1. Tracy Schroepfer, PhD, MSW University of Wisconsin-Madison School of Social Work

2.  All Things are Related…  Self-Preparation  Practice Strategies  Asking about Cultural Beliefs in Palliative Care  Ethical & Boundary Challenges  Diversity in Preferences at EOL

5. Centered on insuring the individual’s comfort through control of pain, and other physical symptoms

6. Centered on how illness and end-of-life affects an individual's feeling and mood

7. Centered on insuring the quality, not quantity, of an individual’s social relationships and support at end-of-life

8. Spirituality is how a person talks, listens and works together with the Creator or Higher Power or God. It is the meaning of life, prayer, individual beliefs and to honor what is sacred

9. Our culture consists of shared values, traditions, norms, customs, teachings, arts, history, folklore, and institutions Our culture and socialization influence our beliefs about, attitudes toward, and experience with end-of-life

10. Our Challenge How do we as professionals work holistically with individuals from diverse cultures and with perspectives different from our own, and do so sensitively, ethically and with appropriate boundaries?

11. Self-Preparation

12.  Self-knowledge and its impact on practice and decisions  Life experiences that shape our value preferences  Values or beliefs that influence our practice and decisions

13.  Need to be honest with yourself  Recognize you are human  Awareness of threat of paternalistic approach to practice  Potential dissonance between ethics and discretionary judgments

14.  What are your beliefs regarding discussing death and dying with terminally ill clients? Harmful? Helpful? Conflictual?  What role do your cultural beliefs or practices play?

15. Practice Strategies

16.  Walk with the individual - not ahead and not behind  Be open to his/her emotions & thoughts  Ask open-ended questions  What does his/her nonverbal communication say?  Encourage questions and voicing of concerns Approach

17.  Use of different phrases: pay attention and use: ~ Cross the river ~ Walk on ~ Passing to the other side ~ Traveling to the spirit world

18. If patient and/or family members do not speak English, then use a medical interpreter such that a family member does not need to serve as the interpreter; it could prove embarrassing or upsetting to translate personal information.

19. Ask before touching (i.e. holding a hand or giving a hug) as touch may not be appropriate in some cultures.

20. Pay attention to and honor the type of eye contact that the client uses.

22.  Language differences?  Open discussions on dying?  Who are the decision makers?  Preferences regarding place of death?  How client & family think about illness?

23.  “Some people want to know everything about their medical condition, and others do not. How much would you like to know? Preference is family involvement:  Would you like me to speak with them alone, or would you like to be present?

24.  Is there anything that would be helpful for me to know about how you and your family view serious illness?  Are there cultural beliefs, practices, or preferences that affect you during times of illness?

25. When open to discussing death:  What concerns do you have about dying?  Are there things that are important to you or your family that I should know about?

26. Communal or Individualistic?  Do you prefer to make medical decisions about tests and treatments yourself, or would you prefer that others in your family or community make them for or with you?

27.  Are there specific practices you would like to have in the hospital or home?  Are there aspects of medical care that you wish to forgo or have withheld because of your cultural beliefs? Is anything discouraged or forbidden?

28. Terminally ill & open to discussing death:  Are there specific practices that are important to you at the time of death or afterwards that we should know about?

29.  Identify resource people from client’s community  Talk with an individual’s family and friends  Be aware of the need for, and availability of, interpreter services

30. Ethical & Boundary Challenges

31.  Culture bound  Less individualistic  More family centered  Preferences about prognosis & disclosure of diagnosis  Talking about dying and death could be harmful  What are the ethical challenges?

32.  Gift giving and accepting  Encountering clients outside the professional relationship  Triangulation  Interrupting patient/client when speaking  Stepping into clients’ physical and emotional space  What are the boundary challenges?

34. Do not assume sameness…

35. There is diversity within diversity within diversity…

36. Diverse: Africa (Ethiopia, Egypt) Caribbean Islands (Haiti, Jamaica)

37. Diverse: Laos, Korea, China, Japan, Vietnam, Thailand, Cambodia

38. Diverse: Central America, Puerto Rico, Mexico, South America, Cuba

39.  Death God’s will; heaven; release  Notification of family crucial; family grieve in private  Traditional 9 days of prayer  Elders responsible for autopsy decisions  Organ donation more acceptable to acculturated or highly educated

40.  Death feared; unnatural  Acculturated Cubans inform about pending death; more traditional Cubans inform male head of family  Public expression of grief – crying and screaming before and after  Autopsies and organ donations uncommon

41. Diverse: Hopi, Navajo, Ojibwe, Mohican, Potawatomi, Ho-Chunk, Iroquois

43.  Cancer affects a person suddenly - fatal  Cancer treatments difficult to endure, cause physical strain, takes emotional toll on individual and loved ones  Cancer may result from a person’s spirit not being well, or a person lacking a connection to his/her spirit

44.  Cancer may be a repayment for something a person has done wrong or be the result of bad medicine inflicted by another  Community generally believes there are cultural solutions to cancer and the most effective way to deal with it is both physically and spiritually

45.  May be reluctant to visit doctor off the reservation, even if sick or suspect cancer due to fear judged complaining or wasting time  Often conditioned to not feel important or astute enough to decide to visit doctor  Many had, or heard about, bad experiences with a doctor, leading to mistrust and avoiding health care

46.  Surgery may interfere with traditional belief that a person should go to the spirit world with his body completely intact  Very important to stay connected to the spirit, which travels under general anesthetic, so more likely to reject surgery if they fear loss of spirit during a medical procedure

47. Cultural belief that life is sacred and now that technology exists to treat cancer through surgery and medication, community members may take advantage in order to save their life

48. This work is dedicated to the terminally ill elders who sacrificed precious hours of their remaining days to share their dying experiences and to teach me about dying. After all...how can we, the living, teach others about dying? We cannot. The dying are our teachers and we are the pupils. I am deeply grateful to have been their pupil.