Spiritual Sensitivity at the End of Life

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Spiritual Sensitivity at the End of Life

• Presented by Rev. Misti M. Johnson-Arce
• Chaplain, ACPE Supervisor
• VITAS Innovative Hospice Care
• Broward/Palm Beach

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Part I

• What is your concept of Spirituality?
• How would you define Spirituality?
• Words that come to mind when you think of
  spirituality are?

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Defining Spirituality

• Fundamental concept that there is a transcendent
  dimension to life. ..having a sense that there is
  an existence of something or someone greater than
  ourselves and our own ego
• Developing a relationship with whom or what we
  consider to be that Higher Power
• Focuses on a sense of connectedness
• Hard to measure directly

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Defining Religion

• An organized system of beliefs and practices that
  provides tools for people to develop and nurture
  their spirituality (relationship with a Higher
  Power.)
• A formalized venue through which spirituality can
  be practiced within a community of like minded
  individuals.

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Religious beliefs can

• provide a conceptual framework
• are often grounded in sacred texts
• are rich with various practices that can provide
  meaning comfort
• Prayer, rituals, readings, music, funeral
  services, memorials

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Religion and Spirituality

• Both can be connected to our search for meaning
  and purpose
• Why are we here?
• What meaning does life have?
• How do we deal with pain suffering?
• How do we deal with loss and death?

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Spiritual Needs of the Dying
The primary needs of the terminally ill are
spiritual. More than anything else, the dying
need meaning, hope and love. Elisabeth
Kubler-Ross

• Humans are not destroyed by suffering, they are
  destroyed by suffering without meaning.
• Mans Search for Meaning
• Victor Frankl

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Wholistic Healthcare Model

• 1) Mind Mental Psychological
• 2) Body Physical
• 3) Spirit Spiritual Emotional
• Inter-connected

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Spiritual needs that can arise

• Search for Meaning and Purpose
• Hope or Hopelessness
• Love and Relationships or Abandonment and
  Isolation and need for Reconciliation and closure
• Faith in or having questions about Ultimate
  Presence/Higher Power
• Dying with Dignity and in Peace

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Spiritual distress

• Do they struggle with guilt or shame?
• Do they question self-worth?
• Are they seeking forgiveness?
• Do they fear the unknown?
• Do their views differ from family friends?
• Are they angry?

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Try to

• Meet people where they are rather than having
  your own agenda.
• Be aware of the doors patients and families may
  open and dont be afraid to follow. If it is out
  of your scope of practice, acknowledge that you
  heard them and have a trained chaplain visit.
• Be comfortable with the pace they set.

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Try to understand

• what is important to them
• from where their identity and sense of purpose
  comes
• how they use their beliefs, inner strength and
  past experiences to cope with life and death
• At all times, convey respect and sincerity.

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What qualities does it take to be an effective
listener?

• If we were supposed to talk more than listen,
  we would have two mouths and one ear.
• - Mark Twain

• Authenticity
• Empathy
• Genuine concern
• Time Attentiveness

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Be comfortable with Silence

• Honor the perplexity, pain and sacredness
• Do not try to fix-it with magic words.
• Appropriate touch on the arm or hand can be a
  great connector.
• Do not underestimate the power of your caring
  presence and subtle reminder that they are not
  alone in this journey.

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Role of Religious Community its Leaders in
Health Care

• Can be helpful to those who are actively involved
  in a faith community or wish to be reconnected
• Can provide
• education explanation regarding their beliefs
  and practices related to health care, ethical
  decision making, end-of-life care and the dying
  process
• pastoral care and emotional spiritual comfort
• leadership for rituals services

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Religious Leaders continued

• Personal education varies
• Work with persons who desire to know more about
  the God or Higher Power in which they believe
• Learn the history of their particular faith group
  and origination of their church, temple, or
  mosque
• Educate others on that particular belief system

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How benefits of religion can be compromised.

