Hope, Emotions, and the Provision of Palliative Care
Chris Feudtner, MD PHD MPHThe Department of Medical Ethics
The Pediatric Advanced Care Team (PACT)The Children’s Hospital of Philadelphia
THE RENÉE C. FOX LECTURE IN MEDICINE, CULTURE, AND SOCIETY
TUESDAY, 3 APRIL 2012
No Potential Conflict of Interest to Declare
A Mysterious Observation
Dante’s Inferno
“We are lost, afflicted only this one way:
That having no hope, we live in longing.” I heard
These words with heartfelt grief that seized on me
Knowing how many worthy souls endured
Suspension in that Limbo.
Translated by Robert Pinsky
Mystery to Mechanism
Outline
I. Describe a cohort study
II. Examine the effects of affect & hopeful thinking
III. Sketch the outlines of an emerging model
IV. Consider some practical implications
Decisionmaking Study 1
•Prospective cohort study
• Parents of patients who receive a palliative care consultation
• Standardized instruments and in-depth interview
• 6 month follow-up regarding processes of care and parental outcomes
• National Institute of Nursing Research
The Effects of Affect
Depression
Anxiety
Negative Affect
Positive Affect
Positive & Negative Affect
!
Illness Trajectory
!
What relationship?
???New Limit of
Intervention Order(n=19/41 Patients)Negative Affect
Positive Affect
Illness Trajectory
BASELINE FOLLOW-UP
Analyzed Singly
New Limit of Intervention Order(n=19/41 Patients)Negative Affect
Positive Affect
1.85 (p=0.03)
UnivariateOdds Ratio
0.79 (p=0.45)
Illness Trajectory
2.14 (p=0.03)
BASELINE FOLLOW-UP
Insights
• The world is dark and light
• Management of polyvalent emotions is challenging yet crucial
Hopes
Many meanings of hope:
• Pandora and her jar
What is hope?
What is hope?
A psychological definition (CR Synder):
• Individuals ‘experience’ hope when they have an expectation that a desired goal can be achieved.
• Three components:✴ Goals
✴ Pathway Thoughts (“Way Power”)
✴ Agency Thoughts (“Will Power”)
Hopeful Thinking
Were parents with higher levels of
hopeful thinking more or less likely to have an LOI?
Analyzed Jointly
AdjustedOdds Ratio
Limit of Intervention Order(n=19/41 Patients)Negative Affect
Positive Affect
Hopeful Thinking
2.02 (p=0.06)
0.44 (p=0.09)
2.73 (p=0.04)
Illness Trajectory
1.72 (p=0.21)
BASELINE FOLLOW-UP
Emerging Model?
Limit of
Interventions
Order
Other Non-
Curative
Goals
Curative
Goals
Goals→Regoaling
Limit of Interventions
Order
Create a new goalCritique and supplant
a current goal
Other Non-Curative Goals
Curative Goals
Goals→Regoaling
Limit of Interventions
Order
Negative Affect Positive Affect
Create a new goalCritique and supplant
a current goal
Thoughts on Child's Illness Trajectory
HopefulPatterns of
Thought
Other Non-Curative Goals
Curative Goals
Limit of Interventions
Order
Negative Affect Positive Affect
Create a new goalCritique and supplant
a current goal
"Broaden and Build"
Thoughts on Child's Illness Trajectory
"Sad butSmart"
"Goal Appraisal & Rumination"
"Affect Valence & Availability"
"Risk Aversion""Emotional
Disclosure"( — )
HopefulPatterns of
Thought
Other Non-Curative Goals
Curative Goals
Time out ...
Is that all?
What about aparental sense of duty?
“To be a Good Parent”With my colleague & collaborator Pamela Hinds, PhD RN
• Advocating for my child
• Focusing on my child having as long a life as possible
• Focusing on my child's comfort
• Focusing on my child's health
• Focusing on my child's quality of life
• Focusing on my child’s spiritual well-being
• Keeping a positive outlook
• Keeping a realistic outlook
• Making informed medical care decisions
• Making sure that my child feels loved
• Putting my child's needs above my own
• Staying at my child's side
“To be a Good Parent”Rolling N = 133
0 5 10 15 20
Making sure that my child feels lovedFocusing on my child's healthMaking informed medical care decisionsAdvocating for my childFocusing on my child's quality of lifeFocusing on my child's comfortPutting my child's needs above my ownStaying at my child's sideKeeping a positive outlookAs long a life as possibleMy child’s spiritual well-beingKeeping a realistic outlook
Importance
Mechanism & Mystery
Dante’s Paradiso
High phantasy lost power and here broke off;
Yet, as a wheel moves smoothly, free from jars,
My will and my desire were turned by love,
The love that moves the sun and the stars.
Translated by Dorothy Sayers & Barbara Reynolds
Duties
Limit of Interventions
Order
Negative Affect Positive Affect
Create a new goalCritique and supplant
a current goal
"Broaden and Build"
Thoughts on Child's Illness Trajectory
"Sad butSmart"
"Goal Appraisal & Rumination"
"Affect Valence & Availability"
"Risk Aversion""Emotional
Disclosure"( — )
HopefulPatterns of
Thought
Other Non-Curative Goals
Curative Goals
Patient-Centered
Clinicians Patient
Patient-Centered, Family Involved
Clinicians Patient
Family Members
Patient-Centered, Family Engaged
Clinicians Patient
Family Members
Not just parents ...
• Systems awareness and systems design are important for health professionals but are not enough. They are enabling mechanisms only.
• It is the ethical dimension of individuals that is essential to a system’s success.
• Ultimately, the secret of quality is love. You have to love your patient, you have to love your profession, you have to love your God.
• If you have love, you can then work backward to monitor and improve the system.
Interview of Avedis Donabedian with Fitzhugh Mullan Health Affairs, Jan/Feb 2001, p. 140
ClinicalImplications
DiscussDepictions & Hopes
• Can you help me understand, from your point of view, what is going on?
• Given what your child is up against, what are your hoping for?
Work with Heuristics
• Framing - “I have seen loving parents ...”
• Anchoring - “... given what you child is up against ...”
• Revising the frame, resetting the anchor:
Re-goaling
✴ “What else are you hoping for?”
AugmentPathway Thoughts
• Explore alternative action scenarios✴ “Symmetric unpacking”
✴ Availability
• Ease or comfort of imagining event
• Personal experience with similar events
Augment Agency Thoughts
• Identity, meaning, and life story narratives
• “... loving parents ...”
• The threat of senselessness
✴ Grosse Fuge …
• Narrative work towards sense-making
• The notion of co-authorship
Deeper Questions
• What separates the ‘management’ of hope from the ‘manipulation’ of hope?
• What role do physicians and nurses have – or should have – challenging cultural tropes that influence goals and life story identity?
• Where does love figure into ethics?
Conclusions
• Hopes and hopeful patterns of thinking are powerful influences on decisionmaking ... and in unexpected ways
• We need to develop and test techniques to enhance our ability to communicate collaboratively and partner effectively with parents, both regarding thoughts & feelings
Thank you
