Don’t deny the last wish

Call it a last wish denied. Thousands of dying Ontarians are not receiving the end-of-life care they want due to an appalling lack of high-quality palliative care. Often it means their final days are spent in the intensive care unit of a hospital instead of comfortably at home, making the existing system unnecessarily costly as well as cruel. And it’s all poised to get worse as the province’s growing number of seniors inevitably die.

Change is obviously needed. And some welcome steps forward are outlined in a new report calling for dramatic improvements to end-of-life care in Ontario.

There’s a need for more professionals trained in delivering palliative care, according to Health Quality Ontario, the provincial health advisory agency that produced the report. Patients should be encouraged to make their end-of-life desires known to family members and to health-care providers. And those wishes should be respected.

“Death is an intensely personal experience which must be guided through discussions in advance with medical professionals and loved ones,” says Dr. Joshua Tepper, a family doctor and head of Health Quality Ontario.

But this doesn’t happen often enough. It’s estimated that fewer than one in three people with chronic illness currently receive high-quality, team-based palliative care. That leaves thousands of Canadians each year suffering an end that could have been made better.

The study cites a national survey showing that 70 per cent of hospitalized elderly patients preferred “comfort measures” over high-tech, lifeprolonging treatments. But more than half still ended up in intensive care.

Simply put, there’s a mismatch between the endof-life care that many patients want and the treatment they actually get. All too often, the desires of those who are about to die are not properly honoured.

The new report follows a compelling analysis of Ontario palliative care by auditor general Bonnie Lysyk. She estimated the province needs between 755 and 1,080 hospice beds to meet the needs of palliative care patients in a cost-effective way. It now has only 271.

But the system needs more than an overdue investment in additional beds and in palliative professionals. A change of attitude is necessary.

The Health Quality Ontario study notes that one reason some people don’t get the end-of-life care they want is a reluctance to discuss the issue in advance, even with a family member, friend, lawyer or financial adviser. A survey last year found many said they’re afraid to upset anyone, or don’t know enough about their options.

Some wait too long, until their illness has passed the point where they can clearly express their wishes, and they end up in intensive care hooked up to life-support machinery they didn’t necessarily want.

The authors of the report concluded there’s a need for broad public discussion to normalize, or “de-medicalize,” death and dying.

That discussion will need to happen a lot more often in coming years as the population ages. By 2026, the number of Canadians dying each year is projected to rise by 40 per cent, to 330,000 people. And few of them will pass in isolation. Each death affects an average of five other people — family members and loved ones — who are sometimes left in profound distress.

It’s vital to remember that Ontario’s need for improved palliative care isn’t a theoretical issue involving an abstract group of healthcare users. Every person reading this will, at some point, reach the end of their life. How well that transpires very much depends on the palliative care system in place when each of us goes “the way of all the earth.”

As Ontario’s population ages, not enough people who are dying are getting proper palliative care