Negotiating Uncertainty

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Negotiating Uncertainty

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

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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

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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

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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

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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 dont want her to die
• Real issues for all uncertainty hope(s)

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Perspectives

• 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
  basis
• Another way to label this?
• ethical dilemma - for HCP team values, profl
  practice,
• Why is it important to find a way to address
  these concerns?
• motivation, communication, behaviour
• therapeutic relationship
• decision-making care-planning

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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
  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

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Hope

• 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

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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)

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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
  think)
• 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
  agency
• patients/familys experience of care
• How to proceedapplying the ethics lens to
  hope

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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

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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?)

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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 pts best
  interests
• benevolence
• value service cure care - goals of medicine
• non-maleficence
• value do no harm
• justice
• value fairness equity of service

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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

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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
  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)

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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

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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
  hope?
• 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

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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

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III Application

• What about hope in other contexts, e.g., chronic
  illness?
• 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?

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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

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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?

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Hope COPD contd

• 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)
• uncertainty may be helpful in some ways, not in
  others

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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?

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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

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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 dynamicare we aware of one
  anothers hope(s)? Does this matter?
• What effect does hope have on stress levels?

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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)

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My appreciation to

• The patients and their families who have taught
  me so muchalso,
• 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