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 ConvocationMay 10, 2011

Origins of Palliative Care

DAME CICELY SAUNDERS, OM, DBE, FRCP, FRCNFOUNDER AND PRESIDENT ST CHRISTOPHER’S HOSPICE22 June 1918 - 14 July 2005

physical

social psychological

spiritual

Total 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 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

…Defining Spirituality for Palliative Care PurposesEuropean 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.

The central subject matter…

… of spirituality research for palliative care

Spiritual 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?

physical

social psychological

spiritualThe spiritual life provides an integrative function, working through attribution of meaning to connect our existence to the grand narrative 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. 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

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 and lasts…• 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 role

Emanuel, Bennett, Richardson J Palliat Med. 2007

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?

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. 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

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 in Spiritual Care

• Active listening

• Co-creating narrative

Adjustment to loss

Knight S, Emanuel L J Palliat Med. 2007;10(5):1190-1198 Processes of adjustment to end-of-life losses: a reintegration model

Comprehension(i.e., realizing and affectively processing loss)

Creative Adaptation(i.e., disengaging from what is lost, reflection and adapting to the new situation)

Adaptive

Processes

Reintegration(i.e., understanding oneself in a new way with a past tense version of what was lost)

Social ExistentialPsychologicalPhysical

Loss

Potential MediatorsLoss Characteristics Clinical /Demographic

Characteristics

Social and Psychological Well-being

Loss History

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.