End-of-life Decision-Making and the Role of the Nephrology Nurse

1. End-of-life Decision-Making and the Role of the Nephrology Nurse Module 3 Cultural Diversity Different Cultures,Different Solutions

2. Introduction • This module is the third in a series to help nurses understand the cultural influences that they can have on end-life-care. • First module: Advanced Care Planning • Second module: Ethical/Legal Issues in End-of-Life Care

3. Objectives • Define terms pertinent to the discussion of cultural influences on end of life care. • Examine one's own cultural profile and this profile’s influence on attitudes about end-of-life care. • Describe the cultural make up of your current work environment (including staff and patients) and how it impacts the care provided.

4. Objectives • Identify communication skills to enhance culturally sensitive interactions between care givers, patients, and families. • Identify cultural responses to illness, death, and grief.

5. Concepts Helpful in Understanding Cultural Influences Values Belief Culture Ethnicity

6. Values • Values are defined as principles and standards that have meaning and worth to an individual, family, group, or community. • What are some values that you have as an individual? That you share with a group? • Examples may include honesty, truthfulness, faithfulness. • Purnell and Paulanka-Transcultural Health Care, 2003

7. Belief Something that is accepted as true • Examples: • Spiritual beliefs • The world is round Purnell and Paulanka

8. Culture The totality of socially transmitted behavioral patterns, arts, beliefs, values, customs, life ways……and all products of human work and thought……. characteristic of a population of people that guide their world view and decision making. Purnell and Paulanka

9. Ethnicity A way of socially grouping persons on the basis of historical or territorial identity or by shared cultural patterns. Examples include Hispanic and African Americans. They can be from different areas of the world, but still identify with their ethnic culture. Crawley 2005

10. Cultural Competence A set of attitudes, skills, behaviorsand policies enabling individuals to establish interpersonal and working relationships that supersede cultural differences Price 2005

11. Cultural Competence is…. a Continual Process of learning change and growth.

12. Your Own Cultural Self-Assessment • Important to have an understanding of your own culture – its beliefs and values. • Aspects of your culture may influence how you react to others and how others react to you. • Take a few minutes to do assessment • Also, consider culture of your workplace when completing the assessment

13. Key Elements of Self Assessment • Be aware of your own culture and how it influences your approach to others • Be open….Be humble • Be honest with yourself • Be real in the use of respect and concern

14. Cultural Self-Assessment Tool • Where was I born? • What is my ethnic affiliation and how strong is my ethnic identity? • What do I value? • How do I communicate with others? • What are my health and illness beliefs and practices? • Is religion an important source of comfort and support? • How do I define care? • Do others in my family share my thoughts and feelings about the above answers?

15. Reflection on Self Assessment • Important to understand our own beliefs, values, and culture • Remembering it is the care we provide and the work we do, is not about “us” but about the care we provide to our patients and the work we do with our staff • “Sometimes you may not understand – but you just have to accept” • Our patients need to know that we are with them in providing the care and support they deserve

16. Diversity of U.S. Patient Populations Dialysis Patients: 324,826 in U.S. • White 179,953 55.4% • Black 120,835 37.2% • Native American 4,548 1.4% • Asian 13,643 4.2% • Hispanic 45,476 14.0% USRDS 2005 Annual Report

17. Profile of Patient Population Transplant Patients: 128,131 in U.S. • White 96,995 75.7% • Black 23,320 18.2% • Native American 1,281 1.0% • Asian 5,510 4.3% • Hispanic 14,351 11.2% USRDS 2005 Annual Report

18. What is the patient and staff cultural profile in your work environment? • How do these cultures approach end-of-life and the grieving process? • How do aspects of these cultures impact your care for patients, especially discussions on end-of-life issues, illness, grief and death? • What conflicts do/may occur between persons with different cultural expectations?

19. Cultural Awareness/Cultural Sensitivity • Social Class/Economic Status • Sexual Orientation • Areas of common cultural differences: • conversational style • eye contact • personal space • touch • time orientation

20. Cross-CulturalInterview Questions • “Some people want to know everything about their medical condition, others do not. What is your preference?” • “Do you prefer to make medical decisions about your future tests or treatments yourself or would you prefer that someone else make them for you?”

21. Questions Continued • “Is there anything that would be helpful for me to know about how you or your family views serious illness and treatment?” • “What is worrying you most right now?” • “How can I make you more comfortable?”

22. Examples of Cultural Influence Religious Beliefs • Jehovah Witnesses - no blood transfusions • Christian Scientists - spiritual healing, not medical intervention • Muslims - may choose to face Mecca; discussion about death not usually welcome; stopping medical treatment is against Allah’s will; grief counseling not well accepted

23. Cultural Implications • Jews - everything done to prolong life; dying person not be left alone. • Hindus - death generally accepted philosophically; sacred threads • Buddhists - Buddhist monk consulted for spiritual support; shrine in room; “mindfulness” important

24. Cultural Implications Hispanic/Latino • The family makes decisions and shares in care • Wailing is acceptable and expected • Fear of soul being “lost” in hospital, prefer to die at home • Prayer and folk remedies are common, along with religious medals, rosaries

