22nd International Congress on Palliative Care, Montreal, 2018

1. Female Spouses and Their Preparation
For the Death of Their Loved One:
Preliminary Results of a Grounded
Theory Research
Emilie Allard
RN, M.Sc., Ph.D. (c)
Université de Montréal
Christine Genest
Ph.D.
Université de Montréal
Alain Legault
Ph.D.
Université de Montréal

2. 2
I do not currently have an affiliation
(financial or otherwise)
with a commercial entity.
No Potential Conflict of Interest to Declare

3. Plan for the presentation
• Goal of the study
• Methodology
• Process of preparation to the death:
• Dynamics of the process
• Structure of the process
• Conclusion
• References
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4. Goal of the study
Propose a model for the process of preparation to the
loss of a spouse to cancer, from the perspective of
female spouses.
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5. Constructivist grounded theory
methodology
Data collection:
• Open interviews
• Selection criteria:
• Women
• 18 years old +
• Spouse living with
a terminal cancer
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Data analysis:
• Codification and
category development
• Constant comparison
of data
• Memoing and
diagrams
The preliminary results
are based on ten (10)
interviews (Charmaz, 2014; Corbin
& Strauss, 2015)

6. Life prior to cancer Life after death
• Crystalization of the
fundamental loss
Spouse
Prognosis
announcement
Intensification
of symptoms
until end-of-
life
Appearance of symptoms and
decrease in functional
capacity
Diagnosis
announcement
• Letting go
• Confronting the reality of the
spouse’s mortality
• Threat to the spouse’s life,
dampened by the hope of
recovery
• Tactical preparation
• Planning for the
future
• Lifestyle modifactions
• Controlling the end-of-
life
• Living one day at a
time
• Thinking about
ending up alone
• Supporting the
spouse’s decisions
• Considering the
possibility of
therapeutic failure
Death of the
spouse

7. Overall process structure and
dynamic
• Flow of process is based on:
• Life prior to cancer and life after their spouse’s death
• Illness trajectory
• Evolution of the process is based on 4 periods
experienced during the illness and end-of-life:
• Diagnosis announcement
• Prognosis announcement
• Appearance of symptoms and decrease in functional
capacity
• Intensification of symptoms until end-of-life
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8. Overall process structure and
dynamic
Spouses respond to each transition with:
1. Strategies that help them adjust to the changes they
experience in a given period
2. Mental scenarios that help them plan for the next
transition
“Ah! Sometimes it pops in my head. You know, from time to time.
Sometimes it’s when I’m in the shower… I’m starting to juggle, and
hop! I’m in the future” — Kate
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9. 1st period : Diagnosis announcement
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Experience
State of shock, denial,
stress… and hope
« Boom, the diagnosis hits you. Of course our lives were upended,
really, like a three-sixty (360), you know? I would say that last
summer was really about shock, sadness. » - Kate
Meaning
Threat to the spouse’s
life, dampened by the
hope of recovery
« Because the surgeon said: « Mr., there’s no need to worry, we’ll
take it out [the cancer] ». - Ether
Strategies to
adjust
Supporting the spouse’s
decisions
« I said « Of course! I’ll be with you through this ». But you know,
deep down, I kept thinking that if this was happening to me, I’d think
this wasn’t really necessary, it’s almost like trying to extend life at any
cost. But he (spouse) doesn’t see it like that; he sees it like an X
additional period of time. » - Angie
Planned
scenarios
Considering the possibility
of therapeutic failure
« And, you know, it’s tough, because it’s always shocking to learn
that you have cancer because you never know whether… Is it too
late? Has it spread? Will he make it? You know, we never really
know. (…) And I really wasn’t expecting that. » - Amy

