1. Diversity and End of Life
Care
Terri Hanlon M.D.
Medical Director
Solari Hospice

2. Objectives
 To meet the needs of an increasing culturally diverse
population we need to broaden the criteria in defining
“a good death”
 Basic concepts of culturally effective EOL care
 Cultural sensitivity
 Cultural competence, knowledge and technical skills
 Culture of medicine
 Avoidance of stereotypes
 Cross-cultural palliative care
 Grief and bereavement

3. Cultural Competence
 Attitudinal Issues
 Establishing trust
 Negative attitudes
 Technical Issues
 Communication
 Language barriers
 Social gestures
 Caring for specific populations
 Conflicting values

4. Culture of Medicine
 Assuming the authority of science
 Death as a medical event
 Values held by medicine
 Individual autonomy
 Disclosure
 Informed consent
 Medical futility

5. Avoidance of
Stereotyping
 Magnitude of cultural diversity impossible to master
 Cultural beliefs are not static and unchanging
 Wide variation within generation of a particular group
 Intragroup variations due to socioeconomic positions and
education
 Culture and cultural beliefs difficult to communicate
 Guidelines useful for understanding but do not rigidly apply to
everyone
 Assess individual for relevance of specific cultural values, beliefs
and practices

6. Cross-Cultural Palliative
Care
 Barriers to symptom control may exist when the role of
culture in EOL is not recognized
 Pain Control
 Diet and Nutrition
 Biological Variation
 Decision Making
 Distress (psychosocial and spiritual)
 Bereavement

7. Demographics-USA
 Cultural diversity is increasing in the five panethnic
groups, White, Black, Asian/Pacific Islander and
American Indian
 By 2030 the Hispanic and Asian/P.I. group will double
from that of 1998
 Immigrants and their children will account for one half
of U.S. growth
 By 2050 50% of Americans will claim a relationship to
a minority ethnic group

8. Demographics-Nevada
 Las Vegas was America’s fastest growing city from
1960-2000 with 2.5 million in the metro area today
 Racial Distributions
 65% White American
 20% Hispanic or Latino
 7.1% African American
 6-10% Asian
 2% American Indian, Pacific Islanders

9. Ethnicity and Hospice
 Retrospective study 38,519 CA medicaid/medicare pts ‘96-
06
 66.9% female
 Mean age 78.9
 61.1% white
 14.8% Asian/P.I.
 14.3% Latino
 9.4% Black
 Whites and Latinos more likely to use hospice than Asians
and Blacks
 Blacks and Latinos more likely to die at home

10. Hispanic
 80-90% Roman Catholic
 Ethnic subgroups: Mexican, Cuban, Puerto Rican,
Central American, Dominican, Latin American
 Language:
 Majority are bilingual, Spanish-varied dialect and syntax
 Need to assess reading skills
 Translator-same gender, non-familial
 Do not use Spanish word “hospicio” – infirmary setting
 Use Usted form

11. Hispanic
 Keys to Relationship, Establishing Trust
 Respeto-address adults by title and family name
 Personalismo-establishing a professional relationship
 Simpatia-shaking hands, showing interest
 May avoid eye contact
 Silence may represent lack of agreement
 Ask patient “what do they believe is the cause of the
complaint?”

12. Hispanic
 La Familia
 Extended family
 Patriarchal (mothers still have great deal of influence)
 Information- family spokesperson, oldest son or dtr
 Decision maker-head of household, father or eldest male
 Important issue often require whole family
 Often difficult for family to turn over patients care to
professionals
 Believe in withholding truth of illness to family member
 Females are primary caregivers
 Women defer to their husbands

13. Hispanic
 Health Concerns
 Variable—depending on level of education,
socioeconomic status, generation and time in US
 Higher incidence of alcoholism and drug abuse
 NIDDM
 TB
 Illness = social crisis
 Fatalism—may believe serious illness is beyond tx

14. Hispanic
 Daily Living Issues
 Privacy—information about patient kept within family
 Modesty—especially females
 Bedside commodes and bedpans are unclean and
immodest
 Humoral theory—prohibition of certain foods,
processed foods are bad, no meat on Fri. during Lent

15. Hispanic
 Folklore
 Illness thought to be result of negative or evil forces
and be a punishment
 Illness may be the result of an imbalance
 Yellow flowers = death
 Good health = luck
 Curanderismo
 Sobador
 Partera
 Santero or brujeria
 Botanica

