Module 24 Cultural Dimensions in End-of-Life Care Adapted from:The 2004 PERT Program Pain & Palliative Care Research Department Swedish Medical Center,Seattle, Washington Geriatric Aide Curriculum NC Division of Health Service Regulation

2 Objective: 1. To obtain an understanding about culture and its influence on: A. Caregivers B. Residents and families C. Relationships among team members, residents, and families D. Clinical care at the end of life E. Decision making at the end of life

3 Increasingly, health care providers and clients are from different cultural backgrounds. If trends continue, by 2050, one in two Americans will claim membership in an ethnic minority. U.S. Census Bureau, 2004, "U.S. Interim Projections by Age, Sex, Race, and Hispanic Origin,"

4 Definitions

5 Culture Socially transmitted values, customs, arts, behaviors, and beliefs that guide a person’s world view and decision making. (Purnell & Paulanka, Transcultural Health Care, 2000)

6 Culture... Is universal Dominant & nondominant cultures Includes religious cultures & subcultures (Purnell & Paulanka, Transcultural Health Care, 2000)

7 World View Includes: The purpose of human life The nature of the universe and humans’ relationship to it Relationship to nature Social relationships

8 World View Includes: (continued) Moral and ethical thinking Beliefs about magic/religion Aesthetics (nature of beauty and art)

9 Race Inherited physical traits that characterize distinct groups of humans Racism: belief that race is the key factor in determining human qualities and abilities, and that one race is superior to another

10 Ethnicity Belonging to a group that is characterized by: Literature, art, music Language Social customs Dietary practices Religion Sense of belonging Employment patterns Physical community

Assimilation The process of assuming the values and behaviors of the dominant culture

Acculturation The process of learning the values of the dominant culture without adopting them

13 Stereotype vs generalization A stereotype is an ending point where no attempt is made to find out if what we think about a person is true. A generalization is a beginning point where more information is sought to find out if what we think about a person is true. Galanti, Caring for Patients from Different Cultures, 1997

14 (Purnell & Paulanka, Transcultural Health Care, 2003) Ethnocentrism Universal tendency of humans to think that their ways of thinking, acting, and believing are the only right, proper, or natural ways

CultureandCare at the End-of-Life

16 How has culture influenced your care of residents who are dying?

17 How Culture Influences Death Affects how people view death, and their distress or peace with death Affects social customs, for example, care of the body and mourning rituals

18 How Culture Influences Death (continued) Affects how people talk about death Can strain or enhance relationships between care providers and residents/families Affects decision making

19 End-of-Life Decisions Palliative vs. Curative Therapies Use of Pain Medications Advance Directives Initiation/Withdrawal of Life-sustaining Therapies

20 Truth-telling Patient Autonomy Personal Control Cultural Values of the American Health Care System

21 Examples of Cultural Differences Interdependence, especially among family members, rather than a focus on individual autonomy Respectful communication Trust, rather than control

22 Cultural Assessment at the End of Life (Adapted from Koenig & Gates-Williams, 1995) Use of Language Decision Making Religious Beliefs Death Rituals Hope Fate or Control

23 Cultural Assessment at the End of Life (continued) Gender Age Power Historical or Political Factors Community Resources

24 Mourning Cultures experience grief as a response before a pending death or after a death. Mourning is the process through which the grief is expressed. Mourning represents culturally accepted expression of the personal feelings that follow the death of a loved one.

25 Mourning Culturally acceptable expressions during mourning shaving the head, wearing black or white clothing, and grieving for a set amount of time. Another culture may express grief through drinking and dancing with the surviving spouse expected to marry a person with a certain kinship position.

26 Mourning A culture may expect the spouse or close family members of the deceased to mourn for the rest of their lives by performing certain rituals, wearing specific kinds of clothing, being addressed a certain way by others, and the changing of one’s rights and obligations to the community.

27 Mourning Bereaved Balinese may laugh off a death because visual expressions of sorrow are forbidden among the Bali. Being possessed by the spirit of the dead may be considered normal in other cultures.

28 Mourning Other cultures may wail, light candles, cover all mirrors, want to cleanse the body, or call a priest, monk, rabbi, or spiritual advisor.

29 Culturally Sensitive Care: Eye contact Examples Asian and Hispanic cultures may avoid eye contact to show respect. Middle Eastern cultures may avoid eye contact between men and women. Some Native American cultures may avoid eye contact to avoid having souls stolen.

30 Culturally Sensitive Care: Touch examples Middle Eastern cultures and orthodox Jewish religions avoid touch between members of the opposite sex. Asians may not like being touched and physical contact is relatively infrequent in most Asian countries. Most Hispanics, however, will probably feel quite comfortable with hands-on care.

31 Culturally Sensitive Care: General Approaches Knowledge Careful assessment without stereotyping Respect for diverse beliefs and practices Understanding and honoring one’s own values Negotiation

32 Case Studies

33 Summary Culture is universal Culture affects end of life decision making Cultural patterns can increase or decrease vulnerability Culture can be a barrier but also an opportunity

34 “You got to go where he lives” (Kagawa-Singer & Blackhall, JAMA, 2001)

35 THE END