Spiritual Sensitivity at the End of Life

1. Spiritual Sensitivity at the End of Life Presented by Rev. Misti M. Johnson-Arce Chaplain, ACPE Supervisor VITAS Innovative Hospice Care Broward/Palm Beach

2. Part I: • What is your concept of Spirituality? • How would you define Spirituality? • Words that come to mind when you think of spirituality are…?

3. 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

4. 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.

5. 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

6. 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?

7. Spiritual Needs of the Dying “Humans are not destroyed by suffering, they are destroyed by suffering without meaning.” Man’s Search for Meaning Victor Frankl “The primary needs of the terminally ill are spiritual. More than anything else, the dying need meaning, hope and love.” Elisabeth Kubler-Ross

8. Wholistic Healthcare Model 1) Mind – Mental & Psychological 2) Body – Physical 3) Spirit – Spiritual & Emotional Inter-connected

9. Spiritual needs that can arise… • Search for Meaning and Purpose • HopeorHopelessness • Loveand Relationshipsor Abandonmentand Isolation and need forReconciliation and closure • Faith in or having questions aboutUltimate Presence/Higher Power • Dyingwith Dignityand inPeace

10. 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?

11. Try to… • Meet people where they are rather than having your own agenda. • Beaware of the doors patients and families may open and don’t 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.

12. 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.

13. Authenticity Empathy Genuine concern Time & Attentiveness “If we were supposed to talk more than listen, we would have two mouths and one ear.” - Mark Twain What qualities does it take to be an effective listener?

14. Be comfortable with Silence • Honor the perplexity, painand 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.

15. 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

16. 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

17. 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 understandingof all the health care components and poor instruction that can complicate overall care

18. 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

19. 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

20. 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!

21. Part II: Cultural Sensitivity

22. 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%

23. 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%

24. 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%

25. 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

26. 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

27. 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

28. 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

29. Veterans continued… • Can struggle with issues like • Survivor’s guilt, forgiveness, unworthy • Deconstructing and reconstructing theology • Addictions and depression • Estranged relationships • PTSD – post traumatic stress disorder

30. 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

31. 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

32. 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 • Don’t assume all are Christian – Muslim membership is growing

33. 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

34. Haitian Americans continued… • May be shy about sharing their lack of knowledge • Don’t assume nods of the head indicate understanding • Get them to repeat their understanding of what was heard, illustrated and reviewed

35. 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

36. 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

37. 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 God’s healing ability

38. 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

39. 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)

40. 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

41. 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

42. 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

43. Jamaican Americans continued… • Majority are Christian • Strong belief in Salvation and After-life • Use faith to find comfort during the grieving process

44. 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

45. 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

46. 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

47. 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

48. 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

49. 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

50. 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