Cultural Traditions in the END OF LIFE

1. Cultural Traditions in the END OF LIFE Christine M. Estrada, DO, MPH Hospice & Palliative Medicine Medical Director, Hospice INSPIRIS

2. Objectives • To understand how culture affects medical care • To recognize family-centered decision making and surrogate decision making in the cultural context • To learn about end-of-life traditions in African Americans, Asian and Pacific Islanders, Latinos/Latinas, and Native Americans, including: • Beliefs on death and dying • End-of-life care • Burial rituals • The Afterlife • To understand how we can bridge the gap in cultural competency and end-of-life care

3. Hospice ServicesPatient Ethnicity & RaceNational Hospice & Palliative Care Organization, 2009

4. Cultural Medicine

5. Culture and Medical Care • With increasing diversity in the United States, there is the increased risk for cross-cultural misunderstandings surrounding end-of-life care. • Encounters between physicians and patients of dissimilar ethnicities are becoming more common. • Culture fundamentally influences how individuals make meaning out of illness, suffering, and dying, and therefore influences how they make use of medical services at the end of life. Kagawa-Singer & Blackhall, 2001

6. Culture and Medical Care • With regard to end-of-life care, studies have shown cultural differences in: • Truth telling • Life-prolonging technology • Decision-making styles • End-of-life experiences, beliefs, and expectations are linked to cultural values Tellez-Giron, 2007

7. Cultural Misperceptions • Misperceptions caused by lack of cultural sensitivity and skills can lead to unwanted or inappropriate clinical outcomes and poor interaction with patients and their families at the life end journey. • If a family believes that knowing the truth is harmful to the patient, a physician who persists in telling them the “direct” truth may be perceived as cruel, uncaring, and ignorant. The result is mistrust and anger, and may even precipitate the removal of the patient from medical care altogether. Tellez-Giron, 2007

8. “Cultural Negotiation” • The multicultural medical encounter will have different languages, religious beliefs, and ways of understanding the treatment of illness and the experience of suffering and dying. • Styles of communication and beliefs about the role of physician, patient, and family can also vary, and usually against the backdrop of health care inequities. • The clinical encounter often requires a negotiation between the cultures of the clinician and the patient/family unit to reach mutually acceptable goals. • In the end, addressing and respecting cultural differences will likely increase trust, leading to better clinical outcomes and more satisfactory care. Kagawa-Singer & Blackhall, 2001

9. Family-Centered Decision Making • Blackhall et al (1995) concluded with their survey study that Korean-Americans and Mexican-American subjects were more likely to hold a family-centered model of medical decision making rather than the patient autonomy model favored by most of the African-American and European-American subjects. • This finding suggests that physicians should ask their patients if they wish to receive information and make decisions or if they prefer that their families handle such matters.

10. Family-Centered Decision Making • Kwak & Haley (2005) found that non-white racial or ethnic groups generally lacked knowledge of advanced directives and were less likely than Whites to support advanced directives. • African American were consistently found to prefer the use of life support, while Asians and Hispanics were more likely to prefer family-centered decision making than other racial or ethnic groups.

11. Surrogate Decision Making • One qualitative study showed that the experience of burden of end-of-life decision making was similar in African American, Caucasian, and Hispanic surrogates (Braun et al, 2007). • They concluded that, regardless of race or ethnicity, surrogates for serious ill patients appeared to experience increased significant, multidimensional burdens of decision making under conditions of uncertainty about a patient’s preferences.

12. Cultural traditionsin the end of life

13. AFRICAN AMERICAN

14. African AmericanApproach to Terminal Illness • West & Levi (2004) found that African Americans’ historical distrust of the healthcare system and lack of accessibility reflect perceptions of end-of-life care. • The withholding of life-prolonging treatment, the removal of nutritional support, and the possibility of limited or no resuscitative efforts are seen as another attempt to limit access to healthcare. • Advance care planning is also regarded with distrust and suspicion that care will be diminished in some way. • African Americans prefer the use of life-sustaining treatments at the end of life (Mitchell & Mitchell, 2009).

