Connection, communication and temporality in conversations on death and dying

INVESTIGATING CONNECTION, COMMUNICATION AND TEMPORALITY IN CONVERSATIONS ON DEATH AND DYING USING A DESIGN RESEARCH APPROACH

The objective of this project is to develop improved understanding of communication at end of life in order to enhance public dialogue on end-of-life issues and provide insights on use of communication technology in end-of-life service provision. Specifically, this project aims to:

  1. Develop and adapt art and design techniques for engaging in research on the topic of death and dying
  2. To understand how communication technologies are used during decline and death, especially for families at a distance
  3. To develop an example artifact, based on the outcomes of the research, to be used in stimulating dialogue on new ways of understanding connection and the temporal aspects of death and dying

This project explores themes of technology use, connection, communication, and temporality in the dying process. As seniors make up Canada's fastest growing age group, Canadians will increasingly need to confront the experience of "end of life". While death and dying includes conversations on the concerns of healthcare providers about medical care, a more comprehensive conversation about end-of-life encompasses discussions on a broader range of topics, including family dynamics, interpersonal relationships, life experiences, spiritual values and personal beliefs and preferences.

While technology can be a connector for family at a distance, its role when the pace of decline changes is not well understood. This is an especially relevant concern in a time that increasingly sees adult children living at a distance from their parents. When family members are not physically present their understanding of a relative's decline in health is reduced, impacting their ability to respond appropriately, plan, and equally distribute tasks related to the care of their dying loved one. 

This project brings together families, support groups, caregivers, and healthcare providers to better understand the use of communication technology in connecting families at end-of-life. Clients, family/friends, and providers at the Toronto Central Service Delivery Centre of Saint Elizabeth Health Care were invited to participate in interviews and co-design workshops to identify key concepts and themes regarding communication around decline and death. Data from this research will be integral to creating a "Death, Dying and Design" toolkit, intended for design practitioners to use as guidance when engaging in design research on the difficult topic of end-of-life.

Research creation artifacts generated through this project will enrich public discourse and open up dialogue on end-of-life choices. Facilitating dialogue on these choices, such as the decision to die at home, in hospice, or to forego intensification of care, has the potential to significantly impact policy on the provision of hospice or end-of-life care in the home.

For more information, please visit http://deathdyinganddesign.com and The Reflection Room.

 

This research was supported by the Social Sciences and Humanities Research Council of Canada.

 

SSHRC Logo

 

Creator: 
Photograph of a student writing on a whiteboard. Text on the wall describes potential patient reactions to a negative diagnosis
Friday, April 13, 2018 - 10:00am
Lab Member: 
Kate Sellen

How do we get Canadians talking about death and dying?

Image of Karen Oikonen sitting at desk.
Monday, June 8, 2015 - 4:00am

Only 30 per cent of Canadians have advanced care plans for themselves.  These plans help doctors and families know what patients want when it comes to end-of-life palliative care.

OCAD University student Karen Oikonen has tackled this problem as part of her Strategic Foresight and Innovation major research project.  Oikonen focused on the issue of making it easier for families who live far apart to communicate and get better info about their sick loved ones.

She experienced the problems with the system first-hand when she lost her dad to cancer.  Oikonen flew to Thunder Bay almost every other weekend, leaving her two-year old son at home and often arriving back in Toronto at 6 a.m. and going right to work.

“As we move away from where we’re born we still want to be connected to our parents and their well-being,” says Oikonen. There are some big problems with the current system. Medical practitioners are only allowed to give details and updates to the patient’s power of attorney over the phone – so if you’re living across the country and aren’t your parent’s POA, you’ll have to rely on someone else for info or get on a plane.

“When my dad died it changed everything,” says Oikonen. “The world didn’t look the same for me anymore.”  She was mid-career and looking for a masters degree.  When Oikonen heard about the Strategic Foresight and Innovation program, “I knew, this was it,” she says. 

You can learn more about Oikonen’s project and the exciting work of other innovative Strategic Foresight and Innovation students at their graduate exhibition, xFutures, on now until June 17th at 49 McCaul Street, Toronto.