Talking about dying can seem scary, but a Toronto group wants to change that.
In Canada, efforts to break the stigma around childbirth and sexual health have led to more open conversations about once-taboo topics. The same can’t yet be said about dying and end-of-life care.
Toronto’s Dying Well Collective is trying to change that. Working out of the Centre for Social Innovation in the Annex, co-founders Glenda Myles and Susan Dawson are trying to start more open conversations about death and advocate for better community resources for people at the end of their lives.
“Our goal is to allow people to die in the manner of their own choosing. If people want to choose to die at home, we should be able to create a system that supports that,” Myles says. “I don’t think you do that by creating another layer of the medical system. I think you do that by creating community or community access to some of the people who have that knowledge base.”
Past surveys have shown that most Canadians would prefer to die at home or in a home-like setting. But access to residential hospice services is often limited—even in big cities like Toronto—and the realities of supporting someone in the final stages of their life at home can come as a shock to family or friends who become caregivers. Myles wants to make community end-of-life care resources more accessible and create a more open dialogue about what “dying well” looks like.
“Say you’re lucky enough to have a key caregiver…there’s a lot of pressure put on them to care for that person 24 hours a day,” Myles says. “There’s this whole piece where we can support the person who’s dying, but there’s a lot of family dynamics around it.”
The Dying Well Collective is also one of the Toronto groups running Death Cafes every month, where people come to have conversations about dying. Myles is even taking the recent “death” of Honest Ed’s as an opportunity to get people talking about grief and loss with an interactive memorial that will let people share their memories of the Toronto landmark.
“We’re creating as many spaces as we can to engage in the conversation about dying, and to potentially provoke people as well,” she says.
Myles and Dawson both work as “death doulas,” advocates that can be hired to help people and their families at the end of life. Similar to birth doulas—people who support women throughout the labour and delivery process—death doulas don’t offer medical services. Myles says the work can involve a wide spectrum of supports, and she often helps guide families through the final stages of a loved one’s death, including bereavement support in the aftermath.
Myles started working in death and grief support after caring for her parents when they were each diagnosed with cancer, dying about eight months apart. Now she wants to empower people to understand the dying process and reach out for help—ideally, well before they may need it.
Unlike palliative health care specialists who might make weekly or daily home visits, death doulas can be hired to stay with a family around the clock in a dying person’s final days, a process Myles calls “death vigiling.”
“It’s just holding that space for that person or for their family, answering questions, because quite often that’s what happens,” she says. “We are so removed from death. There’s no association with the dying process. People don’t really know what’s happening or what’s going to happen.”
Since starting up in 2016, the Dying Well Collective has amassed 60 volunteers throughout Ontario that offer a variety of end-of-life resources and support, including vigiling. She hopes that more awareness about options for what end-of-life care can look like will also lead to more open conversations about dying.
“People are kind of scared of it, but they’re also oddly drawn to it at the same time,” she says.
“When I tell people what I do, they look at me funny—but then they start to ask questions.”