15. African AmericanApproach to Terminal Illness(continued) • Providers should communicate with the eldest family member. • Public displays of emotion should be expected. • Families frequently care for dying elders at home. Lipson J et al, 1996

16. African AmericanDeath & Burial • Some believe that a death in the home brings the family bad luck. • Families often want the health care team to clean and prepare a loved one’s body. • Some may consider organ donation taboo but may agree to an autopsy. • Cremations are often seen as taboo because of the sanctity of the body and spirit. • Funeral services are sometimes called “home-goings” to show that the deceased is going to a better place. Lipson J, 1996

17. Black Spirituals: Words of Hope “Precious Lord, take my hand, lead me on, let me stand, I am tired, I am weak, I am worn. Through the storms, through the night, lead me on to the light, take my hand precious Lord, and lead me on” (Unichappell Music, 1938).

18. Asian & Pacific islander

19. Asian & Pacific IslanderApproach to Terminal Illness • Kalish & Reynolds (1981) found that members of the Japanese community in LA insisted on maintaining control over communication. • However, even when a loved one was dying and in distress, there was great restraint in communicating the situation to health care providers. • This resistance is influenced by another attitude found amongst many Asian cultures: the belief that talking about bad things usually created them.

20. Asian & Pacific IslanderApproach to Terminal Illness(continued) • It also shows what several studies demonstrated among Japanese Americans, Cambodian Americans, and Chinese Canadians that family members may prefer that dying persons not be told that they are dying (Thomas, 2001). • Many Asian cultures are patriarchal and hierarchal; there is usually one specific person, usually the eldest male or at least an older male in the family who is expected to make health care decisions on behalf of family members

21. Asian & Pacific Islander Approach to Terminal Illness(continued) • Older Korean adults and caregivers both expressed a lack of knowledge about advanced care planning and hospice and agreed that the family would make the final decision about end-of-life care (Kwak & Salmon, 2007). • Thai caregivers in the United States describe care giving as a willing burden and an unavoidable duty, attitudes which are clearly influenced by Buddhist beliefs (Limpanichkul Y & Magilvy K, 2004). • A family may prefer that the patient not be told of terminal illness or imminent death, or may prefer to tell the patient themselves (Lipson, 1996).

22. Chinese AmericanBeliefs on Death & Dying • Some believe that a death in the home brings the family bad luck. • Others believe that the patient’s spirit will get lost if death occurs in the hospital. • Family members make use of special amulets or cloths. • Some families prefer to bathe the patient themselves. • They may believe that the body should be kept intact; organ donation and autopsy are uncommon . Lipson et al, 1996

23. Filipino AmericanBeliefs on Death & Dying • Providers should communicate with the head of the family, out of the patient’s presence. • Public displays of emotion may be expected. • Terminally ill patients may prefer to die at home. • If the family is Catholic, they may ask that a priest perform the “sacrament of the sick” and may use religious objects (such as rosary beads) and prayer. • Family members may want to wash the body and are likely to want time for all family members to say goodbye. • The family may not permit donation or autopsy. Lipson J, 1996

24. LATINO/LATINA

25. Latino/LatinaApproach to Terminal Illness • Most important decisions are made by consensus rather than individually. • Extended families care for loved ones who are ill, sharing information and decision making. • In some cases, patients prefer to be given bad news in the presence of their family; in other cases, families prefer that health professionals not inform the patient about the diagnosis and prognosis of terminal illness. Tellez-Giron, 2007; Lipson J, 1996

26. Latino/LatinaApproach to Terminal Illness(continued) • Reluctance to have personal care given by anyone other than an assigned family member. • Life-sustaining measures are less acceptable. • In the majority of the cases, the head of the household, usually a man, will make the decisions. • With older adults, the eldest child is usually appointed to assist with decision-making, or family consensus in a case of an undefined hierarchy. Tellez-Giron, 2007