10. 2nd period: Prognosis announcement
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Experience
State of shock and loss of
hope
« With all the results, the blood tests and everything else, well
then he says « We’re in palliative » [Shock; short of breath].
He says « Chemo[therapy] is out of the question, you wouldn’t
be able to handle it, otherwise, there aren’t a ton of
alternatives you know. » That, well that gave me a shock. » -
Angie
Meaning
Confronting the reality of the
spouse’s mortality
« Today is different. (…) It’s different because you know
there’s no going back. That, of course, isn’t easy [crying]. » -
Ether
Strategies to
adjust
Living one day at a time
« Day-to-day for sure because otherwise you break down;
day-to-day, yeah, not like you have much of a choice. » -
Branda
Planned
scenarios
Thinking about ending up
alone
« Sometimes, you know, I imagine myself after [the death]. But
that, it’s really too far. Now, I’m like: « Oh God, this is the man
of my life. What am I gonna do without him? » - Kate

11. 3rd period: Appearance of symptoms
and decrease in functional capacity
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Experience
Confrontation with the
changes tied to the illness’
evolution.
Development of the role of
caregiver.
« So now I’m kinda playing the role of a nurse, I don’t have a
choice » (E#10)
« So like I was telling you, what I miss most is my friend. He can’t be
my friend, (spouse) you know, because, how could I say this [crying],
you need a kind of chemistry that we had, and that we don’t have
anymore. And that chemistry, the cancer took it away. » - Branda
Meaning
Crystalization of the
fundamental loss of the
loving spouse, friend and
lover.
« It’s because there’s just me that… that understands what’s
happening. No one can understand, no one experiences it like me. »
- Amy
Strategies to
adjust
Lifestyle modifications
« But when it (diagnostic) happened, it’s one of the things I
developed a lot – I drove the car a lot more, even if he was there, I
was driving. I had to develop that. » - Nikki
Planned
scenarios
Controlling the end of life
«You know… When… If… It could happen that he is too weak that
we have to—for example, get a hospital bed at home— and that we
need to watch over him closely. I will find it hard for sure. (…) but I’ve
got a number to call if something is happening» — Angie

12. 4th period: Intensification of symptoms
until end-of-life
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Experience
Final stages of illness
progression leading to end of
life: hospitalization
« It meant it was his last home. So what it meant for me is that
it’s sure he’s dying, it’s sure it’s here. And it’s close. It’s sure that
it’s soon. » - Nikki
Meaning Letting go
« That’s just how it is, that’s life – maybe that’s what people
need to get into their heads, the process to accept death is the
same process we use our entire life. We spend all of our time re-
adjusting, adapting, and accepting things we don’t agree with.
We end up accepting them anyways and getting through it; it’s
the same thing. » - Nikki
Strategies to
adjust
Tactical preparation:
prearrangements and
souvenirs
« But me… for me, it’s important that… I don’t want him to be
taken away from and… you know… I want to spend time with
him. » - Amy
Planned
scenarios
Return to a vision of self and
planning for the future
«Sometimes I think about what my life will be after … you know
(the death)… For sure I will have to reorganize, but I’m sure I will
be alright. And I will start travelling again…» – Angie

13. Conclusion
• Each event of the illness trajectory is also linked to a
period of the process of preparation to the death
• Professionals working with caregivers should take the
time to try to understand what they are living, what
meaning they attribute to the experience, how they
react to it, and how they view and think about the future
• Resources and information could then be personalized
for the expressed needs of the caregivers
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14. References
Charmaz, K. (2006). Constructing grounded theory. A practical guide through qualitative
analysis. Thousand Oaks (CA): SAGE.
Corbin, J. M., & Strauss, A. (2015). Basics of qualitaive research. Techniques and
procedures for developing grounded theory. (4e éd.). Thousand Oaks (CA): SAGE.
Lindemann, E. (1944). Symptomatology and management of acute grief. American
Journal of Psychiatry, 101, 141-148.
Meleis, A. I., Sawyer, L. M., Im, E. O., Hilfinger Messias, D. K., & Schumacher, K. (2000).
Experiencing transitions: An emerging middle range theory. Advances in Nursing Science,
23 (1), 12-28.
Rando, T. A. (1986). Loss and anticipatory grief. Lexington (MA): Lexington Books.
Rando, T. A. (2000). Clinical dimensions of anticipatory mourning: Theory and practice in
working with the dying, their loved ones, and their caregivers. Champaign (IL): Research
Press.
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