Slides from keynote addrress by Linda Emanuel, MD, PhD at HealthCareChaplaincy's 50th anniversary convocation in NYC May 10, 2011

1. Palliative Care:
Science & Spirit
Together Again
Linda Emanuel, M.D., Ph.D.
Buehler Professor of Geriatric Medicine
and Director of the Buehler Center on
Aging, Health & Society
Northwestern University, Feinberg School
of Medicine Keynote Address
50th Anniversary Convocation
May 10, 2011

2. Origins of Palliative Care
physical spiritual
DAME CICELY SAUNDERS, OM, DBE, FRCP, FRCN social psychological
FOUNDER AND PRESIDENT
ST CHRISTOPHER’S HOSPICE
22 June 1918 - 14 July 2005
Total pain: suffering in the physical, psychological, social, and spiritual domain.
Was Cicely Saunders also the first scientist of spiritual suffering in modern medicine?

3. Research in Palliative Care
• Physiology of pain
• Social science and philosophy of advance care planning
• Withdrawal & withholding of life-sustaining treatment
• Other physical symptoms
• Dyspnea (breathlessness), fatigue, nausea, anorexia (loss of
appetite), cachexia (weight loss), constipation, pruritis (itching), …
• Wound management
• Depression and Anxiety
• Bereavement
• Goals of Care
• Family Meetings

4. What about Spirituality Research?
• FICA – Christina Puchalski, MD
• Faith
• Importance
• Community
• Address
• European Association for Palliative Care
• 2009 US meeting
• Taskforce on Spiritual Care in Palliative Care 2010

5. Defining Spirituality for
Palliative Care Purposes…
• What it’s not:
• Physical well-being
• Social well-being
• Mental health
• What it is connected to:
• All of the above…
• Nature has essential bridges

6. …Defining Spirituality for
Palliative Care Purposes
European Association for Palliative Care taskforce on Spiritual
Care in Palliative Care 2010
Spirituality is the dynamic dimension of human life that
relates to the way persons (individual and community)
experience, express and/or seek meaning, purpose and
transcendence, and the way they connect to the
moment, to self, to others, to nature, to the significant
and/or the sacred.
The spiritual field is multidimensional:
• Existential challenges.
• Value based considerations and attitudes.
• Religious considerations and foundations.

7. The central subject matter…
… of spirituality research for palliative care
Spiritual physiology (well-being)
and pathology (dis-ease)
when facing death

8. Spiritual Physiology
• What is the analogue to discovery of circulation?
• William Harvey 1578 - 1657

9. Cicely Saunder’s implied postulate?
The spiritual life
physical spiritual
provides an integrative
function, working
through attribution of
meaning to connect our
existence to the grand social psychological
narrative of existence.

10. Learning from Psychology, Social Science,
and Psychiatry Research Methods
• Grounded theory
• Content analysis
• Psychometrics
• Observational psychology
• Psychoanalysis
• Neuroimaging
•…

11. Where is spirituality in the brain?
• FMRI
• Happiness and enthusiasm, and joy: left frontal cortex.
• Anxiety, sadness: right frontal cortex.
• Meditators enhanced left-sided activity; different decisions.
• Prayer less clear.
• Narrative meaning creation limited to components.
• A postulate
• Maybe spirituality is a network of connecting neurons, consistent
with the integrative function and meaning-making activities.
• So what
• If we knew we could look at music therapy, narrative therapy,
touch therapy, prayer, ritual, nature etc., etc.

12. Claiming our Own… 1. Dignity
Therapy?
• Dr. Harvey Chochinov as a young psychiatrist
• Depression consults among the hopelessly ill
• They were not depressed…
• …Especially after the evaluation
• When a taking a psychology history takes on more meaning
• Therapeutic touch, listening touch
• What was he listening to? hearing? Why did it matter?
• Stories; life narratives
• People want to tell their stories
• Especially near the end of life

13. Dignity Therapy
• What was meaningful
• What do you want to say to people
• 30 min – 1 hour of prompted narrative
• 2-3 days transcription, editing
• Present to patient as legacy document

14. Something that lasts and
lasts…
• Mr. N from Nablus at Share Zedek Hospital
• …

15. Dignity Therapy: 10 questions ..
1. Tell me a little about your life history; particularly the parts that
you either remember most, or think are the most important?
When did you feel most alive?
2. Are there specific things that you would want your family to
know and remember about you?
3. What are the most important roles you have played in life
(family, vocational, community service roles, etc)? Why were
they so important to you, and what do you think you
accomplished in those roles?
4. What are your most important accomplishments, and what do
you feel most proud of?
5. What are your hopes and dreams for your loved ones?

16. Dignity Therapy: 10 questions ..
6. What have you learned about life that you would want to pass
along to others?
7. What advice or words of guidance would you wish to pass
along to your [family member(s), other(s)]?
8. Are there things you want to say to your loved ones, or that
you want to take the time to say once again?
9. Are their words or instructions you want to offer your family, to
provide help prepare them for the future?
10. In creating this permanent record, are their other things that
you would like included?

17. Research and Hypothesis
• Well tolerated even by very ill patients
• Hugely appreciated
• Little impact on depression, anxiety
• Why?
• People were trying to enter dying role
• Modern medical setting was not accommodating
• He was hearing people enacting what he offered them that was part
of their dying role

18. A life story
• Is spiritual
• Is a legacy
• Telling it is one of the tasks of the dying role
Dying Role
• Roles often life cycle connected
• Roles guide us in unknown territory
• Roles connect us to others
• Roles have tasks/jobs
• Is there a dying role?
Emanuel, Bennett, Richardson J Palliat Med. 2007

19. Dying Role Tasks
• Pass on
• Life roles
• Symbolic things
• Material things
• Narrative meaning
• Blessing
• Planning dying
• Preparing loved ones for bereavement

20. Claiming our Own… 2. Trauma
Response?
• Illness as spiritual trauma
• For some, not all
• Why?
• Psychology theory and post-traumatic stress
• Resilience
• Factors in resilience
• Response as a major factor

21. Why does response matter?
• Abandonment on par with active injury
• Isolation as punishment
• Eradication of experience as existential suffering
• Willful eradication as cruelty

22. Therapeutic Response in
Spiritual Care
• Active listening
• Co-creating narrative

23. Adjustment to loss
Loss
Physical Psychological Social Existential
Adaptive
Processes
Comprehension
(i.e., realizing and affectively processing loss)
Creative Adaptation
Potential Mediators (i.e., disengaging from what is lost, reflection and adapting to the new situation)
Loss Characteristics Clinical /Demographic
Characteristics
Social and Psychological Well-being
Loss History
Reintegration
(i.e., understanding oneself in a new way with a past tense version of what was lost)
Knight S, Emanuel L J Palliat Med. 2007;10(5):1190-1198 Processes of adjustment to end-of-life losses: a reintegration model

24. Summary Take-Away
• The imperative is there:
• fellow humans are suffering spiritually as a result of having a
serious illness
• To fail to respond locks in their spiritual trauma
• The time has come for science and spirit to join
• Methods exist that we can build on
• We need definitions, key questions, bold hypotheses, testable
models, measures, testable interventions
• The dawn of an emerging discipline is ours for the shaping; we
should aim to do it well.