• Some well intentioned religious leaders can cause
  harm
• With inappropriate responses
• With lack of response or void of presence
• Limited understanding of all the health care
  components and poor instruction that can
  complicate overall care

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Chaplains

• Work in a pluralistic setting
• With patients, families and staff that come from
  a variety of cultures and faith backgrounds
• Focus on spiritual care
• broader than any specific religion
• work to meet people where they are rather than
  impose any particular belief system
• know enough about other religions to be
  respectful and refer to elements individuals may
  find meaningful for themselves
• Use their expertise and resources

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Professionally certified chaplains have

• a Master of Divinity degree
• A minimum of 1600 hours of Clinical Pastoral
  Education training
• Participate in an Action reflection model of
  learning in a clinical setting
• Gain experience working with an interdisciplinary
  team
• Have significant interpersonal skills
• Often have backgrounds in psychology or sociology

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Remember

• Everyone is unique.
• Listen and learn from them.
• Be a non-anxious presence.
• Be patient and compassionate.
• Let your heart be touched.
• Let your Spirit lead when it comes to emotional
  or spiritual support.
• Call a professionally trained chaplain when
  needed!

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Part II

• Cultural Sensitivity

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Cultural Demographics of Broward County taken
from US Federal Census Bureau 2004

• General Population in 2004 - 1,754,893
• European American/White 71
• African American/Black 24.4
• (includes persons from Caribbean Islands)
• Latin American/Hispanic 21
• Asian American 2.9
• Native American or Alaska Native - .3

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Cultural Demographics continued

• Indian American lumped with Asian Am
• Persons Reporting 2 or more races 1.4
• Language other than English spoken at Home
  28.8

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Other Demographics

• Highschool graduates (25) 82
• Bachelors degree or (25) 24.5
• Persons age 65 and older 14.2
• Socio-economic information
• Median household income (2003) 23,170
• Percentage below poverty (2003) 12.5

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Gays and Lesbians 1.74

• Greatly under-reported (2000 census)
• On census as in same-sex partnerships
• Not included
• Singles, bi-sexual and transgender
• Broward County has the highest representation in
  Florida
• more like 10
• 2nd only to San Francisco, California

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Issues with which Gays and Lesbians May Struggle

• Self esteem and self worth
• Fear that sexual orientation is punishable
• May be estranged from family of origin, isolated
  and/or lonely
• Who they define as family can be discounted

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Gays Lesbians continued

• Issues regarding guardianship and legal surrogacy
• Partner can be removed from decisions making
  process if legal documents are not in place
• May be excluded from hospital visitation, funeral
  service
• May be forced to grief alone

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Veteran Americans 11.5

• Service to country Connected to their identity
  and purpose
• Loss of independence and autonomy
• Worry about burdening others
• Sometimes feel disrespected and unappreciated
• Distinguished honors and benefits for burial

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Veterans continued

• Can struggle with issues like
• Survivors guilt, forgiveness, unworthy
• Deconstructing and reconstructing theology
• Addictions and depression
• Estranged relationships
• PTSD post traumatic stress disorder

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African Americans

• Establish trust first
• Maintain good eye contact, listen to their
  concerns first
• Be understanding non-authoritative
• Explain what you are doing and why
• Educate without dictating or patronizing

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African Americans continued

• Extended family is important
• Inform but let them make their own decisions
• Preplanning a funeral may be considered giving
  up or premature
• Lots of respect for the person who died

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African Americans continued

• Bedside rituals at the time of death can take
  many hours
• Express emotions openly
• Funerals are significant community events
• Often have their own religious leader
• Dont assume all are Christian
• Muslim membership is growing

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Haitian Americans

• Haiti has been plagued with political violence
  for centuries
• Speak French, Creole and English
• Many were never taught to read or write
• Educational material should include visual and
  oral instructions

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Haitian Americans continued

• May be shy about sharing their lack of knowledge
• Dont assume nods of the head indicate
  understanding
• Get them to repeat their understanding of what
  was heard, illustrated and reviewed

