When you think about the end of your life, do you worry about being alone or being a burden to the people you love? Does the idea of losing your mobility or being unable to communicate make you worry? Do you hate the idea of being kept alive by mechanical breathing machines when you have no likelihood of recovery?
And if you had a choice in your last few days, would you die in a hospital or a hospice or at home? Would your family be in the room? Would there be music playing? Photos all around you?
It isn’t easy to ponder the end of your life, says Constance MacIntosh, a health law professor at Dalhousie University, especially when you feel healthy and invincible or find yourself staring into the uncertainty of a global pandemic — even one like the new coronavirus, which has a relatively low mortality rate.
But the fact that it isn’t easy to think about losing capacity or dying is the only real drawback to creating an advance directive, MacIntosh says.
“If you do it when you are healthy and not actually about to need to be making those decisions, then the benefits are significant. You know your wishes are known and can be followed.”
The COVID-19 outbreak has people thinking plenty about the end of their lives if the recent spike in Canadians making wills is any indication. But preparations aren’t just about what happens after you die.
Advance directives, also known as living wills, medical directives or advance decisions, make it possible for you to receive the health care and medical intervention you want even after you’ve lost the capacity to verbalize that.
“I think people are seeing their own mortality right now in a way they might not have otherwise,” says MacIntosh. “But really, everybody should have one of these because you could fall off a ladder or get hit by a car, so having one of these things in place first will just make everything so much easier for those around you.”
Evidence indicates that slightly less than a third of Canadians have an advance directive, says Lorian Hardcastle, a professor at the University of Calgary who specializes in health law and policy.
Yet, she says, if Canada finds itself in a situation similar to Italy, where doctors have had to pick between patients in need due to equipment shortages, they’ll be helpful. (That scenario is one health authorities across the country are now preparing for, even though the overall fatality rate for COVID-19 is low.)
“A pandemic is the sort of situation that brings into focus the importance of advance planning for people who maybe wouldn’t otherwise think of it,” she says.
Ultimately, such a directive helps you make sure your wishes are followed, says Jocelyn Downie, the James S. Palmer Chair in Public Policy and Law at Dalhousie University — which also benefits your family and health-care providers.
“It is a gift to your loved ones; it takes the weight of decision-making off their shoulders,” Downie says. “They’re effectively an advocate for your wishes rather than thinking, ‘I am the one making decisions to withhold or withdraw treatment.’”
When you practise physical distancing, it’s not just about you — you’re helping prevent the virus from spreading, which can prevent a surge in patients needing critical care that overwhelms the system.
A living will also helps others, Downie says.
“You’re removing an emotional burden from others by being very clear about what you would want, and that is a gift given how much of an emotional burden everyone is under at the moment.”
Downie, Hardcastle and MacIntosh say it isn’t that complicated to set up an advance directive. One of the biggest myths is that you need a lawyer, MacIntosh says.
“The key things are that you need to be the age of majority and you need to sign it and it needs to be witnessed,” she says. “There’s no monetary barrier to getting one.”
Many provinces have easily accessible sites to help get you started, Hardcastle says.
“Not only do they help guide you through the medical decisions that might arise, but they also specify in plain language… what an advance directive or living will might look like.”
It’s helpful to get specific, says Downie, who helped create a Personal Directive App for people in Nova Scotia. The specifics matter, she says, because if you “don’t know the kinds of things that need to be talked about, then you can end up in a circumstance that was unpredicted in the course of the conversation.”
As a starting point, the Ontario advance care planning workbook recommends asking yourself a few questions:
- When I think about death, do I worry about certain things happening, like struggling to breathe, being in pain, being alone or losing my dignity?
- What do I value most in terms of my mental and physical health? Is it being able to live independently, being able to recognize others or being able to communicate with others?
- What would make prolonging life unacceptable for me? If I could not communicate with people around me, if machines were keeping me alive but I had no chance of recovery or if I had no control of my bodily functions?
- Do I have any spiritual or religious beliefs that would affect my care at the end of life?
- If I were nearing death, what would I want to make the end more peaceful for me?
These aren’t easy questions or conversations. Still, MacIntosh says:
“Everyone I know who has done one said it did give them a real sense of peace of mind.”
For information on how to make your own advance directive in whichever province or territory you live in, visit here.