Hope and Strength
Surround Even the Dying
Theresa Lynn, PhD, RN, LMSW, CT
Wings of Hope Hospice
Western Michigan University
1
Credentials
•
•
•
•
PhD – Interdisciplinary Health Sciences, WMU
LMSW – GVSU
RN, BSN – GVSU
CT – Certified Thanatologist, Association for
Death Education and Counseling
• Executive Director, Wings of Hope Hospice
• Director, Wings Home
• Instructor, WMU – online ‘Understanding Grief &
Loss’
2
Dissertation
Choices Related to
Maximizing Quality of Life
at End of Life
3
Dissertation Chapter
• 5 triads (hospice patient, family member,
provider) were interviewed about
experience of hospice referral
• Strong themes of hope, strength and fear
emerged
• Fears, Hopes and Sources of Strength
Expressed by Hospice Patients, Caregivers
and Providers and How They Inform Care
4
2 Research Questions
• What are the fears, hopes, and sources
of strength expressed by hospice
patients, their caregivers and their
referring health care providers?
• What can these responses inform our
understanding of and the care provided
to patients and their caregivers?
5
Why Important?
• Resilience: the Bright Side of
Aging?
• US, 2014
–84% of all patients in hospice care
were 65+ years old
–41% were 85+ years old1
• Alive until the moment of death
6
Objectives
• Differentiate between the hopes,
strengths and fears of hospice
patients, their caregivers and their
providers.
• Define different kinds of hope and
how hope changes related to end of
life.
7
Objectives (cont.)
• Assess the value of knowledge about
hope, strength and fear and how it
might inform the way providers care
for individuals with life-limiting illness
and their caregivers.
• Describe the importance of
relationships related to end of life.
8
Avoidance
• Many providers avoid talking with
individuals/families about life expectancy
–Inaccurate prognostication2-8
–Discomfort discussing death9
–Believe patient unwilling to
acknowledge death10,11
–Continue curative treatment12
9
Avoidance (cont.)
–Lack of knowledge about hospice13
–Avoid perception of giving up hope14
–Fear of losing control of managing
illness13,15
–Ignorance of culture & perception of
hospice16
–Perception of financial reasons15
10
Time
• Providers may perceive no time
to have discussions about EOL
• Clinician is efficient at expense of
patient-centered care17
11
Myth
Becoming a hospice patient
causes one to lose hope
12
Context
• Triad 1 – Rachel, Liza, Dr. N.
• Triad 2 – Paul, Lindy, NP E.
• Triad 3 – Ken, Nina, Dr. S.
• Triad 4 – Victor, Anya, Dr. G.
• Triad 5 – Mark, Jenny, Dr. T.
13
Triad 1
• Rachel – patient, age 96
• Liza – daughter, lives in summer
home 30 minutes south
• Dr. N – oncologist
14
Triad 2
• Paul – patient, early 40s, strokes,
guarded about AIDS diagnosis,
rejected by family
• Lindy – girlfriend, home in small
west Michigan town
• NP E – friendly, part of hospital
system
15
Triad 3
• Ken – patient, age 89
• Nina – wife, family-oriented
• Dr. S – pulmonologist
16
Triad 4
• Victor – patient, 70s, retired
pastor, cancer with metastases
• Anya – wife, champion
• Dr. G. – oncologist
17
Triad 5
• Mark – patient, 70+, COPD, CHF
• Jenny – sister, caregiver
• Dr. T. – general practitioner
18
Objective 1
Differentiate between the hopes,
strengths and fears of hospice
patients, their caregivers and their
providers.
19
Fear - Definition
“To be afraid of” or
“to worry about” 18
20
Patients’ Fears
• Rachel – heart attack
• Paul – “Not knowing if I’ll get up the next
day”
• Ken – “I just hope that when it’s time to
go that I don’t suffer too bad”
• Victor – “her being without me”
• Mark – not completing house projects,
stated no longer afraid of dying
21
Caregivers’ Fears
• Not afraid – “promoted to glory”
• “I don’t want to see him suffer
when it’s his time.”
• “How lonely I’m gonna be”
• “I’m so afraid of him not being
here”
• “He helps me fix stuff.”
22
Providers’ Concerns
• “I want him to be able to live at
home with his family and his loved
ones around him and maintain as
good a quality as long as he can.”
• Patient not being realistic about
abilities
• “With hospice on board I feel the
concerns are minimal.”
23
Fears/Concerns of Study Participants
Physical
Rachel – heart attack
Paul – wheelchair bound rest
of life
Emotional
Paul – day to
day
uncertainty
Nina – see
patient suffer
Social
Mark - unfinished
projects
Nina – loneliness
Ken – suffering
Jenny – managing
home with patient
Liza – patient might fall,
break hip
Nina – patient will suffer
Victor – wife being
without him
Anya – of patient not
being here
Dr. S – presence of
loved ones for patient
Dr. S – peaceful death
Dr. T – minimal concern
Dr. G – patient not realistic
Dr. S – quality of life
Spiritual
Victor – no one will
see or use papers he
wrote
Mark – dying (prior to
minister’s support)
Liza – not afraid,
patient ‘promoted to
glory’
before death
after death
24
Strength
“the ability to resist being
19
moved or broken by a force”
25
Strength
• “I believe the Lord’s watching
over me.”
