New program to offer support to people at the end of their lives

Initiative to help family caregivers, work in parallel with the health system

Although she cared for her sick husband for three years, Claudia Chowaniec admits she was in a “state of denial” that his death was imminent until the last few weeks of his life.

When he told her he wanted to die at home, she was wary. “I was afraid and exhausted. Time was short. I needed a crash course.”

Determined to grant his wish, she made arrangements for him to come home from the hospital. Once she did, everything changed, she said Wednesday at the launch of a program to better support people in the community who are facing death.

A palliative care doctor came to their home every day to administer pain medication and help answer questions and allay fears. Equally important, friends and neighbours began coming by with food and comfort.

“I wasn’t isolated and on my own as I had been at the hospital for so many months. Our community was there all along.”

Chowaniec, who volunteers with Compassionate Ottawa, was among the speakers at the launch of the Healthy End of Life Project (HELP).

The three-year research project is based on a model developed in Melbourne, Australia. It aims to help communities support people to live well at the end of their lives, surrounded by family, friends and social networks. It also aims to help people talk about death and dying and to ask for and accept help when they need it.

“The biggest change that HELP represents is a move away from a medically driven understanding of palliative and end-of-life care,” said Pamela Grassau, principal investigator of the project, which is a collaboration among Carleton University, Compassionate Ottawa, and the Mach-Gaensslen Foundation of Canada, which will provide $641,000 in funding over three years. Compassionate Ottawa is also providing $40,000 for each of the project’s three years.

Dr. Chris Carruthers, chair of the Mach- Gaensslen Foundation, called the program groundbreaking.

“There are excellent palliative care programs in Ottawa, but they cannot keep up with demands. As a result, some patients who need palliative care are poorly supported. And those without a strong social network may have no one to turn to. This will help people to live well as they approach their end of life.”

Nadine Valk, executive director of the Champlain Hospice Palliative Program, noted that three-quarters of all caregiving in Canada is done by family members, not health professionals.

“Most caregivers feel that they don’t have a choice, that there is little support and it is not easy to find. This project is all about helping us get more comfortable with providing that support to each other, with talking about death and dying, grief and loss, so we can provide the strength of community in supporting each other.”

She said the program is not meant to off-load more of the work of caregiving onto family members but to help them find more support. The program, she said, is meant to work in parallel with the health system, which, she said, needs more resources.

Grassau, of Carleton’s school of social work, said the aim of the three-year project is to create a “collaborative community culture” for end of life.

“What is a compassionate community? Where the needs of the community are prioritized, where people living with frailty and facing the end of life and loss are not ignored or hidden away. I believe this model is possible.”

The project acknowledges that the health system — which is about to be reformed in Ontario — is overburdened and some traditional social networks have broken down, which can leave people isolated or without help at the end of their lives.

Research has found that most people in Ontario want to die at home, but few do.

“When the time comes, most of us want a good death at home with family and friends, but usually that doesn’t happen,” said James Nininger, Compassionate Ottawa co-chair and former chief executive of the Conference Board of Canada.

“There’s also a big economic case for helping people stay at home or at least in the community, with help and support services provided by friends, family and, when it’s required, health-care professionals.”

The HELP model “goes back to what we used to do, with the community coming together to support people,” he said.

The biggest change that HELP represents is a move away from a medically driven understanding of palliative and end-of-life care.