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Negotiating Uncertainty


What hopes do I bring to my encounters with patients & families? With colleagues? ... Pulling us over the horizon... Hope is where the heart is... – PowerPoint PPT presentation

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Title: Negotiating Uncertainty

Negotiating Uncertainty
  • Hope, Truth-telling, Ethics in Professional
  • Catherine Simpson, PhD(c), IDPHD Program
  • Dalhousie University, Halifax, NS, Canada

  • 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
  • Learning from each other - group experience
  • V. Conclusion
  • Summary
  • Food for thought…

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
  • Share emerging insights in the larger group

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, Abs
  • 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 compls - quadraplegia
  • pt refusing a) to eat or drink

What is at issue… for whom?
  • Case 1 Pt I want everything done…
  • Subtext My hope is to live another hour, day,
  • 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
  • Subtext we dont want her to die…
  • Real issues for all uncertainty hope(s)…

  • For the team members?
  • difficulty negotiating a care plan they can feel
    good about
  • seeing pts hope(s) as the main problem
  • uncertainty - how to change pts hope on what
  • Another way to label this…?
  • ethical dilemma - for HCP team values, profl
  • Why is it important to find a way to address
    these concerns?
  • motivation, communication, behaviour
  • therapeutic relationship
  • decision-making care-planning

II Theory
  • Issues
  • hope/false hope truth-telling
  • doing the right thing - professional ethics
    for this patient v. for all patients
  • care-planning decision-making - communication
  • Taking into account that perspectives vary
  • By agent patient family HCPs hospital
  • By context acute care v. PC v. community-based
  • variation by service - eg., ICU, geriatrics, etc
  • variation inter- intra-community - rural,
    urban, SES, etc

  • pervasive, illusive concept
  • Definition
  • Hope is an emotional attitude related to
  • desires/wants re particular outcome(s)
  • personal values/goals
  • actively imagined, realizable possibilities
  • 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?
  • individualistic
  • imaginative potential
  • agentic
  • relational

Hope (contd)
  • 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)

Hope in Situ…
  • Thinking back to the cases, … and keeping
    definitional implications in mind
  • hope is context person relative
  • the presence/absence of hope is most acutely felt
    in times of uncertainty change
  • hope can be influenced by significant others
    (though it has more resilience than we might
  • What about the hope dynamics in the three cases?
  • desires/values/goals, identity - emotion anger,
    fear, uncertainty
  • motivation (conscious and unconscious, pts
    HCPs) - words /or behaviour - communication
  • integrity of the therapeutic relationship -
    trust, decision-making
  • potential to support or erode pts sense of
  • patients/familys experience of care
  • How to proceed…applying the ethics lens to

  • 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
  • medicine - physiology/disease/cure focus
  • recent more holistic focus - expanded
    psychosocial-spiritual/ illness/care focus,
    respect for persons perspective, more
  • hope messages - implicit, part of it -
    obligation to promote (encourage, nurture) hope
    in pts
  • Hope is the physician of every misery (Irish
  • rooted in benevolence, non-maleficence as well

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
  • 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

Ethics Bioethics
  • Decision-making - many different ethics
    frameworks to guide deliberations
  • Decision-making in HC - 4-principle bioethics
  • respect for autonomy
  • value self-determination, respect pts best
  • benevolence
  • value service cure care - goals of medicine
  • non-maleficence
  • value do no harm
  • justice
  • value fairness equity of service

Bioethics Hope
  • Respect for autonomy - informed choice
  • attention to 5 elements
  • Capacity
  • Disclosure - Dx, Px, Rx options, risks v.
    benefits, recs
  • Understanding
  • Voluntariness
  • Authorization
  • Hope a factor in disclosure aka truth-telling
  • pts choice - offering truth (Freedman, 1993)
  • what is heard, how it is interpreted
  • HCPs choice - what, when, how, to whom

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
  • power differential - expertise certainty
  • pressure for truth-telling more info - lessen
  • 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)

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

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 dont challenge, am I endorsing the pts
  • Opportunities for discussion exploration
  • Meaning contexts - religious, spiritual, cultural
  • Finding common ground
  • What about disclosure my commitment to honesty?
  • Content process
  • while the truth may be brutal, telling it does
    not have to be

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
  • Phase 2 taking care of - moral element
  • Phase 3 care-giving - moral element competence
  • Phase 4 care-receiving - moral element

III Application
  • What about hope in other contexts, e.g., chronic
  • 3 trajectories (Lynn, 2005)
  • Trajectory 2 advanced COPD
  • woman late 50s, angry, labeled non-compliant
  • elderly male needing everything done
  • woman mid-60s, dies - daughters shock
  • Hope(s) issues…?

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

Hope in COPD…
  • Reality living in shadow of death (Bailey, 2001)
  • Isolation
  • Dependency
  • Stigma
  • Co-morbidity
  • Symptom burden gt 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. pts hope…?

Hope COPD contd
  • Ethic of care care begins with pt personal,
    subjective, contextual, responsive
  • Gaps in COPD care begins ends with HCP
  • 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
  • Problematic Integration Theory (Babrow, 2001)
  • uncertainty may be helpful in some ways, not in

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
  • What was important about what was going on? For
  • 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?

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
  • 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

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
    anothers hope(s)? Does this matter?
  • What effect does hope have on stress levels?

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
  • (Helen Keller)

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