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Haitian Americans continued

• Lower thresholds for pain
• Privacy is very important
• Physical body exposed
• Personal information exposed without permission
• Herbal and homecare remedies may be used

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Haitian Americans continued

• Close with family
• Pull together to help care for sick relative
• Respect Elders
• Children struggle to care for their parents and
  work outside the home
• May avoid eye contact with persons in authority

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Haitian Americans continued

• Majority are Catholic
• May appreciate rosary beads, medallions and
  figures of saints
• Appreciate sacraments
• Communion
• Anointing of the Sick
• Have a high regard for Gods healing ability

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Haitian Americans continued

• Voodoo may also be practiced
• African roots, calling on spirits
• May believe hexes can be placed on them
• Physical illness, mental illness, depression

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Haitian Americans continued

• When death is imminent
• Large groups of family may gather
• Appreciate sharing stories, participating in
  rituals prayer
• May bring in religious items and other things
  that could be believed to have magical power of
  protection
• Expressive with emotions around grief
• (Women)

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Haitian Americans continued

• Elder Kinsman
• Person in family seen as an authority
• Coordinates funeral arrangements
• Coordinates notification to others
• Cremation usually not acceptable
• Final ritualistic bath by family member

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Haitian Americans continued

• Dernie Priye
• Prayer service that facilitates the soul passing
  from this world to the next
• Transpires over 7 consecutive days of prayer
• Prise de Deuil
• Mass on 7th day
• Begins official mourning process

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Jamaican Americans

• Freely express emotions around grief
• Funerals and wakes are community events that last
  for days
• May hire criers/wailers
• Family often sponsors celebratory party to honor
  the life of the one who died

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Jamaican Americans continued

• Majority are Christian
• Strong belief in Salvation and
• After-life
• Use faith to find comfort during the grieving
  process

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Latin Americans

• Many variations and sub-cultures
• Spanish is the primary language
• La Familia - family is very important
• Help make decisions
• Patient may not want to make decisions for self
• Establish Durable Power of Attorney

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Latin Americans continued

• Mother of household often makes decisions about
  care
• Respect oldest male also
• Hospitality and Socializing
• Legal citizenship sensitive issue
• Education on food hydration is very important

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Latin Americans continued

• Use nursing facilities only when absolutely
  necessary
• Death can be viewed as the end of returning to
  their native country
• Freely express emotions and want to be physically
  present at time of death
• Find it challenging to let go because
  relationships can be quite deep

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Latin Americans continued

• Roman Catholic
• Sacrament of the Sick last rites
• Communion conversation with a priest
• Evangelical Protestantantism growing
• Desire pastoral presence, prayers
• Santeria/Espiritismo
• Sect combining Roman Catholicism African
  religion
• Only shaman touches body Bury within 24 hrs

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Asian Americans

• Many ethnic and cultural groups
• Ask their ethnicity and express interest in their
  particular culture
• Family is of high value
• Hospice care at home is appealing
• - Circumstances causing them to use facilities
  may elicit guilt

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Asian Americans continued

• Also value
• Hard work and self discipline
• Education
• Respect for elders
• Keeping family matters private
• Maturity, wisdom and dignity
• Proper social conduct - polite

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Asian Americans continued

• Expressing feelings is not encouraged
• Guilt and shame can be used to dictate certain
  social behaviors
• Generally a high tolerance for pain
• Often fear addiction to medication
• May be open to herbal medicines

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Asian Americans continued

• May believe illness is a result of imbalance or a
  punishment
• Using the word death may not be permitted in
  some homes
• If illness is terminal
• Consult with family spokesperson first
• Usually father or oldest son
• Allow family to inform patient

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Asian Americans Continued

• Variety of faith groups represented
• Buddhism
• Muslim
• Hinduism
• Confucianism
• Christian Roman Catholic Protestant
• Judaism

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Part III Religious Sensitivity

• How Different World Religions View Death and Cope
  with the Grieving Process

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Christian

• Believe in Jesus Christ as Savior
• Believe in Triune relationship
• God, Son Holy Spirit
• Roman Catholic
• Protestant Denominations
• Baptist, United Methodist, UCC, Presbyterian,
  Episcopal, AME, Lutheran, Pentecostal, others.

