The multifaceted program transformed how communities cope with illness, loss and grieving. But the project’s end is just the beginning for better approaches to death.

Ottawa’s Health End of Life (HELP) project Steering and Dissemination Committee. Top row, left to right: Dr. Charles Barrett (committee chair), Dr. Jim Nininger, Dr. Mary Lou Kelley, Jack McCarthy. Bottom row, left to right: William MacDonald (Mac) Evans, Dr. Ian Arnold, Dr. Sarah Todd, Dr. Pamela Grassau (principal investigator).

When the communities involved in Ottawa’s Healthy End of Life (HELP) project reflect on what the project meant to them, they talk as much about realizations that their communities came to as about their achievements.

“There was an unrecognized need,” says Heather McGrath, community facilitator at Orleans United Church. At Christ Church in Bell’s Corners, community facilitator Jen Hubbard says, “Having awareness within the community has shifted the culture.”

At South-East Ottawa Community Health Centre, community facilitator Ann Gallant says, “People said they didn’t realize it was going to be so valuable.”

“It was real, meaningful change,” sums up Dr. Charles Barrett, chair of the Steering and Dissemination Committee for the project, who is with the organization that sponsored the project, Compassionate Ottawa.

Launched in February 2019, the project aimed to support people with advanced age, frailty, chronic and/or life-limiting illness to live at home or in the community as long as possible. The Mach-Gaensslen Foundation supported the project with a grant of more than $640,000 over the project’s three-year lifespan.

“In line with the mandate for the Mach-Gaensslen Foundation provided by its founders Vaclav R. Mach and Dr. Hanni Gaensslen, the Foundation encourages research that supports the mental health of individuals and enhances the resources available to provide that support,” says Dr. Ian Arnold, a member of the Foundation’s Board of Directors. “The HELP research project, using a social science research approach, focused on how the quality of life, and in particular, the psychological health, of persons at the end of life — and those caring for them — could be improved.”

“The Mach-Gaensslen Foundation was very generous in funding HELP Ottawa,” says Barrett. “It was a ‘step outside the box’ for the foundation because it was social science rather than clinical research.”

Taking action based in the community

To support those at end of life, community networks need to be in place. And those who need help must feel comfortable asking for it, according to the original HELP project, developed at La Trobe University in Melbourne, Australia.

Building the networks so that people can ask for, and offer, help, is what HELP Ottawa was about. But the project found that the starting points, routes and destinations for that goal could vary widely.

One of the many unique aspects of the project is that it was both community-based and academic, with researchers studying what worked and what didn’t — an approach called “community-based participatory action,” explains researcher Dr. Lindy Van Vliet.

Van Vliet, a post-doctoral fellow in Carleton University’s School of Social Work, says that, in this type of research, the community is involved in setting the research questions. Community members help design the research and collect and analyze the data. They also put the results into practice. “The research is meant to solve a problem that the community has identified. The community must benefit from the research,” says Van Vliet.

A report by Van Vliet, principal investigator Dr. Pamela Grassau and project coordinator Dr. Lorraine Mercer points to four main findings from the project.

Different contexts

First, the project involved four community “pilot” sites — two faith communities and two community health centres — and each had a unique context. What worked at one site might or might not work at another. “Each site approached it in their own way,” says Van Vliet. The challenges differed, and so did the solutions.

At Orleans United Church, McGrath describes “grief walks” at which parishioners experiencing grief participated in a simple ceremony and walked in the neighbourhood, silently, on their own or with a small group, to devote time to remembrance. Similarly, an outdoor ceremony on All Saints Day during the pandemic lockdown allowed people to share grief for lost friends and family for whom no funeral could be held.

At Christ Church in Bell’s Corners, the shift to online services and events during the pandemic had unexpected benefits, says Hubbard. Parishioners with serious illnesses and disabilities could participate in services and HELP-related workshops virtually. When someone died, the funeral could be streamed online for those unable to attend — both those around the corner and far-flung family around the world.

