Karen Oikonen, Paul Holyoke, Katherine Rizzi, Barry Stephenson, and Pam Sethi
Thinking about dying and death is something we tend not to do, and those who promote Advance Care Planning for health care in our last days, hours and minutes would like us to do more. However, planning requires us to think about how we want to live our final days and then share those wishes with others. This research proposes the question: How might we use human-centred design and qualitative research to go from being a death-avoiding society to a death-discussing society?
Human beings are storytellers. Understanding complex challenges through narrative builds empathy. Stories also trigger the imagination for future possibilities. We propose that providing places for storytelling—and places for reading the stories of others—might trigger more thinking and break through the social complexity that can be a barrier to discussing dying and death. As part of a year-long research project, we are creating “Reflection Rooms,” both short-term physical spaces across Canada and an online website—where people are invited to write their stories about dying and death and read the stories of others. We will share emerging themes from the research and pose the questions: How might we engage patients and families in shared storytelling as they navigate decision-making at end-of-life? How might collective storytelling about dying and death support the design of human-centred Advance Care Planning experiences?