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Negotiating
Uncertainty
Hope, Truth-telling, & Ethics in
Professional Caring
Catherine Simpson, PhD(c), IDPHD Program
Dalhousie University, Halifax, NS, Canada
Overview
I. Introduction
Starting with stories…
II. Theory
Themes: hope, bioethics, truth-telling, an “ethic of care”
III. Application
Expanding the relevance - hope & chronic illness
IV. Integration
Exploring our own experiences - small group discussion
Learning from each other - group experience & reflections
V. Conclusion
Summary
Food for thought…
6/24/2012 2
Goals & Objectives
A richer understanding of, and appreciation for, the
nature & role of hope as an ethical focus for teams
committed to providing truly patient-centred care.
With this goal in mind we will:
Begin with a definition of hope relevant to HC
Examine theory related to hope & ethics in HC
Apply this theory in different case contexts
Begin to integrate it through small group discussion of personally
relevant cases/experiences
Share emerging insights in the larger group
6/24/2012 3
I: Introduction
3 cases referred to CEC:
Case 1 - PC context, pt is a 53 yo mother of 2,
divorced, Dx 2 yrs, end stage sarcoma
• DNR, but wants everything else done: blood, Ab’s
Case 2 - Rehab context, 24 yo male, Hx of
traumatic spinal cord injury (mos), parapleg.
• D/C plan in place - pt refusing to leave hospital
Case 3 - Rehab context, 48 yo mother of 1,
post-Sx spinal cord compl’s - quadraplegia
• pt refusing: a) to eat or drink
6/24/2012 4
What is at issue… for whom?
Case 1: Pt: I want everything done…
• Subtext: My hope is to live another hour, day, week,…
• HCPs: Convincing her to change her goals of care…
• Subtext: we want her to have a peaceful death…
Case 2: Pt: I am not ready to go home…
• Subtext: Unless I get better I can never go home…
• HCPs: Getting him to accept reality that this is as good as it gets…
• subtext: we want to get rid of these “false” hopes so he will go home…
Case 3: Pt: I am not going to eat or drink…
• Subtext: Unless something changes I have nothing to live for…
• HCPs: We think she should not be allowed to do this…
• Subtext: we don’t want her to die…
Real issues for all: uncertainty & hope(s)…
6/24/2012 5
Perspectives…
1. For the team members?
o difficulty negotiating a care plan they can feel good about
o seeing pt’s hope(s) as the main problem
o uncertainty - how to change pt’s hope & on what basis
2. Another way to label this…?
o ethical dilemma - for HCP team; values, prof’l practice,
3. Why is it important to find a way to address
these concerns?
o motivation, communication, behaviour
o therapeutic relationship
o decision-making & care-planning
6/24/2012 6
II: Theory
Issues:
1. hope/“false” hope & “truth-telling”
2. doing the “right” thing - professional ethics; for this
patient v. for all patients
3. care-planning & decision-making - communication
Taking into account that perspectives vary:
By agent: patient& family; HCPs; hospital; society
By context: acute care v. PC v. community-based
variation by service - eg., ICU, geriatrics, etc
variation inter- & intra-community - rural, urban, SES, etc
6/24/2012 7
Hope
pervasive, illusive concept
Definition:
Hope is an emotional attitude related to:
a) desires/wants re: particular outcome(s)
b) personal values/goals
c) actively imagined, realizable possibilities
d) a dynamic of personal agency
(Christy Simpson, 2000, The Intersections of Hope, Health & Illness: moral responsibilities of health care
providers; PhD thesis)
What does this mean in the HC context?
o individualistic
o imaginative potential
o agentic
o relational
6/24/2012 8
Hope (cont’d)
“In the heart of each of us, there is a voice of hope, a small voice that
yearns to say “yes” to life. If nurtured and strengthened, it invites,
encourages, pulls, pushes, cajoles, and seduces us to go forward.
The experience of hope is not tidy. It is not something apart from
love and courage and all the dynamics of the human spirit and
human relationships. It is ever-present in our lives. Whether viewed
as a human need, a biological life force, a mental perspective, or an
external pull to transcend self, hope is capable of changing
individual lives. It enables individuals to envision a future in which
they are willing to participate.”
