Advance care planning and the need for frank conversations about death
If you were too sick or injured to make healthcare decisions for yourself, who would make them for you? Advance care planning (ACP) gives you a chance to decide who. April 16 is National Advance Care Planning Day, a day where Canadians are encouraged to engage in conversation with a trusted individual about their end-of-life preferences and to plan for future care by completing a personal directive, a will, and a power of attorney.
Even a single conversation can make the difference between a protracted end of life full of unwanted, potentially uncomfortable medical interventions and a peaceful death surrounded by friends and family.
A story of open conversations
From a very young age, Vic Mitchell has been able to talk about loss. Born in Belfast, Northern Ireland in 1948, Vic lost his father in 1953 in the MV Princess Victoria ferry disaster, in which 135 people died in the so-called “Storm of the Century.” While he grew up in what he describes as a “happy home” with his mother and stepfather, he was always struck by his mother’s silence when asked about his birth father.
“My mother never wanted to talk about him,” he said. “I think that was just how people coped.”
Vic’s openness to discussing death, a topic that for many remains unmentionable, has carried through to the present. The St. Albert native emigrated to Canada in 1976, worked a long career in construction and today remains active as a patient advisor for Alberta Health Services.
Vic’s passionate involvement in the healthcare sector is influenced by his own health challenges (managing celiac disease and surviving stomach cancer in 2008) and by the experience of his late wife Lori who died from leukemia in 2014.
“It was completely out of the blue,” Vic explains.
“We were out to celebrate my 65th birthday as well as my five-year anniversary of being cancer-free, and then three weeks later she was diagnosed. Part of the treatment was a trip down to Calgary so that she could have a bone marrow transplant, and tragically the transplant worked except for one cell. She recognized that in order to continue living she would have to continue undergoing chemotherapy for the rest of her life, so quality of life became the issue.”
For Lori, there was no question of what to do. She made the decision to forego further treatment.
“She decided to stop treatments on Saturday, and she died Wednesday night,” says Vic. “It was that fast.”
In the years since his wife’s death, Vic has immersed himself in the world of patient consultation. In that time, he has helped numerous people begin their cancer journey and has encouraged them to communicate with their families and to draft personal directives, wills and other instructions for loved ones. This experience had led him to be extremely proactive in his own end-of-life planning.
“I’ve seen it be an absolute gong-show, where nobody knows what’s going on,” he explains. “That’s why I always keep my Green Sleeve with instructions on top of the fridge. That’s why I recently had a Zoom meeting with my children, where we went over my will page by page and discussed the details openly. Six months later while talking to my daughter, she said to me ‘I thought you’d had bad news or something.’ It’s important to talk about these things when you’re healthy, because things can go south in an instant.”
A story of chance conversation
Vic’s wife was fortunate enough to be able to communicate her end-of-life wishes herself. In the case of David Schneider, a retired former communications manager with the Edmonton Police Service, it was a chance conversation many years prior with his mother that made the difference.
Several years ago, David and his sister arrived at their mother’s home to find her collapsed and unconscious on the floor. Upon arrival in hospital, an exam revealed she had suffered a severe internal brain injury from which she would likely never recover. David’s sister then asked him and his other siblings if they knew anything about their mother’s wishes regarding medical efforts to prolong her life.
“I was able to recall one casual conversation that I had had with her many years previous, when she made it very clear that she did not want any kind of extraordinary care in the hospital,” David explains.
“It was a half-joking conversation, but it made all the difference to her quality of life at the end. I shared that conversation with my sister, and the hospital transferred her to the palliative care unit, where she died peacefully one week later. Had we not had that conversation, she might still be on life support today.”
For David, this experience was a wake-up call to the importance of palliative care awareness and advance care planning.
“Prior to this, I had no knowledge of palliative care. Even as they took my mother to the unit, I really had no idea what palliative care entailed, and it was only after being there for several days that I came to understand what it was,” he says.
“Had I known more, I would have been able to have further discussions with my mother to make sure we were all clear on what her final wishes were. Instead, we were reliant on me and my memory of a conversation that had been had many years prior.”
Advocating for cultural change
More than half of Canadians now report having had someone receive palliative care within the last 10 years. Despite this fact, a 2016 Ipsos poll revealed that 42 per cent of Canadians were unfamiliar with palliative care. Less than half of Canadian adults (43 per cent) reported having had conversations regarding their end-of-life care preferences.
Vic, ever the passionate patient advocate, feels strongly that a cultural change is needed around how we discuss – or rather don’t discuss – death and dying.
“When my dad died nobody wanted to talk about it,” he explains. “Nowadays still nobody wants to talk about death. We’re not educated to do it. We don’t talk about death until serious illness strikes and it becomes front and centre, and then we’re overwhelmed by it. Grief has a way of coming at you in unexpected ways, and when it does, you’re in no state to make important decisions. You have to have these discussions ahead of time.”
For more information on completing advance care planning and to learn more about palliative care, visit the Covenant Health Palliative Institute’s Compassionate Alberta website. There you will find extensive advance care planning resources as well as advice and tools to start conversations with the people who matter most about death and dying.
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DISCLAIMER The information in this article was correct at time of publishing. The law may have changed since then. The views expressed in this article are those of the author and do not necessarily reflect the views of LawNow or the Centre for Public Legal Education Alberta.