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The Reflection Room: Shifting from death-avoiding to death-discussing

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Karen Oikonen, Paul Holyoke, Katherine Rizzi, Barry Stephenson, & Pam Sethi: The Reflection Room: Shifting from death-avoiding to death-discussing.

Thinking about dying and death is something we tend not to do, and those who promote Advance Care. Planning for the 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 possibility. 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

Published in: Design
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The Reflection Room: Shifting from death-avoiding to death-discussing

  1. 1. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Karen Oikonen Designer Researcher @KarenOikonen Early obeservations from a year-long research project Paul Holyoke Director, Saint Elizabeth Research Centre @SEHCResearch The Reflection Room Shifting from death-avoiding to death-discussing
  2. 2. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 There’s nothing more we can do… What are our options? It’s very difficult to make end of life decisions in a time of crisis
  3. 3. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Only 25% of Canadians over age 30 have completed plans for end of life (Environics Research Group, 2013)
  4. 4. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 70% of people die in hospital when over 50% want to die at home (Gauvin, Abelson & Lavis, 2013; Environics Research Group, 2013)
  5. 5. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Choice at end of life depends on our ability to talk about death and dying Canadians don’t talk about death and dying
  6. 6. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Fear and denial are very real aspects of how Canadians relate to dying and death (Arnup, 2013) Death denying Death accepting Death discussing
  7. 7. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 “Medicalization of death” Created an institutional preference to be sick and curable rather than dying and incurable Limited exposure to death and the dying process H (Arnup, 2013)
  8. 8. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Both work Son has a new & demanding job Son with spouse Son Daughter + Spouse + Daughter with spouse & child (2 years old) In the same province (2 hr flight or 16 hrs by car) In a different province (1.5 hr flight or 9 hrs by car) In the same city 3 hour drive in the country Same country, 4 hour flight Same country, 4 hour flight 20 minutes away 1.5 hour drive 2 hour drive An hour away, child has ADHD 3 hour drive In the same city Spouse’s family live in the same city Overseas & travels internationally for work Live in a different country (4.5 hr flight or 34 hour by car) + Daughter with spouse & child (8 years old) + Childcare Both parents work Both work Travels a lot for work Spouse has a new job with little flexibility Son with spouse & 1 child + Childcare Both parents work One parent runs their own business Mother (had a stroke last year) & Father Son with spouse & 2 children (1 & 5 years old) + + Patient & Local Caregiver Childcare Both parents work Spouse also has an ill parent in a different city Son with spouse & 2 children (10 & 14 years old) + Daycare Spouse works from home Both parents work Son with spouse & 3 children (3, 7 & 9 years old) +Childcare Both parents work Spouse is also persuing an advanced degree New spouses Daughter Grad student Mother/Patient (divorced) Father + spouse (divorced & remarried) Family structures are changing
  9. 9. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Research suggests that people who are exposed to dying are more open to discussing it. (Goodridge, Quinlan, Venne, Hunter & Surtees, 2013) (Carr & Khodyakov, 2007) Death denying Death accepting Death discussing
  10. 10. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 New approaches to support discussion and planning Death denying Death accepting Death discussing
  11. 11. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 New approaches to support discussion and planning Death denying Death accepting Death discussing
  12. 12. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Human beings are storytellers (Sanders & Stappers, 2012)
  13. 13. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Schenker Y, Dew MA, Reynolds CF, Arnold RM, Tiver GA, Barnato AE: Development of a post–intensive care unit storytelling intervention for sur- rogates involved in decisions to limit life-sustaining treatment. Palliative and Supportive Care 2015, 13(03):451-463 Storytelling effects Storytelling Emotional disclosure Cognitive processing Improved mental health outcomes (depression, anxiety, PTSD, persistent complex bereavement disorder) Social connections
  14. 14. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 It is more likely that people will discuss dying and death if they are exposed to the reality of death and dying through experience. Hearing or reading true stories about serious medical conditions can increase the familiarity that appears to be a significant catalyst to discussions about end of life. (Mazanderani, Locock & Powell, 2013) (Ziebland & Wyke, 2012) Stories can be a catalyst to discussion about end of life.
  15. 15. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Spirituality Research + Participatory Art (beforeidie.com, Candy Chang) +
  16. 16. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 How might we use human-centred design and qualitative research to go from being a death-denying society to a death-discussing society?
  17. 17. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Canadian Hospice Palliative Care Conference
  18. 18. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 The invitation to share a story
  19. 19. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 The Reflection Wall
  20. 20. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
  21. 21. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Expanding the project Planning points of intervention
  22. 22. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Within Healthcare Hospice Palliative Care Ontario Conference St. Paul’s Hospital, Sasaktoon Heart House Hospice, Mississauga
  23. 23. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Public Spaces Death Perceptions Exhibit, Wellington County Museum Tansley Village Retirement Home, Burlington Art Gallery of Burlington
  24. 24. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Online @ thereflectionroom.ca
  25. 25. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 200shared stories 1,100visitors to the website
  26. 26. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 What have we learned so far?
  27. 27. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Relationships are at the centre of the stories
  28. 28. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 My reflection
  29. 29. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Experiences remain in our hearts Human experiences and “moments in time”
  30. 30. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 My reflection
  31. 31. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Expressions of gratitude & regret Promises to do better Sharing learnings
  32. 32. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 My reflection
  33. 33. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Death is about life
  34. 34. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 My reflection
  35. 35. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Appreciation for the invitation to reflect
  36. 36. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 My reflection
  37. 37. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 People have complex lives Embedded in complex social networks Healthcare professionals work within a complex system
  38. 38. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Society that is struggling with how, when and with whom we talk about dying and death Where are the leverage points?
  39. 39. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Read some of the reflections in the Reflection Room90% I found reading the other pages on the wall put me more at ease about some of my own reflections that I have in my head. It allowed me to see that most of my reflections were not way out there. Death denying Death accepting Death discussing
  40. 40. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Said the experience made them a bit, or a lot, more comfortable thinking about dying and death Said the experience made them a bit, or a lot, more likely to talk to family and/or friends about dying and death 74% 78% Death denying Death accepting Death discussing
  41. 41. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Of people that did not read reflections or did not write a reflection, ‘not enough time, maybe later’ was indicated as the primary reason. Death denying Death accepting Death discussing
  42. 42. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Physical space can open emotional space. Time = ‘space’ People often visited more than once. Death denying Death accepting Death discussing
  43. 43. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 There are times and places where the leap is too great. It’s easy to not accept the invitation. Death denying Death accepting Death discussing
  44. 44. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Two leverage points are emerging The creation of ‘space’ The sharing of the human experience Death denying Death accepting Death discussing
  45. 45. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Further look at ‘time’ and ‘space’ What do we need to know about creating space within our complex lives that acknowledges the complexity, and commonality, of individual experiences?
  46. 46. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Our next steps 20 installations between now and June 2017 Death denying Death accepting Death discussing
  47. 47. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 Better chance of dying where we want, how we want and with whom we want There’s nothing more we can do… Let’s talk about what we want… What are our options? Health crisisBefore diagonsis
  48. 48. We invite you to take a moment to reflect on your own experiences with dying and death. Paul Holyoke PaulHolyoke@saintelizabeth.com @SEHCResearch Karen Oikonen KarenOikonen@saintelizabeth.com @KarenOikonen thereflectionroom.ca Thank you.
  49. 49. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016 The Reflection Room is supported by Saint Elizabeth Health Care saintelizabeth.com

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