27. Latino/LatinaBeliefs on Death & Dying • Most Latinos wish to die at home in the company of all their family. • Death is not an end but a continuum of life. • The concept of time is a very personal one, “I will decide when I die”. • The majority expects it to happen at an advanced age, and therefore, planning for death may not be started until the very late stages of illness, if at all. • Beliefs around planning, “If you planned it then it would happen”. • Therefore, Latinos are less likely to have advanced directives than other racial groups. Tellez-Giron, 2007

28. Latino/Latina AmericanBeliefs on Death & Dying(continued) • Dying in a hospital may not be desirable, some believe that the patient’s spirit will get lost there • Special amulets, religious objects, such as rosary beads, and prayer are used Lipson J, 1996

29. Latino/LatinaSpiritual Beliefs • Latinos have a strong belief in God. • Religious faith (most are Catholic) plays an important role in understanding health and disease, and it is a key source for the acceptance of dying and the grieving process. • In many cases, religious faith may become stronger when a family member faces a terminal illness. • Patients and families turn to God for hope and comfort believing whatever happens will be meaningful. Tellez-Giron, 2007

30. Latino/LatinaTraditional Practices • Group prayer • Religious mass offerings: masses are dedicated to God or a specific Saint to ask for health and well being • Cleansings: traditional practices conducted by “curanderos”, or traditional healers, to “clean” the body and the spirit from disease and/or bad spirits or spells using praying, various plants, animals, and eggs • “Mandas”: saint’s offerings (people offer material things, praying, actions requiring a sacrifice, to a specific saint in exchange for health, favors, and/or miracles Tellez-Giron, 2007

31. Latino/LatinaBurial Rites • Relatives may help with care of the body, and are likely to want time to say goodbye. • Organ donation and autopsy are uncommon. • Family would like the body to be returned “home”. • Because of religious and cultural beliefs, the majority elect burial versus cremation. • There are legal and economic aspects of dying since transporting the body back to the country of origin can be quite costly and complicated. Lipson J, 1996; Tellez-Giron, 2007

32. Native American

33. Native AmericanSpiritual Beliefs • Belief in a Supreme Creator • The “earthly plain” is a world of learning experiences or a journey. • Some tribes believe in two souls: one that dies when the body dies and one that may wander on when the spirit dies. • Various death customs and beliefs gave them the means to cope with the dying experience. Encyclopedia of Death & Dying

34. Native AmericanThe Spirit World • The Spirit World is a place where one is met by ancestors who have passed before. • This world is one of love and beauty and not to be feared. • Those who have a near-death experience state it was a difficult choice to make, whether to remain in the spirit world or to journey back to the earthly plain. • Some have chosen to return to their human forms; others wish to remain in the spiritual sense of being.

35. Native AmericanThe Spirit World(continued) • The spirit chooses the outer covering or vessel while on the earthly journey. • When dying, the “outer shell” deteriorates but the spirit lives on. • Patricia Turner-Weeden described the life end transition to be a time of peace and understanding -- a time to communicate, if at all possible; to settle differences, to make peace with ourselves and others. • The next step would be through the "Big Open Door" into the spirit world, to greet the Creator and all ancestors.

36. Native American Burial Rites • Rites among Native Americans focused on aiding the deceased in their afterlife. • Some tribes left food and possessions of the dead person in or near the gravesite. • Among many tribes, mourners, especially widows, cut their hair. • Some Native Americans discarded personal ornaments or blacked their faces to honor the dead; others gashed their arms and legs to express their grief.

37. An Indian’s PrayerTom Whitecloud II, MD - Chippewa 1914-1972Founding Member, Association of American Indian Physicians O Father Whose voice I hear in the winds and Whose breath gives life to the world, Hear me. I am a man before you, one of your many children. I am small and weak. I need your strength and wisdom. Let me walk in beauty and Make my eyes ever behold the red and purple sunsets.

