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What to consider when outlining personal end-of-life care decisions

Father Victor Fernandes puts on personal protection equipment prior to visiting with a patient in the COVID-19 intensive care unit at St. Paul's hospital in Vancouver, Tuesday, April 21, 2020. The COVID-19 pandemic is forcing a number of people to start preparing for the worst-case scenario.While drafting a will is a good step, experts say it's equally important to lay out your wishes for end-of-life treatment and name someone who can make decisions about your personal health care if you're unable to.
Image Credit: THE CANADIAN PRESS/Jonathan Hayward

The COVID-19 pandemic is pushing a number of people to start preparing for the worst-case scenario.

While drafting a will is a good step, experts say it's equally important to lay out your wishes for end-of-life treatment options and name someone who can make decisions about your personal health care if you're unable to.

Dr. Chantal Perrot, a Toronto physician and psychotherapist, says she's seen an increase in the number of people wanting to make clear their end-of-life care decisions since the coronavirus pandemic reached North America last month.

And she encourages more people to think about it, especially now.

Some advanced treatment methods for COVID-19 symptoms can be especially tough on the body, including mechanical ventilators, and severe coronavirus cases may require even more interventions.

In cases where patients' health and recovery prospects continue to worsen, families have to make difficult decisions about when to take their loved ones off of life support, using their previously discussed wishes as guidance.

"If you're lying in a hospital bed and unable to speak for yourself, you want someone who knows you well enough, and knows what you would want, to be making those decisions," Perrot said. "(You don't want) some stranger, some emergency room doctor or ICU doctor who doesn't know your values, your principles, what's important to you in life making that call."

While the global pandemic has some Canadians more focused on such decisions, Perrot recommends we should have them ready at any time, in case of any emergency.

She says people need to think about a number of scenarios when drafting their end-of-life care instructions, including what kinds of medical interventions they want, and under what circumstances.

"There are some people who might want medical intervention at any cost. Some would say 'I don't care, being alive is more important to me than anything else,'" says Perrot, who's also a board member with the organization Dying With Dignity Canada, a charity that advocates for end-of-life rights including assisted dying.

"And others who would say 'it's quality of life and if I can't expect to get off this ventilator and live life the way I was before then I don't want interventions.' And then, most of us are going to be right in between."

Some provinces have encouraged extra steps to ensure an individual has their end-of-life care instructions with them in an emergency.

Alberta's Green Sleeve program, described on the province's health care website as "a medical passport," is a green folder used to store your directives and taken with you when you need hospital care.

The website suggests keeping your Green Sleeve on or near your fridge when not in use — "this is where health responders are trained to look in an emergency."

Speak Up Canada, an advanced care planning resource, offers on its website printable wallet cards, where a doctor or paramedic could find the name and number of your "substitute decision-maker."

The title for your substitute decision-maker may differ from province to province, according to the Government of Canada's website. Typically they are called powers of attorney (for personal care). End-of-life care plans or advanced care plans can also be listed as personal or health directives.

There are a number of online templates of forms that can be used for guidance when setting out end-of-life care plans, and Perrot suggested writing out decisions and bringing them to a lawyer to discuss with, then storing them with wills and other important documents.

Toronto lawyer Shael Eisen, who has 20 years experience in estates law, says Ontario residents, as well as those in most other provinces, can draft power of attorney for personal care forms themselves. They just have to be handwritten and signed by two independent witnesses.

How legally binding can these written out end-of-life care decisions be?

Eisen says it's possible another family member could try to override them, but those scenarios would typically need to be settled in court in what he called "nightmare cases" for judges.

Instead, doctors will usually respect the end-of-life care protocols as outlined by a power of attorney.

"If you have a power of attorney document and you say in the document: 'This is what I want, I don't want any heroic measures.' OK, doctors will to a large extent follow it," Eisen said. "There's been some court cases about whether that's specific enough.

"But by and large in this time period, if there's a power of attorney they will go with that."

Perrot said people can always change or add to their own end-of-life care decision documents, as long as they are of sound mind when doing so.

When it comes to most requests, individuals can be fairly specific, Eisen said.

"You can say: 'No, I don't want you to do this or that.' But what you can't say is: 'I want you to kill me, I want you to give me a shot,'" he said. "That you can't say."

Discussing death and worst-case scenarios can be "highly anxiety-provoking" for some people, said Perrot.

She recommends making conversations about death more commonplace, to ease that stress, and to start thinking about end-of-care scenarios early on.

"We balance our chequebooks, we plan our RRSPs, we make a will and we set out a power of attorney — we just have to sort of include this in the natural course of things as opposed to it being a horrifying end of life, tragic thing," she said. "Death also should be looked at as part of life ... even though it's obviously very sad and certainly can be tragic, and losing somebody to death is always very, very difficult.

"But I think being able to look at death as a normal part of the life cycle is important."

Designating a power of attorney for end-of-life care decisions can also give people a sense of peace.

"You know that somebody that you trust, somebody that you have chosen, not strangers, will be making these decisions for you," Perrot said. "You can feel confident that they will make a decision as best they can that's in your best interest according to your wishes. And that does provide people a lot of relief."

This report by The Canadian Press was first published April 23, 2020.

News from © The Canadian Press, 2020
The Canadian Press

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