Religious and Spiritual Issues The Palliative Response

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Religious and Spiritual Issues The Palliative
Response

• F. Amos Bailey, M.D.

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Religion and Spiritualityat Lifes End

• Spiritual and religious concerns may develop or
  intensify at Lifes End
• Many patients are thinking about these issues in
  relationship to their health
• Many patients welcome an opportunity to talk
  about religious and spiritual issues as they
  relate to their current life experience

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Barriers to AddressingReligious and Spiritual
Issues

• Many persons at Lifes End have not expressed
  their existential concerns for fear of upsetting
  families and friends
• Many physicians feel unskilled, unprepared and
  uncomfortable talking to patients about religious
  and spiritual concerns

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Getting Started

• Ask open ended questions
• Use a format
• Listen and respond empathically
• Be familiar with resources
• Pastoral Care
• Social Work and counseling
• Communities of faith

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The FICA Format

• F Faith
• I Importance
• C Community
• A Address
• Christina M. Puchalski, M.D., M.S.
• The George Washington Institute for Spirituality
  and Health

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Faith

• Do you consider yourself a spiritual person?
• Is faith important to you?
• Most patients can answer this kind of question
• Include question in social history
• Normalize discussion of faith as part of routine
  and not a topic indicating that patient is
  imminently dying

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Importance

• Is your faith important in your life at this
  time?
• Have you been able to take comfort
• from your faith?
• May reveal sources of strength and support
• May guide physician in assisting patient to
  maintain sources of support

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Community

• Are you part of a spiritual
• or faith community?
• May reveal a source of support
• May reveal that individual has become isolated
  from faith community
• Frequent occurrence when chronic illness
• prevents participation in faith community
• Physician may be able to foster re-connection

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Address

• How can I address and respect
• these issues in your care?
• Patient may have important beliefs, practices and
  rituals that are not part of your tradition
• Understanding patients tradition early on
  allows the physician to be sensitive to needs

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Patients Response

• Many patients
• Speak openly
• Are grateful to physician for asking about this
  important part of life
• Express no specific concerns or needs

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When Patient Voices Concern

• Respond with
• Open-ended questions
• Comments to normalize the concern
• Help me understand what you mean
• Many people with serious illnesses ask such
  questions
• That sounds scary/troubling to me, too
• Do you have any thoughts about why this is
  happening to you (your family)?
• How does this make you feel?

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Discussion GuidelineShare vs. Fix

• Do
• Share patients wondering and questioning
• Share in what it is like to be human and to face
  what is at Lifes End
• Do Not
• Do not try to resolve (fix) the patients problem
• Do not try to answer unanswerable questions

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Discussion GuidelineFollow vs. Lead

• Do
• Stay within physicians role and expertise
• Be guided by patients own search
• Do Not
• Lifes End is not a time to proselytize
• Lifes End is not a time to try to convert a
  vulnerable individual
• Lifes End is not a time to impose personal
  religious or spiritual beliefs

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Discussion GuidelineSupport vs. Reassure

• Do
• Allow time and permission for people to express
  emotions
• Develop comfort with tears and range of feelings
• Do Not
• Do not offer premature or inappropriate
  reassurance
• Do not be a phony

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Discussion GuidelineQuestions about Physicians
Beliefs

• Answer simply
• I would like to keep the focus on you
• rather than me
• I am a person of faith
• Avoid a religious debate
• Most patients are grateful that physician
• is interested in this important part of who they
  are

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Steps of Palliative Response Assess

• For patients with life- threatening
• and life-limiting illness
• Clarify sources of hope and meaning
• Identify Goals of Care
• Maintain hope
• Honor preferences at Lifes End

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Steps of Palliative ResponseSupport

• Mobilize resources
• Healthcare team
• Patients community and community at large
• Patients spiritual/religious practice
• Solace
• Meaning
• Hope
• Connection

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Steps of Palliative Response Self-Care for the
Physician

• Develop healthy personal responses to
  experiencing the repeated loss of death
• Self-monitor and seek assistance as needed
• Depression
• Substance abuse
• Burn out

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Spiritual Distress The Palliative Response

• F. Amos Bailey, M.D.

