ACCESS to palliative care is still woefully inadequate for many Manitobans, according to advocates and experts who say the province needs to beef up its services before a critical shortage hits as baby boomers age.
On any given day in Winnipeg, health officials estimate 30 people who are dying of terminal or chronic illnesses are lying in hospital beds on medical wards when their needs would be better met in palliative units or hospices devoted to pain management and end-of-life care.
Some patients who want to die at home can't, because they don't have enough family support. Other times, the city's 16 hospice beds are full and patients have to be put up in the 45 palliative care beds available in Winnipeg hospitals.
By 2030, reports estimate 45 per cent of Manitobans will be over 65, and experts say it's only a matter of time before the health-care system faces a huge surge in patients approaching their final days.
"It's a nightmare to even think about what will happen if nothing happens," said Mary Williams, executive director of Hospice and Palliative Care Manitoba. "Things need to change because the baby boomers -- and I'm one of them -- are aging. And the older that we get, the more likely it is we'll end up with some kind of chronic complex illness or condition and we'll require supports that right now aren't necessarily available."
Dr. Mike Harlos, medical director of palliative care for the Winnipeg Regional Health Authority, said the region sees about 1,300 palliative care patients a year, and links them with community- and hospital-based services. Harlos said there are 35 palliative care nurses who visit dying patients in their homes to administer painkillers and monitor other symptoms such as shortness of breath or nausea. They keep in touch with a palliative care co-ordinator, who monitors available palliative care and hospice beds to decide who needs it the most -- a patient from another hospital or the community -- when the time comes.
Harlos said last year about 25 per cent of patients were able to die in their homes, and other cities, including Toronto, are trying to replicate the system Winnipeg has built.
The problem is there still aren't enough long-term palliative care beds, said Harlos, and many patients are occupying medical beds meant for people with acute illnesses or conditions. WRHA officials are currently reviewing a proposal to significantly expand that capacity.
"We need substantially more (palliative care) beds, like triple the beds we have," Harlos said. "(Hospitals) have people there who don't need to be in a tertiary care facility. It's not ideal for the patient or the system."
The situation is even worse in rural areas, since access to palliative care is limited outside Winnipeg.
Manitoba Sen. Sharon Carstairs estimates less than half of Manitobans in need of palliative care receive services, particularly in rural areas and aboriginal communities where home care and hospices are often non-existent. According to Carstairs, one death touches an average of five other lives, and bereavement counselling and six-week compassionate care benefits still fall far short of what's needed.
She said Canadians need more time off work to care for a sick loved one, and the federal government should take a lead role in developing a national strategy on palliative care to help provinces build up appropriate services.
"It's still woefully inadequate," said Carstairs, who became involved in palliative care issues after her mother was resuscitated at Grace Hospital in the 1980s despite requesting a do-not-resuscitate order. "My concern is the number of dying Canadians is increasing rapidly every year. Not because we have a tsunami of disease, but because we live in an aging society. If we're barely meeting the needs now, we're actually going to go backwards if we don't start doing something."
Compounding the problem is the fact that death isn't a popular topic for discussion.
While most people hope death will be quick and painless, a recent Senate report said that is only the case for 10 per cent of Canadians. Everyone else will begin a long, slow decline eventually ending in death, which is why medical experts urge families to discuss their wishes before they reach a crisis point.
"There's sort of a disconnect because dying is something we're all going to do but it scares the heck out of everyone," Harlos said.
Williams said she recently encountered a woman with advanced breast cancer who wanted to die at home, but couldn't because her elderly husband couldn't take care of her and her daughter works full-time. Due to a lack of palliative care beds, Williams said the woman remained in a hospital room with three other people and limited privacy.
She estimates the day when the health-care system is overloaded with dying patients isn't far off, and officials can't afford to wait much longer to address the problem.
"I would venture to guess that we're looking at maybe five or six years out from now, that soon," Williams said. "Certainly people are living longer lives, many of them are living healthier lives but at some point age and age-related conditions do enter into the picture and that day is not too far out, as far as I'm concerned."
How many palliative care patients are there in
Winnipeg Regional Health Authority officials say there are 1,300 patients enrolled in the palliative care program in a typical year. St. Boniface General Hospital has 15 palliative care beds reserved for extremely complex patients who stay an average of 10 days. Riverview Health Centre has another 30 beds for palliative patients who remain an average of 20 days.
Grace Hospice, with 12 beds, and Jocelyn House, with four beds, each offer around-the-clock care for patients in a home-like environment.
The region has another 35 palliative care nurses who visit patient homes to monitor their symptoms and provide pain management.
What can I do to plan
for end-of-life care?
Advocates such as Manitoba Sen. Sharon Carstairs said people should discuss their wishes with their relatives and draft an advance directive, a legal document outlining their wishes and designating a proxy decision-maker, should the time come when they are unable to make those decisions themselves.