In 2012, Devon Spicer was rushed to the Ottawa Hospital and placed in the civic intensive care unit. He was diagnosed with meningitis and remained unconscious, hooked up to a series of machines.
After only a week, Spicer, who was 55-years-old, was taken off life support.
Sandra Spicer, his younger sister, was with her brother when he died. If she had known what she now knows about dying and death, she said she would have done things differently.
At 59, Spicer had her heart set on becoming a death doula: a person who offers guidance and emotional support to dying patients and their loved ones.
That passion emerged after attending her first death café — a space where people discuss death and grief — last fall.
“You know when people say they’ve ‘found their tribe?’” Spicer said. “I feel like that’s how it is for me.”
At the beginning, this was uncharted territory for Spicer, who said she didn’t know what a death doula was prior to attending the café.
But after speaking with death doulas and learning about their responsibilities, Spicer felt deeply connected to the work they do.
Death doulas play an important role in end-of-life care – not just in the services they provide to dying patients, but as part of a broader goal of normalizing death. They aim to destigmatize how mortality is discussed in society and with doctors.
Spicer joined the Home Hospice Association in Ottawa, which offers extensive one-year training for death doulas.
“When people hear the words death doula, they think morbid, dark thoughts,” Spicer said. “But how a birth doula helps someone through that passage, this is the same thing. It’s just at the other end.”
Death doula work goes beyond bedside support, according to Spicer, extending to caring for the person throughout the whole process of dying.
At the home hospice association, death doula care is administered through four care domains: planning (including paperwork and logistics); legacy (helping a patient communicate their final wishes); vigil or bedside support; and grief and bereavement support for the patient’s inner circle.
“If you would’ve asked me a year ago, I wouldn’t have thought about all the other parts that go with it,” Spicer said. “I wish people knew death doulas can help with all that comes before the actual death.”
Since embarking on her death doula training and becoming certified in January, Spicer said she often reflects on her brother’s end-of-life care.
“I would have spent more time at the hospital talking to him and not felt uncomfortable or silly sitting, talking to someone who is in a coma,” Spicer said.
Supporting queer seniors
Sarah Rodenhizer and Rhonda Garnier, co-leads of the home hospice association’s No Place Like Home program, say they’ve observed a growing trend in 2SLGBTQ+ residents having to “recloset” themselves in long-term care facilities, fearing discrimination from staff and non-2SLGBTQ+ residents.
The No Place Like Home program aims to accommodate the needs of 2SLGBTQ+ seniors by making long-term care facilities and end-of-life care services safer, prioritizing affirming language, respecting chosen families and creating spaces for affection.
“They’re not getting the security or health care [they deserve] because their past lived experiences have taught them that they’re not safe,” Garnier said.
Part of integrating accommodations includes professional development with long-term care facility staff and using practical tools adapted to be more inclusive, like advanced death planning, Garnier said.
Another part includes working with 2SLGBTQ+ seniors to understand their lived experiences, which are then relayed to staff. They also determine what accommodations are missing from care, she said.
Garnier and Rodenhizer contacted and secured two long-term care facilities in Toronto as pilot locations.
Their goal is to bring this program to Ottawa and across Ontario, after data from their entry and exit surveys reveal success. Though they described success as difficult to pinpoint and an ongoing part of the research process, they said success is measured through comparative data from residents, staff and visible environmental changes.
“I think if we can get exit data that says, ‘I have better awareness and that awareness is making me more intentional in my work,’ that will be a real win,” Garnier said.
Death doula involvement
Spicer, a member of the 2SLGBTQ+ community, is the only Ottawa-based working group member of the No Place Like Home program. She hopes to become involved in workshops to help educate staff in long-term care facilities, she said.
“Affirming care is essential. It’s not optional, they deserve it,” Spicer said.
When the program officially launches, one of the ways 2SLGBTQ+ residents will be accommodated is through the support of death doulas within HHA’s four domains of care.
“There’s a misconception that they’re just there at the end, holding the person’s hand and that’s it,” Spicer said. “I think if people knew all these things, even if they weren’t planning on having a death doula, they could feel more comfortable, in control and prepared.”