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Christian beliefs about the Dying Process

• Suffering
• United with Christs suffering
• Find comfort in peace that will come in eternal
  life
• Body
• Spirit leaves the physical body and is
  transformed in heaven
• God
• Rely on teachings and promises of God about heaven

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Prayers that Comfort

• The Lords Prayer
• Your kingdom come, your will be done Give us
  this day our daily bread Forgive our sins as we
  forgive those who have sinned against us And
  lead us not into temptation
• Prayers from the Heart
• Closed in Jesus Name
• Hail Mary mother of God (Roman catholic)

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Scriptures that Comfort

• Psalms 23, 121, 139.
• I shall fear no evil, for thou art with me.
• New Testament
• Gospels Matthew, Mark, Luke John
• Anything that might comfort, give permission,
  inspire, or offer hope
• Isaiah, Job, Romans, Corinthians, Rev
• Nothing can separate us from the love of God.
  Romans 835

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Sacraments of the Christian Church

• Protestant
• Baptism 2) Communion
• Roman Catholic
• 1) Baptism 2) Confession Reconciliation
• 3) Communion 4)Confirmation 5)Marriage
  6) Holy Orders 7) Anointing of the Sick
• Sacrament of the Sick, last rites or
  extreme unction

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Sacraments continued

• Communion
• Signifies the Body and Blood of Christ
• Those that eat of my body and drink of my blood
  will have eternal life
• Eucharistic assistants can offer elements if
  blessed by pastor or priest

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Sacraments continued

• Confession and Reconciliation
• Confess sins to priest
• express remorse
• Absolution and grace given
• I pardon you from your sins in the name of the
  Father, Son and Holy Spirit.

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Sacraments continued

• Anointing of the Sick
• also Sacrament of the Sick and Last Rites
• Administered at the onset of illness and/or near
  impending death
• Carries through hospitalization
• Important prior to death
• Through this holy anointing may the Lord in his
  love and mercy help you with the grace of the
  Holy Spirit. Reminder of Christs presence

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Ethical Teachings. (RC Ethical Religious
Directives 2001)

• Artificial nutrition and hydration
• Must weigh benefits and negatives
• can be given as long as this is of sufficient
  benefit to outweigh burdens
• Hydration and nutrition are not morally
  obligatory either when they bring no comfort to a
  person who is imminently dying or when they
  cannot be assimilated by the persons body.

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Jewish

• Levels of Observance
• Orthodox
• Conservative
• Reform
• Reconstructionist
• Unaffiliated
• All generally celebrate major holidays Rosh
  Hashanah, Yom Kippur, Passover

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Jewish continued

• Responses depend on level of observance
• Share heritage and culture
• Want to be reconnected and blessed at the end-
  of-life
• Holocaust
• shared history and memory of discrimination and
  mass killings
• May struggle with guilt or anger

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Jewish continued

• Sabbath (Shabbat)
• begins Friday evening
• Torah 5 books of Bible (Old Testament)
• Kosher food
• prepared according to religious requirements
• no animal blood mixing with dairy products

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Jewish continued

• most western practices of medicine are accepted
• desire Rabbi visit when gravely ill or near death
• Vidui Jewish Prayer of Confession
• Might also desire readings from Psalms
• Believe God is the true judge
• Love is expressed through good deeds
• Dying persons are not to be left alone

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Jewish continued

• Ethical considerations
• High respect for preserving life and dignity
• Not to hasten or impede death
• Quality of life considered
• Lengthening of distress and intensity of pain
• Lack of treatable methods and resources
• Withholding permitted
• Withdrawing not permitted

