End-of-life programs have gaps

Paul Carroll knows he and his wife Carolyn were luckier than many Canadians when it comes to palliative care.

TORONTO — Paul Carroll knows he and his wife Carolyn were luckier than many Canadians when it comes to palliative care.

When she was facing her final weeks of life in 2002 after being diagnosed with terminal lung cancer, Carolyn was able to enter a hospice that provided round-the-clock medical care in a home-like setting.

“We never thought about a hospital,” said Carroll, who looked after his wife in their Burlington, Ont., apartment for as long as he could manage.

“Unless something terrible had happened, there was no way that Carolyn was going to be dying in a hospital. She’d be at home.”

“That’s probably where she would have been if I’d been able to look after her the way she needed to be cared for,” said Carroll, 72, who was unable to lift his wife in and out of bed because of his bad back.

“It helped me in that I knew that when I went home at night, she was going to get the best of care,” he said of the hospice.

“And for me, I was able to sleep a little better.”

That isn’t always the case, says the Canadian Cancer Society. Too many people with a terminal illness do not get to choose the setting where their lives will end because palliative-care services and support programs for caregivers vary across the country.

It’s a pressing issue the society decided to highlight as part of its annual report on cancer statistics, released Wednesday.

This year, an estimated 173,800 Canadians will be diagnosed with some form of cancer, up by 2,800 over 2009; 76,200 are predicted to die from the disease, an increase of 900 compared to last year.

“We think it’s critical that people who are dying from cancer are able to spend their final days with dignity, free of pain and in the location of their choice,” said Heather Chappell, the society’s director of cancer control policy.

“And that’s not happening across the country for everyone.”

“We do know that most terminally ill people do want to die at home,” she said.

“But what we saw in the report is about 55 per cent are dying in the hospital.”

Chappell said there is no national program for providing end-of-life care — a strategy that is critical if the health-care system is to plan for and deal with an aging population that will be prone to higher rates of cancer.

“What you’re seeing across the country is a wide variation and amount of support … so depending on where you live, you may have access to very good palliative-care services in the community or you may not,” she said.

“So it’s a bit of a patchwork right now.”

Not only do spotty end-of-life programs leave many people facing death without the medical, psychological and spiritual care they need, but a dearth of services can place an enormous emotional and financial burden on loved ones who end up as primary caregivers.

The Canadian Cancer Statistics 2010 report estimates that a family caring for a terminally ill cancer patient at home incurs costs of more than $1,000 a month on average, not including lost income from taking time off work.

The Cancer Society is calling on Ottawa to implement a national caregiver strategy that would extend compassionate care benefits to 26 weeks from the current six weeks and establish a tax benefit to help families with costs, said Aaron Levo, acting director of public issues.

“This is to provide job security. It’s a recognition that people take time away from their careers to provide support to our health-care system,” Levo said from Ottawa, noting that the economic value of caregiving to family members with cancer and other conditions amounts to about $25 billion a year.

“What we need is some recognition of the sacrifice that caregivers make, and some job security and some income protection for these Canadians,” he said.

Even where end-of-life programs are available in communities, patients and their families can be unaware they exist or how to access them.

And because it is often difficult to anticipate when death will occur, palliative care may be delayed and the specialized needs of the dying go unmet.

Joanne Morrison, 60, describes the more than four years that she cared for her husband Guy after his brain tumour diagnosis in 1997 as an emotional “roller-coaster ride.”

Her employer allowed her to take time off work when needed and her company benefits paid for a night nurse to care for her husband, who died in 2001 at age 52.

“And I did have a lot of support from my family and friends as well,” said Morrison of Mississauga, Ont., west of Toronto. “Because you can’t really do it 24-7.”

Having that support — her two sons and daughter-in-law moved in to help her — allowed her husband of almost 31 years to die at home.

“At the end, it was just really helpful to have my family right there,” said Morrison. But she stressed that not everyone has the resources she did.

“Most patients ask to die at home, and I always say to caregivers: ’Don’t feel guilty if you can’t manage it.’ For me, it took four people. For others it may take more.”

That’s why a national caregiver strategy that provides equal access to end-of-life programs for both patients and their families is essential, stressed Chappell.

“What’s most important is when you’re going through a terminal illness, you want to be able to have the choice to spend your final days in the most appropriate setting for you. That could be at home, that could be in the hospital, that could be at a hospice,” she said.

“Right now, it’s very inconsistent for all of those across the country.”

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