can no longer manage an illness.
That doesnīt make economic sense because the average cost of a hospital bed in Canada is $1,000 a day, Baxter said, while end-of-life-care at home or in a hospice would be much cheaper and better for the dying and their caregivers.
But whether someone spends their last days at home, in a hospice, a long-term care facility or the hospital, the government needs to provide the necessary funding so people can die with dignity, Baxter said.
"Until Canadians get pissed off like (Fish) has and frustrated about the system weīre not going to see a lot of change."
She quoted a Statistics Canada study from last year that says aging baby boomers mean there will be 33 per cent more deaths in this country by 2020.
"Canadians think that these programs are out there and itīs not until they bump up against the health-care system in a time of crisis, like Mr. Fish, that they realize the services arenīt there."
Last week, Baxterīs organization and 20 others calling themselves the Quality End-of-Life Care Coalition of Canada sent federal Health Minister Ujjal Dosanjh a report on palliative care needs and asked for a $20-million-a-year long-term strategy to provide the necessary resources.
The coalition says that despite a 1995 federal government report on the issue, another one in 2000 and a progress report in June by Senator Sharon Carstairs, Ottawa has made minimal progress on palliative care.
Baxter said that currently none of the provinces, except Quebec, even keeps track of how much money they spend on end-of-life care.
"They donīt even have it in a centralized place. Itīs covered under health and housing and social services."
Nancy Milroy-Swainson, a spokeswoman for Health Canada, said health ministers from across the country agreed in 2004 that all Canadians would have access to specific end-of-life home care without any cost to them by December 2006.
"The intent was to be able to support Canadians who wish to die at home but who otherwise would be institutionalized," she said of the plan to provide more nurses, doctors, spiritual leaders, social workers and home care workers for the dying.
Dr. Romayne Gallagher, a University of British Columbia clinical professor in the family medicine departmentīs division of palliative care, said provinces need to be accountable for the money the federal government is giving them for home support, nursing care and co-ordination of end-of-life services.
Gallagher is among those who say theyīre skeptical about the federal governmentīs plan to start delivering on its promises by next December.
"I must admit that sometimes I feel quite discouraged and I think itīs because little bits of funding are freed up and Iīm not sure I see the kind of movement that we really need," said Gallagher, who ran a public forum Saturday in Vancouver on death and dying.
Itīs important for everyone to become educated on the types of palliative resources that are available, Gallagher said, adding people in the community also need to be involved in the lives of the dying, just by providing practical help.
Dr. Margaret Cottle, a palliative-care physician, said some provinces have slashed funding for home care, leaving stressed-out people without basic housekeeping.
"If youīve got 82-year-old Mrs. Jones looking after 85-year-old Mr. Jones you need some of that and really, itīs very cost effective," Cottle said.
A national strategy for end-of-life care is important because dying people arenīt as concerned about their pain as they are about being a financial burden to their families, she said.
"My concern is that the economics of some of these things are going to make a push for people to just check out.
"Not only is that a real danger for the patient herself or himself but itīs a real danger for us as a society because the kind of heart and soul we have is really dependent upon how we care for the people who are the most vulnerable and suffering the most.