68
Jewish continued

• Funeral preparation
• Chevra Kadisha - Rabbi or funeral home will
  arrange for burial society to come
• Tahara washing ritual for purification and
  wrapped in linen shroud and/or prayer shawl
• Burial within 24 hours if possible
• Shomer stays with body and recites psalms and
  prayers until burial

69
Jewish continued

• No embalming unless being transferred to another
  state
• All Equal in death
• plain wooden caskets, no flowers
• Dirt placed on top of casket at grave
• Mourners Kaddish
• Prayer often recited at funeral to remind
  everyone of the roots they share and the
  community in which their grief is held
• Psalms

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Jewish continued

• Mourning customs
• Shiva 7 days of intensive mourning
• Sheloshim 30 day mourning period
• One year anniversary-
• recite Kaddish
• Unveiling tombstone ceremony at the grave
• Yahrzeit annual memorial of death

71
Jewish continued

• Beliefs about Afterlife
• Sheol biblical view of netherworld
• Gehinom place of punishment
• Resurrection 2nd coming
• Reincarnation-
• Immortality of the soul souls return to God but
  stay alive in ones memory
• Angels watch over

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Islamic/Muslim

• Allah - God
• Muhammed Highest Prophet
  peace be upon him
• Imam - Religious Leader
• Quran holy book of teachings
• Prayer rug for prayer 5x per day
• Mecca/Makkah holy city

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Islam continued

• 5 Pillars of Faith
• 1) Declaration of Faith shahadah
• 2) Prayers Salat
• 3) Fasting Sawm
• 4) Almsgiving (Charity) Zakat
• 5) Pilgrimage Haj
• Exempt when seriously ill

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Islam continued

• Important to remember
• Modesty and Privacy
• Same sex caregivers preferred
• Cleanliness
• Laws against skin exposure
• Dont eat pork nor accept medications with pork
  by products

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Islam continued

• Discussing dying process can be perceived as
  being too open
• Illness may be considered atonement for sins
• Suffering has purpose and closeness with Allah
• Although exempt, dying person may want to face
  Mecca for prayer

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Islam continued

• Ethical considerations
• Death should not be hastened
• Maintaining artificial life support for an
  extended period of time when patient is in
  vegetative state is discouraged
• Autopsy not permitted unless required by law
• Organ donation not permitted

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Islam continued

• Death and Dying
• Shahadah prayer recited by family as patient is
  dying
• Soul separates from body at moment of death and
  kept in transitional state until Day of
  Resurrection
• Body washed wrapped in white cloth

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Islam continued

• Nations of Islam
• Growing in African American subgroups in US
• Growing in federal prison system
• Sense of Security and Community

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Buddhism

• One of the worlds largest religions
• Practiced in at least 49 countries
• 2 types primarily established in US
• Zen and Tibetan
• Differ in cultural interpretation
• Same essential spiritual teachings
• Meditation to gain deeper insight is key

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Buddhism continued

• Basic beliefs
• Four Noble Truths
• Suffering physical, mental and spiritual
• Cause desire rooted in ignorance
• Cessation liberation (Nirvana)
• Eightfold Noble Path

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Buddhism continued

• Eightfold Noble Path
• Right view
• Right intention
• Right speech
• Right action
• Right effort
• Right livelihood
• Right mindfulness
• Right concentration

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Buddhism continued

• Mindful living
• Be compassionate, loving and kind
• Be generous
• Honor the existence of all life
• Treat people equally
• Impermanence

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Buddhism continued

• Mindful dying
• Death is a part of life -indefinite
• Dying process can
• Give insight into impermanence
• Give insight into suffering
• Practice patience and compassion
• Increase awareness and achieve moments of
  enlightenment

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Buddhism continued

• During dying process
• Keep a positive and calm attitude
• Eliminate distractions
• Increase silence, relaxation, calm breathing and
  gentle touch
• chants, incense and ritual objects
• May be important to leave the body undisturbed
  for as long as possible after death to allow the
  spirit to leave