Winnipeg Free Press - PRINT EDITION

Where to turn to help dying loved ones?

Families often unaware of services: report

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Beverley Bettens didn't know much about palliative care, let alone how to administer powerful narcotics.

But when doctors told her ailing husband, Albert, he may have weeks or months to live, Bettens was thrust into a life as a primary caregiver for a terminal cancer patient.

For an entire year, Bettens spent 24 hours a day caring for Albert, making sure he was comfortable, that the blinds were drawn, that he wasn't in pain.

The problem was Bettens didn't have what she needed.

She said no one told her what to expect when Albert's health started to fail and no one told her where she could find more support.

"(Doctors tell you) you've got two weeks, two months, two years (to live), it's not curable and we can maybe buy you time and that's it," Bettens said. "They tell you nothing."

Bettens' concerns are echoed in a special report on access to end-of-life care released Wednesday by the Canadian Cancer Society. The report compared end-of-life research data from British Columbia, Ontario and Nova Scotia and found that although end-of-life services exist, patients and their families often don't use them because they don't know what supports are available or how to access them.

The Canadian Cancer Statistics 2010 report estimates 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 the financial hit.

Although Manitoba data was not included in the study, provincial advocates say there is a patchwork of end-of-life supports that makes it difficult for patients to find out exactly where they can get the help they need.

"There's a patchwork of care across Canada and within Manitoba and it's very hard to identify where the resources really are," said Erin Crawford, director of public affairs for Canadian Cancer Society Manitoba Division.

Crawford said the organization wants to see health-care providers have conversations with patients about end-of-life care when they are diagnosed.

Although most terminal cancer patients want to die at home, Crawford said statistics show more than half of deaths occur in hospitals.

She said linking patients with resources and support groups can help inform them of what they can expect and what they need to die at home, for example.

"We want those conversations to be happening in a consistent way so people are getting access to that palliative care, no matter where they are or how many hospice beds there are," Crawford said.

"They don't know what to expect, they don't know what services are available, they don't know at what point to say, 'give me some serious pain medication.' "

Bettens' son, Jamie, said his mother put her life on hold for an entire year to care for his father and became extremely "rundown." Bettens said his mother did everything for his father, even though she had a cancerous tumour surgically removed just months after doctors said his father was dying.

"She was everything," Jamie Bettens said. "Her life was on hold for an entire year."

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.

 

--with files from Canadian Press

jen.skerritt@freepress.mb.ca

 

Republished from the Winnipeg Free Press print edition May 20, 2010 A7

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