Cultural & Religious Considerations in End-of-Life Care and the Donation Decision

1. Cultural & Religious Considerations in End-of-Life Care and the Donation Decision Hedi Aguiar, RN, CCRN, BA(Hons) Hospital Communications Specialist, OneLegacy

2. Question to Run on: How comfortable are you with your knowledge of cultures and religions and how does that impact your care?

3. Foundational Steps Definitions of Culture, Ethnicity, and Race and the Differences Between These Terms

4. Working Definitions • Culture is requires a broad definition and so it should include: • Ethnographic variables (e.g., nationality, ethnicity, language, and religion) • Demographic variables (e.g., age, gender, place of residence, and generation) • Status variables (e.g., social, economic, and education) • Affiliation variables (e.g. formal and informal group memberships) (Friedman et al, 2003)

5. Definition of Culture “Culture is defined as a specific set of social, shared, educational, religious, and professional behaviors, practices and values that individuals learn and ascribe to while participating in or outside of groups with whom they typically interact.” (Bomar, 2004)

6. Definition of Ethnicity • Ethnicity: • “is a key facet of culture and refers to a common ancestry, a sense of “peoplehood” and group identity. From a common ancestry and a shared social and cultural history and national origin have evolved shared values and customs.” (Giger & Davidhizer, 1999, McGoldrick, 1993)

7. Definition of Race • Race: • “is an ancient, nonscientific, political classification of human beings and is based on physiological characteristics, such as skin color, eye shape, and texture of hair.” (Melville, 1988) • It is a narrower term then ethnicity and denotes a human biological definition.

8. Important Clarifications • Race and ethnicity should NOT be confused • People of one race can vary in terms of their ethnicity and culture • Race is NOT considered a correct or useful means of classifying people • There are no distinct, pure races today • Religion is very much entwined with ethnicity, shaper of health values, beliefs, and practices.

9. Thought Question Knowing that people of one race can vary in terms of their ethnicity and culture, can we truly make assumptions about someone based on their biologically looks or even based on the little we may know of their “culture” or “ethnicity”?

10. Why Cultural Competence? Leininger states “Nurses are awaking to the critical need to become more knowledgeable and culturally competent to work with individuals of diverse cultures. “ (cited by Campinha-Bacote, 1996)

11. Culture Assessed by Observation • Dress • Appearance • Speech • Educational Background

12. Preconceived Ideas • About cultures • African American • Filipino • Hispanic • Asian • About religions • Jewish • Jehovah Witness • Hindu • Bias vs. reality

13. Asians - Filipinos • Values in Death and Dying • Death is a spiritual event, family may want to wash the body, will want all the family to say good-bye prior to the body being taken • Belief in Donation • The body is given high respect, cremation is not common practice, may not allow donation

14. Asians - Cambodians • Values in Death and Dying • Monks need to recite prayers, family members should be present, family faces death quietly, incense may be burned. • Belief in Donation • Unlikely to allow donation, body cremated, due to belief in reincarnation, desire for body to be intact

15. Asians - Hmong • Values in Death and Dying • Amulets need to remain in place, Shaman rituals may be performed, after death specific rituals performed to help send person’s spirit to heaven. • Belief in Donation • Traditionally will not donate because they believe one of three spirits will remains with body, therefore the body needs to remain whole. Christian Hmong believe body and soul are separate and may consent.

16. Asians - Korean • Values in Death and Dying • Mourning and crying may appear over-dramatized to outsider, chanting, incense burning, praying, etc. may be involved. Family will want to spend time with patient after death and may request to cleanse body. Cremation not common. • Belief in Donation • Donation usually considered negatively. Associated with tampering of body/soul/spirit.

17. Hispanic • Values in Death and Dying • Columbians – may be surrounded by all family members except small children, catholic prayer common, may ask for priest, may cry uncontrollably and loudly, women may be hysterical • Central Americans – Assure privacy and quiet for sacrament of sick, candles may be used, family members prepare body for burial, death considered a spiritual event • Belief in Donation • Columbians – may consent to donation • Central Americans – donation acceptable if body treated with respect

18. Be Aware “Unspoken assumptions regarding meaning of health, illness, and death may affect communication regarding donation.”Dr. Hawryluck – Presentation: “Cultural Consideration in Donation”

19. Practical Tips to Enhance Cultural Awareness

20. Risk of Cultural Imposition “The nurse must examine his/her biases and prejudices toward other cultures as well as explore his/her own cultural background. Without becoming aware of the influence of one’s own cultural values, a risk exists for the nurse to engage in cultural imposition”. (Campinha-Bacote, 1996)

21. Tips - Reflections Understand yourself: • What is your culture? Your beliefs? • Have your culture and beliefs been influenced by your family? Have they evolved? • If you have changed your perspectives, what led you to change your perspectives? Reflect. Know yourself.

22. Motives • Understand your motives • Concerns for the family • Concerns for the recipient • Turning a negative situation around to be positive

23. Professional Empowerment • Developed your own interpersonal skills • Utilize your strengths • Focus on the family • Make the Time • Take care of their needs • Pick-up on cues • Be sensible, sensitive and adapt

24. Cultural-Sensitive Communication • “I know different people have very different ways of understanding illness…..please help me understand how you see thing.” (Hallenbeck 2008) • Explanatory model by Kleinman may be helpful in communicating with families/patients.

25. Basic Questions = Clear Answers Explanatory Model – 8 Questions, by Arthur Kleinman: • What do you call your illness? What name does it have? • What do you think has caused the illness? • Why and when did it start? • What do you think the illness does? How does it work? • How severe is it? How long do you think you will have it?

26. Basic Questions = Clear Answers (cont.) • What kind of treatment do you think the patient should receive? What are the most important results you hope she receives from this treatment? • What are the chief problems the illness has caused? • What do you fear most about the illness?

27. Cultural-Communication Tips • Learn and use a few phrases of greeting and introduction in the patient’s native language – conveys: • Respect • Demonstrates your willingness to learn about their culture • Avoid saying “you must….”, use, e.g., “some people in this situation would….”

28. Listen Reading facial expressions Communicate Assess their knowledge Explain process of death Clarify Strategic plan Next steps Be prepared Implementation phase Evaluation phase Multicultural Sensitivity

29. Cultural Issues • Identify the Decision Maker • Give the family what they need and want • Do not project your own personal feelings • Assess their readiness – let the family guide the conversation

30. Tips - Practicalities • Do not assume you know the culture • Seek to understand – Don’t be afraid to ASK! • Become a student of the person / the family • Identify what provides value in death to that individual Your culture is not superior.