16. Hispanic
 Folk Illnesses
 Ataque
 Bilis
 Diseases of “hot and cold” imbalances
 Mal de ojo
 Susto (soul loss)
 Embrujado

17. Hispanics
 Symptom Management Issues
 Pain—stoic, don’t complain, need to assess by nonverbal
queues. For men, pain is a sign of weakness
 “Silent suffering”—religious
 Moaning (aye, yie, yie)—may be a way to reduce pain
 GI symptoms (N/V. bowels)—only will talk about if asked
 Oxygen—viewed as something serious is wrong if used
 Depression and weakness—common reactions to stress

18. Hispanics
 Rituals of Death and Dying
 Many try to keep prognosis of death from the patient
 Discussions of death discouraged
 Having a priest available for Sacrament of the Sick
 May have religious items and rosaries on the ill
 Death is a spiritual event
 Whole family participates in funeral arrangement
 Dying in a hospital the “spirit” may get lost

19. Hispanics
 Grief Rituals
 Death is an important spiritual event
 Wailing is common and is sign of respect
 Novenas (prayers) said in the 9 days following the burial
 Family members throw handful of dirt in the grave
 Day of Dead—meal taken to cemetery
 Burial happens soon after death, limiting the grieving
period
 Pregnant females prohibited from caring for dying or
attending funeral
 Friends and even acquaintances feel obligated to attend
funeral

20. African American
 Keys to Relationship, Establishing Trust
 Death, violent death familiar
 General lack of trust in health care profession
 Address with title and surname, handshake
 Maintain eye contact
 Will provide personal information if trust and respect
established
 Silence may indicate lack of trust
 Affectionate, hugging and touching

21. African American
 Religious groups—Baptist, Jehovah’s Witness,
Muslim, Protestant
 “Church” is an important institution
 “Faith based communities

22. African American
 Family Issues
 Nuclear, extended, matriarchal, includes friends
 Spokesperson—father or the eldest son
 Father has final decision, but family community is all
involved in important decisions
 Patient maintains independence but attention from
family expected
 “Illness” means that usual roles can’t be fulfilled
 Caregiver wife or oldest daughter
 Elders are a source of wisdom and demand respect

23. African American
 Health Concerns
 Higher incidence of HTN, DM, CAD, AIDs
 Have h/o being “abused as research subjects”
 Skeptical of medical procedures
 Shielding patient from diagnosis
 In terminal illness have family conference with elder or
minister, may help selectively reveal diagnosis
 Avoid medical jargon and illicit feedback for
understanding

24. African American
 Folklore
 Belief in forces of nature, use things like Farmer’s
Almanac, Zodiac Signs, Numbers (3,9)
 Humoral Theory
 High Blood
 Low Blood
 Natural Causes—”God’s plan”
 Cold, dirt, improper diet or conduct
 Unnatural Causes—evil or of the devil
 Worriation, evil influences

25. African American
 Folk Healers
 Grannies, herbalists and physicians
 Spiritual Healers
 Supernatural Healers
 Hougan
 Mambo
 Charms or amulets
 Patients fear ridicule, reluctant to admit using folk
healers

26. African American
 Symptom Management Issues
 Pain—expression open and public
 Dyspnea--may accept oxygen and opioids if explained
 Depression—tiredness
 Fear of addiction—avoid pain medications
 Nausea/vomiting /diarrhea—believe to be caused by
sorcery
 Erythema, cyanosis and jaundice more difficult to
detect

27. African American
 Rituals of Death and Dying
 Reluctant to sign living will or DNR (limit access to
care)
 Consider denial of death a healthy response
 Death in the house may bring “bad luck”
 Want to live as long as possible
 Palliative care—denial of access to care or “giving up”
 Prefer professionals to clean and prepare body
 Importance of laying the dead out properly
 Cremation avoided

28. African American
 Grief Rituals
 Bereaved may get loud and agitated
 Funeral is an “all out ceremony”
 “Sisters” from the church come to help and prepare
meals
 “Say their words”
 Church “nurses”
 “Flower girls”
 Reception line importance of music and choir

29. Asian
 As a group they total more half the worlds population
and are the 4th largest group in Las Vegas
 Ethnic subgroups “East and Southeast Asians”
 Chinese Thai
 Japanese Laotians
 Koreans Hmong
 Vietnamese Cambodians
 “Chinese Influence