Jevne (The Voice of Hope: Heard Across the Heart of Life, 1994)
6/24/2012 9
Hope in Situ…
Thinking back to the cases, … and keeping definitional implications in
mind:
a) hope is context & person relative
b) the presence/absence of hope is most acutely felt in times of
uncertainty & change
c) hope can be influenced by significant others (though it has more
resilience than we might think)
What about the hope dynamics in the three cases?
desires/values/goals, identity - emotion: anger, fear, uncertainty
motivation (conscious and unconscious, pt’s & HCPs’) - words &/or
behaviour - communication
integrity of the therapeutic relationship - trust, decision-making
• potential to support or erode pt’s sense of agency
patient’s/family’s experience of care
How to proceed…applying the “ethics” lens to hope…
6/24/2012 10
Ethics
Ethics is basically about the ways we do, & should, treat
each other. Ethics involves a systematic investigation of
our values & actions.
Context - health/care - care interactions re: health
medicine - physiology/“disease”/cure focus dominates
recent more holistic focus - expanded psychosocial-spiritual/
“illness”/care focus, “respect for persons” perspective, more
pt/fam-centred
• “hope” messages - implicit, part of it - obligation to promote
(encourage, nurture) hope in pts
“Hope is the physician of every misery” (Irish Proverb)
• rooted in benevolence, non-maleficence as well
6/24/2012 11
Ethics & Bioethics
Values
beliefs that cannot be demonstrated to be correct or incorrect by reference
to evidence or set of facts and which provide essential guidance for actions
Values Conflicts
Given the nature of values, it is inevitable that they will come into conflict
Ethics
Goal of ethics is good decision-making - our commitment to struggle
with values conflict and values uncertainty in an effort to make good
decisions (how do we understand “good” in this context…?)
6/24/2012 12
Ethics & Bioethics
Decision-making - many different ethics frameworks to
guide deliberations
Decision-making in HC - 4-principle bioethics framework:
• respect for autonomy
value = self-determination, respect; pt’s best interests
• benevolence
value = service; cure & care - goals of medicine
• non-maleficence
value = do no harm
• justice
value = fairness; equity of service
6/24/2012 13
Bioethics & Hope
Respect for autonomy - informed choice
attention to 5 elements:
Capacity
• Disclosure - Dx, Px, Rx options, risks v. benefits, rec’s
Understanding
Voluntariness
Authorization
Hope: a factor in disclosure aka “truth-telling”
• pt’s choice - offering truth (Freedman, 1993)
• what is heard, how it is interpreted
• HCP’s choice - what, when, how, to whom
6/24/2012 14
Disclosure & Hope
“We ridicule those with too much hope and hospitalize those with too little.” (Rona
Jevne)
HCPs tend to see pts’ hope(s) as real or “false” ie., good or
bad
o power differential - “expertise” & certainty
o pressure for “truth-telling” & more info - lessen uncertainty
“The contention that hope is a product of the perception of the individual
indicates that the use of the same set of facts to calculate probabilities will
result in varying degrees of hopefulness or hopelessness among different
persons encountering similar circumstances.” (McGee, 1984)
6/24/2012 15
“False” Hope
4 common assumptions:
“false” hopes exist
“false” hopes can be reliably identified
“false” hopes are, or create, a problem
“false” hopes should be changed, eliminated, or
avoided - role for “truth-telling”
• vulnerability
• “I have spread my dreams under your feet, Tread softly because you tread on my
dreams” (WB Yeats)
• fluctuation
• self-reflection
• alternative terms: contested/uncontested; shared/not shared
6/24/2012 16
Further considerations
What about my hope(s)?
Do we have to share same hope to give good care?
Do we make space for differing hopes?
If I don’t challenge, am I endorsing the pt’s hope?
Opportunities for discussion & exploration
Meaning contexts - religious, spiritual, cultural
Finding common ground
What about disclosure & my commitment to honesty?
o Content & process
o “while the truth may be brutal, telling it does not have to be”
6/24/2012 17
Hope & Care
How might we go about addressing hope(s)?
