A new survey will help find and fill gaps in communities’ ability to help those at end of life and their caregivers

To improve the experience of death and dying in Canada — both for those at the end of their lives and for their caregivers, friends and family — we need to build knowledge and support services in their communities. But where should we devote time and money to best help people?

Answering this question is the purpose of the Death Literacy Index (DLI), a survey to understand many aspects of people’s skills, knowledge and awareness around death and dying (“death literacy”). The survey was designed in Australia and first released in 2020, as part of the “compassionate communities” approach to foster communities’ ability to provide palliative and end-of-life care.

The survey has been adapted for use in the UK, Ireland, Sweden, China and Turkey to date.

Now, it’s being adapted to the Canadian context, thanks to funding from the Mach-Gaensslen Foundation of Canada.

“It’s a significant tool in helping an individual or community identify their gaps in what they know about death and dying,” says Dr. Nick Busing, who is on the board of Compassionate Ottawa, the project’s sponsor, and an emeritus professor of family medicine at the University of Ottawa. The survey shows whether respondents know about resources in their community or have experience at the bedside of someone dying, among many other aspects. “Institutions like hospitals could use a tool like this to understand where their employees are in relation to death and dying,” he mentions as an example.

“At the moment, we don’t have anything as a measure of death literacy in Canada,” explains Christine McPherson, a psychologist, nurse and associate professor at the University of Ottawa, who is leading the research.

As a result, she says, there’s a gap when organizations try to find ways to improve people’s knowledge and skills. Information to fill this gap can help guide policy, allocate funding and determine whether efforts to improve death literacy are effective.

“For example, do we put more money into advance directives?” she asks. “The survey will show where the gaps are — what people know, what they don’t, and what support they still need. For example, do we know how to plan for serious illness, to make sure our wishes are known? Do we know what funeral directors do? Do we know what palliative care is and how to access it?”

“This work fits well with one of the three key areas of focus of the MGF — mental health,” commented Dr. Ian Arnold, a director of the Mach-Gaensslen Foundation of Canada. “Increasing our society’s ability to understand the key factors that affect how we deal with and react to the end of life is essential to managing this often-difficult life transition. This will make this transition easier for the individual dying, their family, and their friends and communities.”

Project progress

Adapting a survey is a complex process. McPherson says many steps are needed to ensure that the survey “actually does what it’s supposed to do.” On the one hand, Canada has similarities to countries like Australia, Ireland and the UK, where the survey is being used, such as our publicly funded universal health care system. But we have differences as well, such as medical assistance in dying and different provincial policies affecting palliative and end-of-life care. Canada’s communities are often very diverse, encompassing cultures with varying attitudes and approaches to death and dying.

These observations come from a pilot study on whether the DLI would be clinically useful in Canada. The team asked Canadians familiar with a public health approach to end-of-life care about the DLI. Respondents said the survey had potential if it were modified to the Canadian context.

To modify the survey, first, an advisory group was formed to interpret the findings from the pilot study and two subsequent consultations and apply these to a new Canadian version of the DLI. Several members of Compassionate Ottawa are serving on this group.

The next phase involves interviews with Canadians from diverse backgrounds, asking them to look at and comment on the original DLI survey. This phase is designed to determine the relevance of the survey’s content and its sensitivity to cultures that may have different values, beliefs and practices concerning death and dying. As of October 2025, recruitment of participants for these interviews has started.

A partner in these phases is the Canadian Hub for Applied and Social Research, a support and consulting service at the University of Saskatchewan. The hub recruits participants and collects and analyzes data.

With the information from the interviews about the survey’s relevance and sensitivity in hand, the advisory group will start to modify the survey for Canada. The first draft of a modified survey will be tested with a sample of Canadians to ensure the questions, response options and instructions are clear to users. Based on this testing, the survey will be further modified.

Once that phase is completed, the survey will be rigorously tested in a larger sample of Canadians and the responses analyzed.

In adapting a survey like the DLI, “you want the tool to measure what it’s supposed to be measuring and to ensure it’s accurate in measuring that,” often referred to as “validity,” McPherson says. It’s also important that a survey is reliable in measuring across different people and groups — that is, it measures people’s skills, knowledge and awareness in a consistent way.

Survey open for use across Canada

The researchers plan to release the finalized survey freely on the website of the University of Ottawa, so that anyone in Canada can use it. The team will also present the survey to academic audiences and grassroots organizations. “We want to get it out there so people can use it,” says McPherson.

The ultimate goal, says McPherson, is “trying to make sure people have knowledge, skills, awareness before something happens and it becomes a crisis.”

“Too often we avoid talking about death, dying and bereavement until it happens to us.”

Compassionate Ottawa will start using the survey when it’s ready, say McPherson and Busing.

“An organization like Compassionate Ottawa could use the survey results to target some of our interventions or workshops,” says Busing.

Even community organizations may not fully understand the community’s needs, says Busing. “We may have blinkers on. We don’t have the entire picture. So that’s what we need to fill in.”

He believes the survey will help groups like Compassionate Ottawa to do that. He foresees “ongoing, continuous needs assessment for the community related to these critical issues around death and dying,” for the benefit of caregivers and the entire community.

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