At community health centres, when professional staff lose clients, Gallant says they may experience “disenfranchised grief” — “it’s this idea that, as a worker, grief is not something you have a right to feel.” To address this, the staff at both community health centres held “good-bye” ceremonies to honour clients who had died. “It was an opportunity to get together and speak the name of people who had died,” Gallant says. Staff members shared stories and cried together.

Barriers to asking for help

Second, researchers found that social barriers prevented people from asking for help.

Encouraging people to ask for help is a struggle, says McGrath. “We grew up in a time when you sucked it up and carried on. You didn’t ask for help,” she says, speaking of the older generation in many churches.

“People are much more comfortable offering help than being the one receiving it,” adds Hubbard.

Particularly for elderly people, the project found, asking for help could lead to a loss of autonomy. Many fear that their driver’s licence will be suspended or that they will no longer be able to live independently.

At Christ Church in Bell’s Corners, the HELP team tried to foster a “community of helpers,” says Hubbard. Because those who need help may not ask for it, those who could help were encouraged to drop in on parishioners who might need help just to chat and check in. The team recognized as well that caregivers need support to care for others. In fact, supporting caregivers was a theme that emerged at all HELP locations. At Christ Church, caregivers also had difficulty finding resources and helping people navigate sometimes complex systems for medical and social support. This led the church to create a comprehensive resource guide for a wide range of issues people may be facing.

People helping people

At each site, the community carried out many activities and initiatives to improve its capacity to care for its members. Among the most successful were those where the community created a peer-led initiative.

McGrath describes low-key networks, like a widowed parishioner who met with fellow widowers for coffee. It was a not a formal “support group,” but it created bonds in the community. At Christ Church, Hubbard says that the HELP team arranged workshops offered by professionals on advance care planning and grief and loss, but facilitators at the church have now been trained to offer these to their own community.

Participants agree that there is a place for professionally led events and training, but building that capacity within the community is key.

Basing care on trust

Fourth, Van Vliet says the research shows that networks of care need to be based on trust. She gives the example of one church team that formed a partnership with a resource centre in the community. Members of the parish could call the resource centre, but they didn’t. They had concerns about who would be aware of their health and social issues. The solution was to have a volunteer from the church go with the parishioner to the resource centre, so that a trusted person was present.

As Barrett points out, social networks are often lacking as our society becomes more urban and secular. “Recreating the village is a necessary outcome,” he feels, “but a village that’s appropriate for a multicultural urban society in the 21st century.”

By the numbers

During the three-year project, there were 40 events and activities across the four sites, ranging from workshops to arts activities and tips printed in church bulletins. The research team was also busy, making 27 presentations across Canada and internationally about the project. They have had two academic publications about the project and are working on six more. There are also infographics and videos. Nine “toolkits” are designed to help other communities create programs for end of life. A magazine-format publication on the project for the public will be available soon.

For more about the many resources generated through the project, see Healthy End of Life Project (HELP) Ottawa.

Keep on HELPing

The HELP Ottawa project is meant to be just the beginning, says Barrett. From the four pilot sites, the HELP concept can be adopted in other local community organizations — in Ottawa and across Canada — and adapted to their specific needs.

Barrett says the next direction is not yet clear. “Do you go deep or do you broaden? The answer is probably ‘both.’ We can replicate the project at other sites. And there are interesting models that would involve going further, looking at the relationship between the health care system and communities.”

The project research team are planning community forums at each of the pilot sites, and a “summit” meeting in 2024, thanks to a grant from the Social Sciences and Humanities Research Council. Van Vliet says one of the project’s goals is to keep HELP going where it has taken root. “How does it continue after the research portion has officially ended?”

Part of the answer is what is often called “knowledge mobilization” — disseminating the learning from the project beyond the project sites and organizations, fostering action.

At Christ Church, Hubbard says the project has worked to “raise awareness and break down barriers in talking about harder stuff.” Now, at children’s program, community members consider whether children have suffered significant loss. At a pancake supper, members consider whether anyone coming might need people to check in with them. She says this type of caring “is something that we’ve always done, but it has put a spotlight on it.” And it’s not an issue separate from other things the church does. “It’s all of our work.”

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