High price of compassionate care

TheStar.com – Opinion – High price of compassionate care
September 22, 2008. Carol Goar

They would be the last people to ask for help. So the Canadian Cancer Society is speaking up for the country’s 1 million unpaid caregivers in this election.

“We’re doing it because of the importance to our patients and their families,” said Dan Demers, director of public issues for the charity. “These people are the invisible backbone of our health-care system.

“Many are living in isolation, barely making it. It is simply not acceptable for a person already giving so much to support others to carry an additional burden of extraordinary costs and lost income.”

Caregivers contribute more than $6 billion to Canada’s health-care system. The vast majority – about 77 per cent – are women.

They deplete their savings, use up their vacation time, miss workdays, then drop out of the workforce to care for loved ones who are seriously ill or dying. They get little support from the medical system. Many put their own health at risk.

Ottawa does have a compassionate care leave program, which allows workers to claim up to six weeks of Employment Insurance when caring for a gravely ill relative or friend. But last year only 5,676 people took advantage of it.

It is not hard to understand why:

* To qualify, claimants must provide a doctor’s certificate attesting that their loved one faces “a significant risk of death” within 26 weeks. Not only is this rule inhumane, it is absurd. Death does not conform to bureaucratic timetables.
* The paid leave is far too short. Spouses, siblings, children and companions typically spend months – not weeks – providing end-of-life care.
* The program offers nothing to workers who don’t qualify for EI. Part-time, temporary, casual and self-employed members of the labour force are not covered.
* And three out of four Canadians are unaware that it exists.

The government knows there’s a problem. Its actuaries predicted that 270,000 Canadians would apply for the benefit when the program was launched in 2004. An annual budget of $190 million a year was set.

The first year, 4,782 workers – 1.8 per cent of the expected number – applied.

The second year, the rate crept up to 1.9 per cent.

Last year, it reached 2.2 per cent.

So far, just $23.7 million has been spent.

“There’s money in the EI fund,” Demers pointed out. “The government should fix the program so it becomes usable.”

The Canadian Cancer Society believes the benefit period should be extended to 26 weeks and extended to part-time, self-employed and temporary workers.

It would like to see a complementary program set up for retirees and homemakers, who are ineligible for EI coverage.

And it is asking that a panel of experts review the tax system, which penalizes caregivers in dozens of ways.

The charity’s overarching objective is to confront Canada’s political leaders with a reality that its members see daily: families struggling to support a sick member.

Last month, in anticipation of a fall election, the Canadian Cancer Society commissioned a national poll by Innovative Research Group. The firm interviewed 1,015 individuals over a seven-day period. (Margin of error: plus or minus 3 per cent, 19 times out of 20).

Fifty-two per cent expressed concern about the financial impact of caring for someone close to them.

Sixty-one per cent said they or their spouse/partner were likely to become caregivers in the future.

Fifty-nine per cent said they would look favourably on a party that offered increased support for caregivers.

This is an issue that crosses party lines. It affects families in all regions and socio-economic classes. It is particularly important to women.

“Society has to get used to the idea that we need to talk about services for the dying,” Demers said. “An election is the right time to have the discussion.”

Thousands of Canadians would agree. But they aren’t the type of voters who raise their voices, bemoan their plights or mount slick ad campaigns. They’re too busy trying to do what’s right.

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