25. Cultural Implications African-American • Communication with the oldest family member • Open displays of emotion should be expected • Strong sense of family, care for dying person at home • Distrust of the system • Home remedies used

26. Cultural Implications Native American • Number of different tribes, various beliefs • Fearful of expressing their religious beliefs • Family meetings may be helpful • Avoid eye contact and maintain a respectful distance

27. Cultural Implications Chinese American • Families often will not tell the patient their diagnosis of terminal illness or imminent death • Dying at home may be considered bad luck • Often avoid eye contact and may not disclose information that may be private

28. Cultural Implications Filipino American • Communication with head of the family, away from patient • After discussion, may agree in order to be polite and not offend • Patients may prefer to die at home • Religious objects and prayer used

29. Cultural Awareness inEnd-of-Life Decisions • The effect on the family • The grieving process

30. Family Perceptions onEnd-of-Life Care Family members recommendations: • Better communication (44%) • Greater access to physician time (17%) • Better pain management (10%) • JAGS 1997 Hanson, Danis and Garrett

31. Family Perceptions onEnd-of-Life Care • Largest study to date examining family perceptions of EOL care. • Unmet needs: • Emotional Support (50%) • What to expect while patient dying (35%) • Symptom management, pain/dyspnea (24%) • Physician communication (24%) • JAMA January 7, 2004 Teno, et al

32. What Do Patients/Families Want • Physician support of Family Caregivers • Timely and clear communication with patient and caregivers • Support for home care • Information on services if home care is not an option • Empathy-validate common feelings and reassurance of high quality care

33. Cultural Implications in Grieving Process • Determined by complex interaction of religious, philosophical and ethnic groups • How do your attitudes/beliefs affect your delivery of care? • Think about how your own attitudes and beliefs affect your delivery of care to patients of a different culture.

34. Brief Review ofStages of Grief Remember grief is expressed whenever there is a loss…

35. Stages of Grief Stage 1: Notification and Shock • Assess and recognize the loss. • Helps in coping with the initial impact of the loss • Feelings of numbness, denial, isolation, avoidance, difficulty with decision making. • Feelings should decrease and subside as survivor moves to the next stage

36. Stages of Grief - Continued Stage 2: Experience the loss emotionally and cognitively • Process of working through the pain by reacting to, expressing and experiencing the pain of separation/grief. • Confrontation, anger, bargaining, depression

37. Stages of Grief - Continued Stage 3: Reintegration • Reorganize and restructure family systems and relationships, forming new identity after each loss • Survivor may begin to find hope in the future, feel more energetic, participate in social events, acceptance.

38. Effects of Grief • Grief is a roller coaster • Take the time to grieve • Learn from past losses • Do not need to struggle alone

39. And Now What? • Offering Comfort • Rituals and Traditions • Resources • Hospice • Bereavement Counseling • Peer Support Groups • Web sites such as Kidney EOL Coalition (www.kidneyeol.org)

40. What About the Health Care Provider • Resolving our grief • Support • Colleagues and peers • Mentors/Friends/Community Leaders • Employee Assistance Programs • Prayer • Community Resources • “The Culture Tool”

41. Key Learnings • Everyone is unique and draws from their own past experiences • Communication is key • Much work still to be done

42. Closing thoughts.. As a culturally competent professional, I am capable of interacting with people who do NOT live like, look like, talk like, think like, believe like, act like ....me. • National Center for Cultural Competence

43. Closing thoughts… At the end of life, an individualized approach to care with a focus on quality is paramount for any patient, regardless of racial, ethnic or cultural background. Crawley 2005

44. End of Life Prayer When my life is finally measuredIn months, weeks, days, hours,I want to live free of pain,Free of indignity,Free of fear,Fear of loneliness. Give me shelter.Give me your hand.Give me your care. Give me your understanding.Give me your love. Then let me go peacefullyAnd help my family (and friends)To understand. Anonymous prayer found at Hospice House, Williamsburg, VA

45. Resources • Kuczewski, M.G.(2006). Our cultures, our selves: toward an honest dialogue on race and end-of life decisions. The American Journal of Bioethics,6(4), 13-17. • Lipson, J.G., Dibble, S.L., and Minarik, P.A.1996. Culture &Nursing Care: A Pocket Guide. San Francisco: UCSF Nursing Press. • Mazanec, P. and Tyler, M.K.(2003). Cultural considerations in end-of-life care. American Journal of Nursing, 103(3), 50-58. • Searight, H.R., and Gafford, J.(2005). Cultural diversity at the end-of-life: issues and guidelines for family physicians. American Family Physician, 71(3), 515-522. • Zoucha, R.(2000). Keys to culturally sensitive care. American Journal ofNursing,100(2), 24GG-24II.

46. AdditionalResources ANNA Ethics Committee Please contact us with questions or concerns through the ANNA Website Additional Websites: • National Resource Center on Diversity in End-of-Life Care: committed to improving the provision of and access to quality culturally appropriate care for all individuals with terminal illnesses. http://www.nrcd.com/ • Trans-cultural Nursing: Basic Concepts and Case Studies: this site offers information on treating patients and uses real-life examples to illustrate key points. http://www.culturediversity.org/mide.htm • Harborview Medical Center http://ethnomed.org This site offers a cultural profile of numerous African and Asian cultures.