End-of-life care: Assist your loved ones with clear instructions

2016-andré_picardWith the introduction of Bill C-14 (medical assistance in dying legislation), the debate around assisted death is hitting a fever pitch. But let’s not forget that, no matter what the final legislation looks like, very few people will actually avail themselves of a hastened death.

About 99 per cent of people will die the way they do now – in a highly predictable but largely unplanned manner. As a result of this lack of planning – and, in large part, our squeamishness in talking about death when we’re well – far too many patients will die in a manner that’s completely at odds with their personal wishes.

If you want your wishes respected, you have to express them. Most Canadians don’t do so.

A poll commissioned by the Canadian Medical Association, for example, found that 95 per cent of people think that talking about death with a loved one is important, but only 30 per cent have done so, and a mere 16 per cent have taken concrete action as a result. The principal reason people give for avoiding “The Conversation,” and making concrete plans, is that it creeps them out.

What is creepier than acknowledging we will die is the idea that a stranger – a physician, or the courts – could decide how we live out our final weeks, days and hours because we have remained silent.

Many will recall high-profile U.S. cases such as that of Karen Ann Quinlan – a woman who spent 10 years in a coma after doctors refused her parents’ wishes to disconnect her respirator – and Terri Schiavo – a woman in a permanent vegetative state whose husband and parents fought a bitter court battle over whether her feeding tube should be removed. Of course, not every death will result in an epic societal battle about the meaning of life and death. But it is all too common that families are torn apart by fights about end-of-life decisions, a scenario that can be avoided if a person leaves behind clear instructions about who will be their substitute decision maker, and guidance about how that person should act. For example, you can make clear that you don’t want extraordinary measures such as having your heart restarted at end-of-life (often referred to as a DNR – a do-not-resuscitate order).

These are discussions that should be had around the kitchen table, but also formalized in writing with your physician and lawyer. Oddly, many people go to great pains to write a will that sets out how their assets will be distributed after death, but far fewer set out how they want to be cared for in their final days.

There are actually good workbooks available, free of charge online, that help get the process started. They are part of a larger initiative by the National Advance Care Planning Task Group, a group made up of members from health care, law, ethics, research and non-profits that has set out to get more Canadians to draft advance care directives, urge physicians and lawyers to make that conversation a routine part of their consults, and launched a public awareness campaign entitled “Speak Up.”

Many people take the view that “you die when you die,” and there’s not much point planning.

The reality, however, is that how and where we die is largely predictable. Five of the six leading causes of death – cancer, heart disease, stroke, COPD and diabetes – are chronic illnesses (the sixth being accidental injuries such as those sustained in motor vehicle crashes) and they account for 70 per cent of all mortality.

We know, too, that 64 per cent of deaths in Canada occur in hospitals, another 35 per cent are non-hospital deaths which includes nursing homes, hospices and private homes, and the other 1 per cent occur elsewhere. (Sadly, only 16 per cent to 30 per cent of patients get hospice or palliative care.)

When you’re in an institution – where 90 per cent of people die – it’s particularly important to have your wishes stated clearly to avoid overtreatment.

If nothing else, the debate about assisted death should inspire us to become a lot more proactive about our end-of-life wishes.

After all, the assisted death debate is, above all else, about patients maintaining a modicum of control over how they live and how they die.

It’s your life. You should have the last word.




The Globe and Mail

Published Tuesday, Apr. 19, 2016 6:00AM EDT

Last updated Monday, Apr. 18, 2016 5:40PM EDT




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