• My family is…supportive.”
• “Lord, help me be a healing
influence for this person.”
• “I know how to do this work.”
26
Sources of Strength
Physical
Mark –
working
Intellectual
Dr. G - I know
how to do this
[work]
patient
caregiver
provider
Spiritual
Social
Paul - Lindy’s
family
Rachel – the Lord
Lindy - family
Liza - God
Victor – great
marriage
Anya - Victor
Dr. N - family
Ken – the Almighty
Dr. T – faith in
people
Anya – God Almighty
Nina – faith in God
Victor – our faith.
Jenny - God
NP E - God
Dr. S – Christian faith
Dr. T – Christian faith
27
Objective 2
Define different kinds of hope
and how hope changes related
to end of life.
28
Hope
“to want something to happen
or be true and think that it
could happen or be true” 20
29
Patients’ Hopes
•
•
•
•
•
•
•
“To go to heaven”
“Do what I can from the wheelchair”
That wife will do well
“Man enough to take the pain”
Magic bullet (cure)
“A longer life”
“To get things done”
30
Caregivers’ Hopes
•
•
•
•
“Passing to be peaceful”
No suffering
“For the magic bullet” (cure)
“Keep him as active as he wants
to be”
31
Providers’ Hopes
• Patient wishes respected
• Symptoms managed
• Family receive support
32
Hope as Trust or Reliance21
Rachel (P) – go to heaven, go home
Ken (P) – that wife can exist after I’m gone
Victor (P) – peaceful transition, strength for wife and kids
Liza (C) – patient’s passing to be peaceful (D), for patient to be happy
Nina (C) – patient doesn’t suffer
Dr. N (Pr) – patient’s wishes are respected, family receives support
Dr. S (Pr) – patient will be at home with family & loved ones
Dr. T (Pr) – patient has sense of peace with remainder of life
Before death
P - patient
Death
C – caregiver
After death
Pr - provider
33
Hope as Expectation of Fulfillment21
Rational
Paul (P) – do what I can from
wheelchair
Ken (P) – not in a lot of pain,
man enough to take it
Jenny (C) – keep patient
comfortable
Dr. N (Pr) – patient’s symptoms
well-managed
Dr. G (Pr) – patient’s pain wellcontrolled until end
Liza (C) – patient comfortable
Irrational
Victor (P) – ‘magic bullet’ [cure for his
cancer]
Anya (C) – ‘magic bullet’
Mark (P) – longer life (get things done so
caregiver doesn’t have to worry)
Jenny (C) – patient as active as he desires
before death
P - patient
death
C - caregiver
after death
Pr - provider
34
Objective 3
Assess the value of knowledge
about hope, strength and fear and
how it might inform the way
providers care for individuals with
life-limiting illness and their
caregivers.
35
Providers & Fears
–Understand to alleviate
–Providers – difficult to
anticipate post-death fears
•Recommend services of other
disciplines
36
Providers & Strengths
• Social or spiritual
–Relationships with
22
others/God
• Utilize relationships in care of
others
37
Providers & Hope
• Support hopes for peaceful
death by discussing care
• Irrational hopes not likely to
change
• Link with resources for postdeath period
38
Much Information to be Gained
•
•
•
•
What are your fears?
Where does your strength come from?
What are your hopes?
Answers can
–Guide treatment
–Understand and alleviate concerns
–Link with necessary resources
39
Objective 4
Describe the importance of
relationships related to end of
life.
40
Importance of Relationships
• Relationships important to most patients,
caregivers and providers
• Don’t underestimate patient-caregiver
relationship
• Providers – intentionally foster trusting
relationships
– Establish foundation for discussions about end
of life
– Trust can make conversations more efficient –
may seem paradoxical
41
Humanity as Connector
• Patients, caregivers and providers have unique
perspectives but have humanity in common
• Recognition of humanity may nurture end of life
discussions
• Still alive – last opportunity to help someone
maximize resilience
• Continued resilience living with loss
– Results in living more fully
42
Thank you
43
References
44
1National
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46
9Wyatt,
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47
13Weggel,
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48
•
17McCrae,
N. (2013). Person-centred care:
rhetoric and reality in a public healthcare system.
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• 18Merriam-Webster. (2014a). Retrieved from
http://www.merriamwebster.com/dictionary/fear
• 19Merriam-Webster. (2014c). Retrieved from
http://merriam-webster.com/dictionary/strength
• 20Merriam-Webster. (2014b). Retrieved from
http://www.merriamwebstercom/dictinoary/hope
49
•
21Tulsky,
J. A. (2002). Hope and hubris.
Journal of Palliative Medicine, 5(3), 339-341.
• 22Smits, H. L., Furletti, M., & Vladeck, B. C.
(n.d.). Palliative care: An opportunity for
Medicare. Institute for Medicare Practice,
Mount Sinai School of Medicine. Retrieved
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Discussion
Comments
&
Questions
51