‘Dying is a basic human right’
In 2017, Tracey Robertson stood by her grandmother’s side as she laid on a hospital bed, battling kidney failure. Robertson was there not just as a granddaughter, but as a death doula.
While guiding her grandmother, Irene, through the process of dying, Robertson encouraged her father to sing a Baptist hymn from his childhood. As the room filled with the voices of her grandmother’s loved ones, she took her last breath.
Death and dying have developed a distorted reputation as being an isolating experience, Robertson said. This misconception comes from Canada’s health-care system lacking sufficient capacity to increase the level of treatment for dying patients, she said.
But to Robertson, “dying is a basic human right.”
In 2014, Robertson, and co-founders Glen Burkholder and Jeanne O’Kell, decided more needed to be done to improve end-of-life services. The trio founded the first chapter of the Home Hospice Association’s Ottawa Branch. Since then multiple branches have opened Canada.
The association offers end-of-life-services through death education and support from death doulas and healing groups.
Before founding the HHA, Robertson was interested in learning how other countries administered end-of-life care. While presenting at the Association of Wish Granting Organizations in the United States, Robertson learned end-of-life care was brought directly to patients. She believed a similar care model could be adopted in Canada, but took it a step further.
To avoid excluding certain groups from care, the association established pre- and perinatal hospice care, pet loss programs and end-of-life support for people experiencing homelessness, the 2SLGBTQ+ community and other racialized groups.
“We have the most intense, all-encompassing death doula program, anywhere in the world,” Robertson said. “We’re in the care mobilization business. It’s not about how fast we can get through the training so we can bring more people in, it’s all about what a death doula needs to serve the needs of their community.”
It starts with death education
End-of-life care needs to be more widely accepted for services to begin improving, according to Robertson.
Robertson said North America is a “death averse society.” A 2014 study by the Canadian Medical Association Journal revealed many physicians are uncertain how to discuss death with patients.
In 2017, the HHA committed itself to destigmatizing death discussions in clinical and social contexts through death cafés.
According to Spicer, death cafés are “group directed,” meaning a facilitator guides attendees from all walks of life through prompts to spark insightful conversations.
“I don’t show up with an agenda, I’m just there to make sure everyone’s okay, and everyone has the space to speak, if they want to share,” Spicer said. “Often a good jump off point is to ask people’s experience with death, from there organically a discussion grows.”
Unlike a grief support group, death cafés are opportunities for people to explore ideas.
“Discussions like these are important because it helps to normalize talking about death,” Spicer said.
Death cafés are offered in-person and virtually at no charge to the public at the HHA.
The association credits the inspiration of their death café program to Jon Underwood, who held the first death café in the United Kingdom in 2011.
Since then, there have been more than 20,000 death cafés in over 90 countries, according to the official death café website.
“There’s a lot of stigma around death,” Spicer said. “We’re giving people the space and permission to talk about it.”
Cynthia McCleery, who previously attended three death cafés and trained as a palliative care volunteer at the Brockville General Hospital, said she learns something new every time she attends.
“There’s so many topics that death, dying and sickness bring up,” McCleery said. “Everybody has their own perspective and their own reason for being there.”
McCleery said she believes the HHA’s efforts to support 2SLGBTQ+ residents are “fabulous,” especially because her brother, who passed five years ago, was gay.
She said she particularly admires the specialized group death cafés that provide a safe space for 2SLGBTQ+ discussions.
Death is not an emergency
From the outset, Robertson said her goal for the home hospice association has been to deliver end-of-life care to all.
“When I think about what we do, it’s that we slow everything down so we can see dying as a natural part of life,” Robertson said.
“It doesn’t need flashing lights or emergency sirens. It’s something we all are going to experience,” she said. “Why can’t we just think about how we can normalize the experience so that we can do everything that’s possible for the person who’s received the diagnosis and those who love them?”
Spicer said she has only reached the tip of the iceberg when it comes to her work as a death doula. With every dying patient she will support, she hopes to honour her older brother, she said.
“I think about how I could have made it better for him,” Spicer said.
“I can’t change how it must have felt for him, but maybe I can help someone else who could be in the same situation.”
Featured image provided by Sandra Spicer
