Advanced care planning can mean the end-of-life you want

No one wants to talk or think about their death, but an advanced care plan can make decision-making easier for your loved ones.

Robin Roberts 6 minute read April 14, 2022
Macro of hortensia skeleton flowers

A substitute decision-maker to speak on our behalf can make a very stressful and anxious time a little easier for everyone. GETTY

We’re all going to die. Not today, hopefully. But someday, and the thought of it is hard to wrap our head around, so we try not to think about it beyond, maybe, making a Will.

It’s also difficult to think about what would happen if we were left clinging to life — what if we got hit by a bus, or suffered a debilitating stroke, and a team of doctors was frantically trying to keep us alive? What if we did not want any heroic measures, but we’d suffered a brain injury and were unable to communicate our wishes?

Our loved ones would be devastated, of course. But having an Advanced Care Plan in place that lays out wishes and preferences in the event we are unable to communicate, and establishes a substitute decision-maker to speak on our behalf can make a very stressful and anxious time a little easier for everyone.

Think the unthinkable

The Canadian Hospice Palliative Care Association (CHPCA) and Advance Care Planning in Canada established April 16 as a day to encourage all of us to think ahead to the unthinkable, to ensure our wishes are addressed, and that our loved ones are not left in the dark about what those wishes are.

Karen from Ottawa got to thinking about how she sees her own end-of-life after talking with her mother-in-law about her preferences.

“She’s 88 and had moved in with us last May because of COVID,” says Karen. “And her health was declining, so I started having these ‘what if’ conversations with her, but it was hard to know when to bring it up without sounding morbid.”

Karen used random scenarios (ACP has some tips for conversation-starters) to get at her mother-in-law’s perspectives on the decisions she would want made if she couldn’t communicate, discussions that led Karen to also consider her end-of-life wishes. And just as her mother-in-law eventually did, she filled out an advance care plan. But the conversations to get there weren’t easy.

“My husband does not like having these conversations,” says Karen, who appointed him a substitute decision maker. “But [now] he knows that if I’m incapacitated for six months or more and the prognosis is not good, my preference is that he lets me go.”

“These are difficult conversations but they’re essential to a life well lived,” says Laurel Gillespie, CEO of CHPCA. “But the more that we can plan ahead and have control over it the better.”

We don’t want to plan for death

In 2021, the ACP commissioned a national poll, conducted by Nanos Research, to gauge Canadians’ attitudes about planning for their future care. While 77 per cent felt it was important to talk to their health-care providers about it, only seven per cent actually did. More encouraging though, 59 per cent shared their thoughts with a family member.

But the responsibility doesn’t fall on loved ones or physicians to make important decisions about our care. “We have to become more accountable for what it is that we would like to have happen to us,” says Gillespie.

She says the time to make these decisions known is when we’re healthy and clear-eyed, not when we’ve become incapacitated or been given a terminal diagnosis, because then there’s too much stress and confusion. And an advanced care plan is not only for the elderly.

“This should be part of life planning. It will give you comfort knowing that your family and loved ones know what you would like to have happen, and that someone has agreed to carry out your wishes,” she says. “[Having] someone speak on your behalf to your medical team [gives them] clear focus and direction [so they’re] not running a bunch of tests that you would not want to have done.”

Laws and rules around advance care plans differ in each province and territory, she says, and the CHPCA has a section on its site developed with the Canadian Bar Association that distinguishes those differences.

Advanced care planning is not a Will

Gillespie also stresses that advance care planning is not the same as a Will or the other legal parts of estate planning, which is more about disposition of your property and possessions, as well as appointing guardianship of dependants.

Arin Klug, a former Wills and Estates lawyer and co-founder of Toronto-based Epilogue Wills, which offers Wills online, agrees there’s often confusion around the differences between Wills, powers of attorney (PoA), and advance care plans.

“A Will only takes effect when you pass away,” he says. “A PoA can only have an effect while somebody is alive but incapable of making decisions for themselves.”

He says while powers of attorney have different names in different provinces, all include two types: one for financial matters, and another for health care matters. A power of attorney appoints someone to make decisions on your behalf.  An ACP, on the other hand, is primarily about health care, stating your wishes for medical treatment in the event you can’t speak for yourself, and appointing someone who can. And while powers of attorney are legal documents, an advance care plan is not.

“But the legislation in every province says, basically, that if the substitute decision-maker knows what the person’s wishes were, then they have to follow them,” says Klug. “The ACP is like the accompanying document [to a PoA].”

Without a plan, the government can appoint someone

Gillespie cautions that, in some provinces, if you don’t have proper documentation like an ACP, the government can select someone to make those decisions for you on a hierarchal basis, usually starting with a spouse or partner, then moving down through next of kin. And if you have a family member who you might not trust, that can be a problem.

She also advises not keeping your ACP with your Will or PoA because they’re often not easily located. She says her dream is to see our health cards and/or driver’s licences come with a QR code that links to an ACP.

“The QR code can be protected with passwords,” she says. “It’s been demonstrated with our vaccination records that there are ways of protecting our sensitive information. If you’re knocked unconscious, you likely have a phone. And if you don’t, you have a health card or driver’s licence, and boom, there you go. Nobody’s looking for powers of attorney or a Will, which can take days or weeks.”

Gillespie says it’s important to revisit your plan regularly, perhaps when you graduate from university, get married, buy a house or have a new baby. “There are all kinds of life-altering events that happen as a natural process of living a fulsome life,” she says. “And we often do the estate planning or Wills and we don’t often think about making advance care planning part of our conditional life planning.”

In the end, it’s important to get past the uncomfortable conversations, and document our wishes for those we leave behind.

“It’s the ultimate act of human kindness we can do — and it’s free,” says Gillespie.

To learn more about advance care planning and to download your free workbook, go to Advance Care Planning of Canada.

 

Robin Roberts is a Vancouver-based writer.