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Work needed to improve end-of-life care, report suggests Add to ...

When it became clear that Mary Carroll had only a few days to live, she was transferred from a sprawling hospital to a nine-bed palliative-care residence.“The nurses greeted Mom, they got her washed and served her a cup of tea,” her daughter, Therese Barrett, recalled in an interview. “She went from a Johnny coat to a beautiful negligee. It was night and day.”

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Ms. Carroll, 78, died three days later at the West Island Palliative Care Residence in Kirkland, Que. But the time in palliative care was peaceful and comforting for both her and family members.

“It was a wonderful way to die. That just wouldn’t have been possible in the hospital,” Ms. Barrett said.

Yet that end-of-life experience is far from the norm.

A report published Tuesday by the Canadian Institute for Health Information shows that 45 per cent of terminal cancer patients still die in acute-care hospital beds, even though the vast majority would prefer to spend their final days in more intimate settings.

Moreover, the rates vary substantially between provinces, ranging from 69 per cent of Manitoba cancer patients dying in hospital to 39 per cent in British Columbia.

Lee Fairclough, vice-president of strategy, knowledge management and delivery at the Canadian Partnership Against Cancer, said the new data provide some insight into end-of-life care for cancer patients but need to be interpreted cautiously, especially in that there are no data about where the other 55 per cent of cancer patients die.

“A lot of the differences are due to system design,” she said. Manitoba has opted to provide palliative care in hospitals, while Ontario, Quebec and B.C. have opted for palliative-care residences, Saskatchewan and New Brunswick for palliative home care.

What is clear, Ms. Fairclough said, is that end-of-life care is not as organized or as appropriate as it should be.

Cancer is the leading cause of death in Canada, accounting for 30 per cent of all deaths. In 2012, it is estimated that 186,400 Canadians will be diagnosed with cancer and 75,700 will die of some form of cancer.

Sharon Baxter, executive director of the Canadian Hospice Palliative Care Association, said that while the report shows shortcomings, relatively speaking cancer patients have the best access to palliative care because the course of the disease is largely predictable and the cancer community is very organized.

About 16 to 30 per cent of Canadians currently receive palliative care at end of life, depending on where they live, and fewer still get grief counselling and bereavement services. “Things are changing but there needs to be a recognition we can do a lot better,” Ms. Baxter said.

She stressed that having the appropriate end-of-life experience depends largely on the health system being organized and structured to care for people in a timely, appropriate manner and in the best setting possible.

“It’s going to be better and less costly to provide most palliative care in the community setting – in residences or at home – but you have to make the investment,” she said.

The new report provides several clues that the best choices are not always being made, at least for cancer patients. For example, 22 per cent of cancer patients are admitted to hospital solely for palliative care, and 34 per cent of patients who have been deemed to be in a palliative stage of cancer spent more than two weeks in hospital. Further, one in four cancer patients had multiple hospital admissions in their last month of life. All these data suggest there is a lack of services in the community, and hospital is, by default, the place to die.

One of the most positive aspects of the CIHI report is that there is little evidence of overtreatment at end-of-life for cancer patients. The data show that only 3 per cent of patients received chemotherapy in their final two weeks of life and only 8 per cent died in the intensive-care unit. But, again, these numbers suggests the vast majority of terminal cancer patients are stable and their palliative care could be administered outside of the hospital.

Ms. Barrett, for her part, said she hopes that every Canadian, when losing a loved one, will eventually have the kind of support and care her mother did.

“I know it sounds corny but the care was so good that, when the end came, it was almost like being in heaven with her.”

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