Planning for Things No One Wants to Talk About: Advance Care Planning and the Need for Frank Conversations
Benjamin Freeland, MA | Communications Advisor, Palliative Institute, Covenant Health
If you had to decide whether to undergo uncomfortable treatments in the hopes that they might prolong your life, how would you decide? If you needed to make health-care decisions for someone near you, would you know what was important to them? Advance care planning (ACP) lets you reflect on and discuss your wishes for health and personal care ahead of these decisions. A single conversation can make all the difference.
Vic Mitchell has always been comfortable talking about loss. Born in Northern Ireland, Vic lost his father in the infamous 1953 Princess Victoria ferry disaster. While he grew up in a happy home with his mother and stepfather, he was always struck by his mother’s silence around his birth father.
“She never talked about him,” he said. “That’s just how people coped.”
Vic’s openness to discussing death has persisted to the present and helped him navigate the loss of his wife Lori from leukemia in 2014.
“It was out of the blue,” says Vic of her illness.
“After diagnosis she underwent a bone marrow transplant. Tragically, the transplant worked except for one cell. She then recognized that to continue living she would have to continue chemotherapy for the rest of her life.”
For Lori, there was no question of what to do. She decided to prioritize comfort and 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, Vic has immersed himself in his work as a patient advisor for Alberta Health Services. In this role, he helps people begin their cancer journey and encourages them to communicate their wishes and draft personal directives, wills, and other instructions. He is also proactive in his own planning.
“I’ve seen it be an absolute gong-show, where nobody knows what’s going on,” he explains. “Hence I always keep my Green Sleeve with instructions on top of the fridge. I recently had a Zoom meeting with my children, where we went over my will page by page and discussed the details. It’s important to talk about these things when you’re healthy because things can go south in an instant.”
Vic’s wife was fortunate enough to be able to communicate her wishes herself. In the case of David Schneider, 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. A hospital exam revealed she had suffered a severe internal brain injury from which she would likely never recover. David’s sister asked him and his other siblings if they knew anything about their mother’s wishes regarding medical efforts to prolong her life.
“I recalled one casual conversation that I had had with her many years previous, when she made it very clear that she didn’t want any extraordinary care in hospital,” David explains.
“I shared that 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 and advance care planning.
“I had no prior knowledge of palliative care. Even as they took my mother to the unit, I really had no idea what it entailed. It was only after being there for several days that I came to understand what it was,” he says.
Palliative care is care to relieve the symptoms and stress of living with a serious illness, with a focus on achieving the best quality of life possible. It is sometimes referred to as comfort care, supportive care, or symptom management.
More than half of Canadians report having had someone close to them receive palliative care within the last decade. Despite this, a 2016 poll revealed that forty-two per cent of Canadians were unfamiliar with palliative care, while less than half had talked about their care preferences.
Vic asserts that change is needed around how we discuss — or rather don’t discuss — serious illness and death.
“Nobody wants to talk about death,” he explains. “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 ACP and palliative care, visit the Covenant Health Palliative Institute’s Compassionate Alberta website. Its resources include the My Wishes Alberta workbook aimed at helping people determine their care preferences and the Plan Ahead Toolkit designed to support ACP workshop facilitators. It also includes Understanding Palliative Care, an interactive learning module designed to increase awareness of palliative care.
Ben Freeland is a professional writer and a communications advisor with Covenant Health’s Palliative Institute and the webmaster for CompassionateAlberta.ca. Last year, prompted by his work for the institute, he did his own advance care planning, knowing that he didn’t want the people he loves to have to make impossible decisions amid the stress of a medical emergency.
This article was originally published in the Centre for Public Legal Education Alberta’s LawNow: Relating Law to Life in Canada magazine (April 2023) at lawnow.org. It is reprinted here thanks to LawNow and with the permission of the author who shortened it for us for this issue.