“Hope for the best, prepare for the worst” (Back & Quill, 2003)
Be curious, ask about it, listen
Seek the meaning for the pt/family
Be conscious of cultural nuances
Goal: respectful pt-centred “caring”
Decision-making according to pt-defined needs
An “ethic of care” lens (Tronto, 1993) - 4 phases, 4 moral elements
• Phase 1: caring about - moral element: attentiveness
• Phase 2: taking care of - moral element: responsibility
• Phase 3: care-giving - moral element: competence
• Phase 4: care-receiving - moral element: responsiveness
6/24/2012 18
III: Application
What about hope in other contexts, e.g.,
chronic illness?
o 3 trajectories (Lynn, 2005)
o Trajectory 2: advanced COPD
• woman late 50’s, angry, labeled “non-compliant”
• elderly male needing “everything done”
• woman mid-60’s, dies - daughter’s shock
Hope(s) issues…?
6/24/2012 19
Advanced COPD
COPD (chronic obstructive pulmonary disease)
prevalent, chronic, progressive, terminal illness
uncertainty due to unpredictable trajectory
significant physical, psychosocial, and spiritual care needs
hope & info important factors in coping
According to pts/families, COPD care lacks:
• continuity
• comprehensiveness
• relevance
6/24/2012 20
Hope in COPD…
Reality: living in shadow of death (Bailey, 2001) -
Isolation
Dependency
Stigma
Co-morbidity
Symptom burden > end-stage lung Ca - no PC
Fear: abandonment, being a burden, not having
enough info, what death may be like
Looking at the COPD cases:
HCPs’ hope v. pt’s hope…?
6/24/2012 21
Hope & COPD cont’d
Ethic of care – care begins with pt; personal,
subjective, contextual, responsive
Gaps in COPD: care begins & ends with HCP & institution
Relational - nature of hope
Isolation the norm in COPD
Agency - aspect of hope
Loss of independence natural course in COPD
Imagination - part of hope
Uncertainty in COPD – illness-related, personal & contextual,
decline is only certainty, source of + difficulty/hope/coping
Problematic Integration Theory (Babrow, 2001)
o uncertainty may be helpful in some ways, not in others
6/24/2012 22
IV: Integration
Thinking about your related experiences:
What hope(s) was/were part of the situation?
What was your role in this situation - as a HCP? As a person?
Whose interests/needs were central? Should this change?
What was important about what was going on? For whom?
What was at issue? Whose issue was it?
How did you handle it & would you do it differently now? How
and why?
Are there other resources that might be helpful?
Any other considerations you can think of?
6/24/2012 23
V: Conclusions
Summarizing:
Hope is a component of the moral core at the heart of all
HC encounters
Awareness of & appropriate attention to participants’
hope(s) is an important part of ethical decision-making &
effective Rx relationships
Hope-sensitive communication builds trust & effective Rx
relationships, facilitating the planning & delivery of
patient-centred care consistent with respect for persons
Respect for persons is at the heart of ethically sound
professional practice in HC
6/24/2012 24
Food for thought…
What assumptions do I make about patients’
hope(s)? “Difficult” pts? Non-compliant pts?
What hopes do I bring to my encounters with
patients & families? With colleagues?
What about the team dynamic…are we aware of
one another’s hope(s)? Does this matter?
What effect does hope have on stress levels?
6/24/2012 25
Pulling us over the horizon…
Hope is where the heart is…
“The best and most beautiful things in the world cannot be
seen, nor touched, but are felt in the heart.”
(Helen Keller)
6/24/2012 26
My appreciation to…
The patients and their families who have taught me so much…also,
Dr. Christy Simpson, Assistant Professor, Dept. Bioethics, Dalhousie
University, Halifax, NS, Canada, & NSHEN
Rev. Dr. Jody Clarke, Professor of Pastoral Theology, Atlantic School of
Theology, Halifax, NS, Canada
Dr. Deborah McLeod, Psychosocial Oncology Clinician, Cancer Care NS &
Dalhousie University School of Nursing, Halifax, NS, Canada
Dr. Graeme Rocker, Chair, Division of Respirology, QEII Health Sciences
Centre, CDHA, Halifax, NS, Canada
6/24/2012 27