30. Asian
 Keys to Relationship and establishing trust
 Most prefer to be addressed by surname
 Very expressive when speaking English, “abrupt”
 Silence and looking away may be sign of respect
 Avoid “yes and no” questions
 Respectful distance
 Awareness of body posture

31. Asian
 Family issues
 Collectivism
 Filial piety
 Hierarchal
 Patriarchal
 Humility
 Achievement
 Elders respected and honored

32. Asian
 Daily Living Issues
 Harmony of yin and yang
 Lactulose intolerant
 Soybeans lessen s/s menopause
 Aversion to raw vegetables
 Family may bring food from home
 Chicken and rice soup
 Beef and eggs not served to ill
 Dietary matters should be discussed with wife or
mother

33. Asian
 Symptom Management Issues
 Pain---watch for nonverbal cues
 Medication dosage---pts may decr. dose or stop meds
 Form and delivery of medication
 Harmony and Face
 Blood equates a “person’s essence”
 Organ donation and autopsy discouraged
 Importance of the head--sacred

34. Asian
 Western physicians-
 Sought for illnesses such as dentistry, fever, allergy,
eyes, MI, CVA, DM, CA and surgery
 May be visited for diagnosis only
 A diagnosis may be rejected if it bears negative
prognosis or if surgery advised
 Traditional Chinese Medicine and Herbalists
 Treat ailments such as asthma, arthritis, bruises,
sprains, lumbago, stomach problems, HTN
 Many Asians don’t disclose use of TCM

35. Asian
 Yin and Yang---illness is an upset in the balance of hot
and cold
 Qi or Chi---flow of blood or energy force through
meridians
 Acupuncture
 Coining and pinching
 Cupping
 Herbal and home remedies

36. Asian
 Utilization of hospice not common
 Reluctant to discuss diagnosis and prognosis
 Family may prefer that patient is not told of terminal
illness
 Discussion of dying
 Like a “death wish
 Dying = Hopelessness
 Pts final day should be calm

37. Asian
 Belief in Afterlife
 Prefer to die at home—spirit might get lost in hosp.
 Family prayers help spirit depart this world
 Body disposal is individual preference
 Body must remain intact and whole for afterlife

38. Asian
 Grief rituals
 After death family may want to stay with deceased for~ 8
hrs
 Family may want to bathe patient and dress with special
clothes or amulets
 Best not to “drop a tear”
 White, yellow and black worn in mourning
 Eldest son makes funeral arrangements
 Objects wrapped in white, money and candy given to
mourners to give to deceased
 7 days time 7 weeks, 49 days relatives gather to help soul
depart to PureLand

39. American Indian
 Genetically similar to Chinese and Koreans
 Culturally they exhibit trait of one of many tribes
 350 Tribes in US
 By law must have at least ¼ Native American ancestry
 Values and beliefs vary from nation to nation
 Religious life has Christian and Tribal Elements

40. American Indian
 Keys to Establish Relationship and Trust
 Respectful distance
 Light touch handshake
 Don’t rush answers
 Speak plainly
 Avoiding eye contact shows respect

41. American Indian
 Language, Dialects, Idioms
 150 indigenous languages
 Prefer adult same gender interpreter
 Use anecdotes and metaphors to discuss a situation
 Tone of voice conveys urgency
 Long pauses are part of conversation

42. American Indian
 Family Issues
 Cultures vary in kinship structure
 The extended family important in EOL decision making
and assist patient in self care and healing
 The disease is felt by the family
 Spokesperson
 Decision maker
 Reluctant to sign documents
 Prognosis discussion varies with tribe

43. American Indian
 Value and Belief System
 Embrace the present
 Maintain positive attitude
 Natural and Unnatural ill health
 Traditional medicine
 Spiritual healers
 Blessing way chants
 Hand trembler or stargazer
 Herbalist
 Ceremonialist, singer

44. American Indian
 Health Concerns
 Shorter life expectancy by 5-6 yrs
 Highest incidence of DMII in the world
 Alcoholism 7x higher incidence
 Cardiac disease, accidents, DM, ESLF, pneumonia,
influenza, homicide, suicide, COPD

45. American Indian
 Symptom Management Issues
 Pain—undertreated
 Dyspnea—the “air is heavy”
 Fatigue—psychosocial origin
 Depression—cultural metaphors. “heart problems” or
“being out of harmony”

