Most Canadians have no written plan for end-of-life care, poll finds

Rather than ever lose his ability to think, remember or recognize his wife and children, Dr. Daren Heyland would sooner be dead.

The critical care doctor and professor of medicine at Queen’s University also states in his personal directive — a legal document that set outs the treatments he would and would not want should he ever lose the capacity to speak for himself — that he would rather die than be left dependent on others to feed, dress, bathe or otherwise provide total care for him.

This article was published by The Ottawa Citizen on July 26th, 2012.  To see this article and other related articles on The Ottawa Citizen website, please click here

Too many times Heyland has stood at the foot of a patient’s bed in the intensive care unit and thought to himself: I never want to die this way.

Death is inescapable, the “singular inevitability” for all of us. Yet the majority of Canadians — 80 per cent — do not have a written plan about what life-prolonging treatments they would accept or reject at the end of life, and fewer than half have discussed the issue with their families, according to a recent Ipsos-Reid national poll.

Only 46 per cent have designated a substitute decision-maker, someone to speak on their behalf if they became incapacitated.

Would the patient want to be connected to an artificial ventilator, unable to swallow, talk or breathe for themselves? Would they want to be tube-fed or resuscitated if their heart stops, or completely sedated and turned and fed, with no perception of anything around them?

Without any guide posts set by the patient, the system takes over. The fallback, doctors say, is to keep going — to provide increasingly intensive and invasive care that ultimately prolongs dying, leading to a poorer quality of life, unnecessary pain and suffering and increased rates of depression, anxiety and even post-traumatic stress disorder for the surviving family.

“So three to six months later, they’re still reflecting, ‘What was that all about? Why did mom have to undergo all that aggressive care at the end of life, and for what purpose?’” says Heyland.

“We’re harming people at the end of life when we should be celebrating their lives and providing them with dignified comfort measures.”

In a recent study, Heyland and colleagues interviewed elderly hospital patients considered to be near death and asked what kinds of life-sustaining treatments they would or would not want. Then they looked at the resuscitation or “code status” recorded on their charts. The patient’s preferences agreed with the order on the chart in only about a third of cases.

And most of the disagreements related to patients wanting simply to be made comfortable in the face of death, but their chart documented “full code” — meaning CPR and every other possible measure would be used to try to save their lives.

In other cases, people are agreeing to life-prolonging interventions without fully grasping what is it they are signing on for, doctors say.

For example, CPR, cardiopulmonary resuscitation, performed in a real world intensive care unit isn’t like the sanitized and “miracle recovery” versions depicted on TV. CPR can be almost violent and sometimes lead to broken ribs, punctured lungs and a high rate of stroke and serious brain injuries. The survival odds are slim.

© The Ottawa Citizen