38. Make my hands respect the things you have made, My ears sharp to hear your voice. Make me wise so that I may know the things You have taught my people— The lessons you have hidden in every leaf and rock. I seek strength, Father, Not to be superior to my brothers, But to be able to fight my worst enemy, Myself. Make me ever ready to come to you with clean hands and a straight eye, so that When life fades as the fading sunset, My spirit may come to you without shame.

39. Cultural Competency and end-of-life care Bridging the Gap

40. Conclusions • The differences in end-of-life decision making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. • We must learn the basic concepts of the various cultures and keep an open communication channel. • We should explore our patients’ beliefs and values, reflect our own beliefs and values, and if possible, compromise to try to reach and best serve all cultures in the end of life.

41. Conclusions(continued) • We must get to know the individual as well as the unique cultural influences, which will help us overcome barriers that impact end-of-life care. • We should ask the patients if they wish to receive information and make decisions or if they prefer that their families handle such matters on their behalf. • We should identify and be especially attentive to strategies used by surrogates, which may vary by race/ethnicity, to reduce the uncertainty about a patient’s preferences and thus the burden of surrogate decision making to assist them in this difficult process.

42. Open the Door • Do not make assumptions • Be sensitive and respectful • Provide a “safe” environment • Create care plans that include culturally appropriate approaches and personal care

43. References • Anderson A. African religions. The Encyclopedia of Death and Dying. Retrieved online on 8/01/10 at http://www.deathreference.com/A-Bi/African-Religions.html • Blackhall LJ , Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. JAMA. 1995;274:820-825. • Braun UK, Beyth RJ, Ford ME & McCullough LB. Voices of African American, Causasian and Hispanic surrogrates on the burdens of end-of-life decision making. Journal of General Internal Medicine. 2007;23(3),267-274. • Hanson HF. Islam. The Encyclopedia of Death and Dying. Retrieved online on 8/01/10 at http://www.deathreference.com/Ho-Ka/Islam.html • Heyman JC & Gutheil IA. Older Latinos’ attitudes toward and comfort with end-of-life planning. Health & Social Work. 2010;35(1):17-26.

44. References • Mitchell BL & Mitchell LC. Review of the literature on cultural competence and end-of-life treatment decisions: the role of the hospitalist. Journal of the National Medical Association. 2009;101(9):920-926. • Nordin KD. Native American religion. The Encyclopedia of Death and Dying. Retrieved online on 8/01/10 at http://www.deathreference.com/Me-Nu/Native-American-Religion.htmlTellez • Tellez-Giron P. Providing culturally sensitive end-of-Life care for the Latino/a community. Wisconsin Medical Journal. 2007;106(7):402-406. • Turner-Weeden P. Death and dying from a Native-American perspective. The Hospice Journal. 1995;10(2):11-13. • West SK & Levi L. Culturally appropriate end-of-life care for the Black American. Home Healthcare Nurse. 2004;22(3):164-168.

45. References • Kagawa-Singer, M & Blackhall, LJ. Negotiating cross-cultural issues at the end of life: “You got to go where he lives”. JAMA. 2001;286(23):2993-3001. • Kalish RA & Reynolds DK. Death and ethnicity: a psychocultural study. Baywood Publishing Company, Inc.: Amityville, NY. 1981. • Kwak J & Haley W. Current research findings on end-of-life decision making among racially or ethnically diverse groups. The Gerontologist. 2005;45(5):634-641. • Kwak J & Salmon JR. Attitudes and preferences of Korean-American older adults and caregivers on end-of-life care. Journal of the American Geriatrics Society. 2007;55(11):1867-1872. • Limpanichkul Y & Magilvy K. Managing caregiving at home: Thai caregivers living in the United States. Journal of Cultural Diversity. 2004;11(1):18-24. • Lipson J. Culturally competent nursing care. Culture and Nursing Care: A Pocket Guide. UCSF Nursing Press, San Francisco. 1996;1-6.