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Spiritual QuestioningAt Lifes End

• Common
• Most patients have been thinking about spiritual
  issues and are open to discussion with physician
• Can be a major source of distress
• Existential
• Why things happen
• Not answered by science and medicine, which
  address how things happen
• Extends beyond formal religious beliefs

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Fostering Transcendence

• Transcendence is a state of meaning and hope
  providing connection with family and others
• across life-changing events
• ultimately across even death itself
• Individuals at Lifes End often struggle
• to maintain connections
• to achieve a sense of transcendence

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Examples of Transcendence

• If a member of your family has died
• do you still consider this person a part of
• your family?
• If so, you have achieved some degree of
  transcendence over death, since you are
  maintaining a connection with the person
• who has died

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Life as Defined by Meaning

• Examples of things that give life meaning
• Family
• Children
• Religious faith
• Career
• Patriotism and country
• Friends and community

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Life as Defined by Meaning

• The list continues
• Material possessions
• Pets
• Hobbies
• Causes, civic clubs, party affiliations
• The arts - music, literature, visual arts
• Nature

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Lifes End Often Threatens Our Sources of Meaning

• Everyone wants to go to heaven,
• but no one wants to die
• to get there.
• - H.L. Mencken

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Changing Relationship to Sources of Meaning

• The Patients Struggle
• To find meaning when can no longer maintain roles
  that gave life meaning
• May attempt to maintain meaningful roles beyond
  ability to perform them
• The Palliative Response
• Reframe and explore sources of meaning
• Strengthen, maintain, develop connections

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Suffering withLoss of Sources of Meaning

• Suffering
• The state of severe distress
• associated with events
• that threaten the intactness
• of a person
• - E. Cassell, 1991

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Spiritual/Existential Distress The Palliative
Response

• Ask and Listen
• Accept and normalize
• Acknowledge spiritual distress
• Confirm distress as part of suffering at Lifes
  End
• Explore
• Be willing and available to discuss spiritual
  issues
• Help patient incorporate this aspect of
  personhood into current life and illness

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Rx for Spiritual Distress Tell the Truth

• Offer honest assessment of probable prognosis and
  course of illness
• Helps patient/family plan and prioritize
• Attempting to shield people from harsh reality
  may result in their inability to accomplish
  important work of Lifes End

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Rx for Spiritual Distress Help Patient Prioritize

• Which is more important?
• Staying in town to take chemotherapy for stage IV
  lung cancer?
• or
• Visiting a daughter in another state who has
  just delivered a new grandchild?
• Tuesdays with Morrie shows how an individual may
  actively live at Lifes End

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Rx for Spiritual Distress Respond to All Suffering

• Excellent Symptom Control
• Frees time and energy to work out issues
• Community Resources
• Assistance to maintain efficacy at Lifes End
  (e.g., hospice)
• Pastoral Counseling
• Refer to Pastoral Care and/or faith community as
  appropriate for each individual

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Rx for Spiritual DistressReframe Helping

• Help as Support
• Support with truth and honesty
• Support to live life fully
• Support to live with joy, expectation, hope

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Rx for Spiritual DistressReframe Helping

• Help as Support Vs. Fix
• Not within our power resolve spiritual issues for
  others
• Must support people to find their way

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RX for Spiritual DistressHelp Patient Leave
Legacies

• Write letters and make videos
• (especially for children too young to remember)
• Tell and write stories
• Make scrapbooks
• Distribute personal belongings, mementos or
  heirlooms

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RX for Spiritual DistressHelp Patient Make
Memories

• Celebrate birthdays and holidays
• out of season
• Family reunions and get-togethers
• Physician can assist with time off from work for
  family

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Spiritual DistressThe Palliative Response

• Support process of finding meaning and achieving
  transcendence at Lifes End
• Process is unique for each patient and family