46. American Indian
 Rituals of Death and Dying
 Avoid contact with dead and dying
 Name of deceased avoided
 May open window or orient body in certain direction
 Avoid autopsy and cremation
 Return to reservation for burial
 Family prepares, dresses and stays with the body,
which may remain in state for up to 3 days
 Medicine bag and sacred items kept on body
 “turning and flexing body”
 Sweet grass smoke

47. American Indian
 Belief in Afterlife—varies with tribe
 Apache—dead body is an empty shell
 Lakota Sioux—dead body is sacred
 Navajo—do not believe in afterlife

48. American Indian
 Grief Rituals
 Family may hug, touch, sing and stay close to
deceased
 Wailing, shrieking, self-inflicted body damage
 Admonitions, prayer and community meal
 Distribution tobacco
 Deceased persons possessions given away
 Assist in filling in grave
 Wanagi Yuha—dead person’s hair kept in home for a
year of mourning followed by a memorial church
service

49. Overcoming Barriers
 Death Awareness
 Grief Awareness
 Multicultural Awareness
 Self-reflection journal

50. Overcoming Barriers
 Cultural competence
 Curricula of professional schools
 Annual professional meetings
 In-service staff training
 Inclusion and integration of ethnic group in policy
making and hierarchy of health professions
 Research, especially in regards to end of life issues
 Reallocation of funds

51. Cultural Assessment Questions
 Country of birth, if immigrant, how long in this country?
 Ethnic affiliation and strength of identification with group.
 Does pt life in an ethnic community and who forms major support?
 What are primary and secondary languages, speaking and reading
ability?
 Type of religious practice and its’ importance?
 Food preferences and prohibitions?
 Current economic situation?
 What are the health and illness beliefs of the pt?
 What are birth, illness and death customs?
Lipson, J., and Meleis, A. “Culturally appropriate care: The case of immigrants.” Topics in Clinical Nursing, 7 (3): 48-56, 1985.

52. Questions Regarding Cultural
Death Traditions
 What are the prescribed rituals for handling dying, the
dead body, body disposal and loss rituals?
 What are groups beliefs about what happens after death?
 What could be some of their emotional responses to
death?
 What are the gender rules for handling the death?
 Are there any stigmas or fears regarding death
DeSpelder, L. “Developing Cultural Competence.” In Living with , K Doka Griefand J. Davidson, eds., Philadelphia:
Hospice Foundation of America, 1998, pp. 97-106

53. In Closing…
It is our hope that in this venture “we come to
understand the differences with our heads but our
common humanity with our hearts.”
J. Davidson, “Living with Grief”

54. References
 Salimbene, Suzanne, What Language Does Your Patient Hurt In? A Practical
Guide to Culturally Competent Patient Care. Amherst, MA: Diversity
Resources, Inc., 2000, 2005, pp. 105-118; 57-74; 77-92; 57-67.
 Snyder, Lois, Physicians Guide to End-of-Life Care. Philadelphia, PA; ACP-
ASIM, 2001, pp. 35-53.
 Forman, Walter B., Kitzes, Judith A., Anderson, Robert P., Sheehan
Kopchak, Denice. Hospice and Palliative Care Concepts and Practice,
Sudbury, MA; Jones and Bartlett Publishers, 2003, pp. 177-193
 Irish, Donald P., Lundquist, Kathleen F., Nelson Jenkins, Vivian. Ethnic
Variations in Dying, Death and Grief. Philadelphia, PA; Taylor and Francis,
pp. 67-77; 51-65; 101-112
 Webb, George E., Urbansky, Donna. Cultural Diversity in America: How
Different Cultures Approach End of Life Issue. Louisville, KY; Alliance of
Community Hospices and Palliative Care Services 2001, pp. 40-43; 4-7; 18-
20; 8-12

55. References
 D’Avanzo Erickson, Carolyn. Cultural Health Assessment. Newport,
New Hampshire; Mosby Elsevier, 2008, pp. 477-481; 158-164
 Bidar-Sielaff, Shiva. “Cultural Aspects of Pain Management” Fast Facts
AAHPM, 2007 pp. 1-3
 Crossno, Ronald J. “The Impact of Ethnicity and Hospice Use on the
Site of Death” AAHPM/PC-FACS, Sept 2005