Examining the concept of "a good death" in Canadian society

Meredith LevineResearch, irrespective of discipline, is a creative process, and all research is storytelling, argues Meredith Levine, a lecturer in the Master of Media in Journalism and Communications in FIMS.

“The plot lines and formats may differ between disciplines, but most of us adhere to basic narrative structure of beginning, middle, and end,” says Levine.

“We start with an unanswered question (ideally one we believe is important to try and answer), we then plot a course of investigation (this is the middle); often encountering dead ends or wrong turns. We may have a hunch, or an intuition about how the story ends, but we won’t really know until we get to the end of our research project.”

A Good Death – a project borne out of a health journalism course Levine taught in 2011 - began with the following questions: What constitutes a good death? Who in Canada has access to a good death? What factors determine this?

To answer these questions, students in the course reviewed academic literature, then interviewed a range of experts from palliative patients and their families to front-line palliative health care providers, palliative care researchers, and health policy experts and health economy researchers.

“In terms of methodology, this is consistent with the way research is conducted in many disciplines,” says Levine. “Our final texts were stories written for a general audience rather than an academic or policy audience.”

The students’ work was published on CBC.ca, picking up a Canadian Hospice Palliative Care Association 2011 Media Award and an Ontario Newspaper Award in 2012 for Student Journalist of the Year. The project was also a finalist for a Canadian Association of Journalists award.

Levine, who says her health research is usually targeted at general audiences, worked for more than a decade as a producer at CBC National Radio Current Affairs, where she created in-depth programming on issues ranging from child welfare, homelessness, poverty, reproductive rights, various Supreme Court decisions, and health care policy, delivery, and practice.

Levine collaborated with the CBC in 2014 on a multimedia project on chronic vertigo. Her project became one of the CBC’s top health stories that year and was reposted around the world. “If you bring enough passion to even the most obscure issue - and chronic vertigo isn’t exactly top of mind for most Canadians – you can attract and engage a large audience.”

Levine received a Canadian Institutes of Health Research Journalism Award to support her project on chronic vertigo. CIHR later cancelled the award. The Canadian Medical Association Journal reported in December 2013 that CHIR was shifting its focus to less formal methods of sharing with Canadians, included social media and public meet-and-greets with scientists.

“The cancellation of the CIHR Journalism Award is a big blow to long-form journalism in Canada,” says Levine. “Many really important works on the environment, on violence, in fact on a whole range of economic, social and political issues that could broadly be deemed health-related were funded by this award. It should be reinstated.”

Another of Levine’s research areas is the state of journalism in North America in the wake of the interconnected impacts of technical disruption, consolidation of ownership, and wholesale downsizing of newsrooms.

Her recent research into this has been guided by the following questions: What is the relationship between ownership and content in news media? What is the impact of “paid” content (i.e. content whose primary purpose is to serve private interests, and not the public interest) on journalism? And what does entrepreneurial journalism really mean?

A co-chair of the Canadian Association of Journalists’ Ethics Advisory Committee, Levine co-wrote a discussion paper published in September 2015 on sponsored content.

The paper observed that the key difference between sponsored content and other forms of advertising content is the degree to which it aims to be indistinguishable from editorial content, which spurs two key ethical issues: deception and conflict of interest. The committee encourages newsrooms to acknowledge these issues and address them appropriately.

“One of the largest areas of sponsored content is in the area of health coverage,” says Levine. “It is extremely problematic when the reporting is being funded by the marketing arms of Big Pharma, and even more problematic when this financial relationship is not disclosed to the audience, something that happens with great frequency.”

Levine’s current health research is documenting the life of Kim Blain, a women in her mid-fifties who was diagnosed with Early Onset Alzheimer’s Disease. With this project, Levine is attempting to answer the following question: How does someone living with early onset Alzheimer’s experience and make sense of the progression? Alzheimer’s usually affects cognition before motor function; in Kim’s case, the disease impaired her motor functions first.

“It is very unusual for someone with advanced Alzheimer’s to retain the capacity to sense-make and communicate their experience, but Kim has amazing insights and a powerful way of expressing them,” says Levine. “Given the rapidly increasing population of Canadians living with dementia, accessing this information and knowledge is of vital importance.”

Levine plans to meet up with Kim again in the spring or early summer in 2016 and then assemble a couple of stories. “The agreement I have with Kim and her husband is to keep filming through to the point when Kim has lost her cognitive abilities,” Levine says.

“I admit that the prospect of bearing witness to the next phase of Kim’s journey is somewhat daunting, but I feel obligated to try and capture it. Both Kim and her husband are deeply committed to sharing their story for public education.”

Levine says, “I’m not sure where I’ll end up publishing this work but I’m confident a good home will be found.”