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
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The Reflection Room: Shifting from death-avoiding to death-discussing
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. 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. 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. 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. 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. 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. 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. 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. 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. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
New approaches to support
discussion and planning
Death
denying
Death
accepting
Death
discussing
11. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
New approaches to support
discussion and planning
Death
denying
Death
accepting
Death
discussing
12. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Human beings are storytellers
(Sanders & Stappers, 2012)
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. 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. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Spirituality Research + Participatory Art
(beforeidie.com, Candy Chang)
+
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. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Canadian Hospice Palliative Care Conference
18. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
The invitation to share a story
19. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
The Reflection Wall
21. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Expanding the project
Planning points of intervention
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. 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. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Online @ thereflectionroom.ca
25. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
200shared stories
1,100visitors to the website
26. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
What have we learned so far?
27. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Relationships are at the
centre of the stories
28. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
My reflection
29. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Experiences remain
in our hearts
Human experiences and
“moments in time”
30. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
My reflection
31. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Expressions of gratitude & regret
Promises to do better
Sharing learnings
32. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
My reflection
33. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Death is about life
34. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
My reflection
35. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Appreciation for the
invitation to reflect
36. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
My reflection
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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
The Reflection Room is supported by
Saint Elizabeth Health Care
saintelizabeth.com