Palliative Care:Science & SpiritTogether AgainLinda Emanuel, M.D., Ph.D.Buehler Professor of Geriatric Medicineand Director of the Buehler Center onAging, Health & SocietyNorthwestern University, Feinberg Schoolof Medicine Keynote Address 50th Anniversary Convocation May 10, 2011
Origins of Palliative Care physical spiritualDAME CICELY SAUNDERS, OM, DBE, FRCP, FRCN social psychologicalFOUNDER AND PRESIDENTST CHRISTOPHER’S HOSPICE22 June 1918 - 14 July 2005Total pain: suffering in the physical, psychological, social, and spiritual domain.Was Cicely Saunders also the first scientist of spiritual suffering in modern medicine?
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
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
Defining Spirituality forPalliative 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
…Defining Spirituality forPalliative Care PurposesEuropean Association for Palliative Care taskforce on SpiritualCare in Palliative Care 2010Spirituality is the dynamic dimension of human life thatrelates to the way persons (individual and community)experience, express and/or seek meaning, purpose andtranscendence, and the way they connect to themoment, to self, to others, to nature, to the significantand/or the sacred.The spiritual field is multidimensional: • Existential challenges. • Value based considerations and attitudes. • Religious considerations and foundations.
The central subject matter…… of spirituality research for palliative careSpiritual physiology (well-being) and pathology (dis-ease) when facing death
Spiritual Physiology• What is the analogue to discovery of circulation? • William Harvey 1578 - 1657
Cicely Saunder’s implied postulate?The spiritual life physical spiritualprovides an integrativefunction, workingthrough attribution ofmeaning to connect ourexistence to the grand social psychologicalnarrative of existence.
Learning from Psychology, Social Science,and Psychiatry Research Methods • Grounded theory • Content analysis • Psychometrics • Observational psychology • Psychoanalysis • Neuroimaging •…
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.
Claiming our Own… 1. DignityTherapy?• 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
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
Something that lasts andlasts…• Mr. N from Nablus at Share Zedek Hospital• …
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?
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?
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
A life story• Is spiritual• Is a legacy• Telling it is one of the tasks of the dying roleDying 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
Dying Role Tasks• Pass on • Life roles • Symbolic things • Material things • Narrative meaning• Blessing• Planning dying• Preparing loved ones for bereavement
Claiming our Own… 2. TraumaResponse?• Illness as spiritual trauma • For some, not all • Why?• Psychology theory and post-traumatic stress • Resilience • Factors in resilience • Response as a major factor
Why does response matter?• Abandonment on par with active injury• Isolation as punishment• Eradication of experience as existential suffering• Willful eradication as cruelty
Therapeutic Response inSpiritual Care• Active listening• Co-creating narrative
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
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.