PERT Program: Tip of the Month

PERT Program

Tip of the Month: March 2006

WORKING WITH AFRICAN AMERICAN RESIDENTS AND FAMILIES AT THE END OF LIFE

One of the goals of end-of-life care is to respect and honor a person's culture, values, and beliefs. Unfortunately, there has been little research in this area. Health care providers need to become better acquainted with the values and beliefs of the residents that they care for to provide culturally competent end-of-life care. This is especially important as our society continues to become more diverse. This month's Tip will discuss African American families and their values and traditions. (If you are interested in additional information on culture, terms related to culture, and how to do a cultural assessment, we encourage you to apply to access the PERT Curriculum module on culture and end-of-life care.)

African Americans are the second largest minority group in the United States and comprise 12.7% of the population (US Census Bureau, 2004). They represent a diverse cultural group and are interwoven into a US society where the dominant cultural value structure is Anglo-centric.¹ It is important to consider the history of this population group especially when caring for older adults.

The table below lists cultural values that are common to many African Americans, along with the implications that these values have on the care you provide.

Cultural Value	Practice Implications
History of mistrust, oppression	Less likely to complete advance directives Need to be assured that care will continue to be provided
The important role of spirituality	Connect with local clergy and church Pray with resident Bible available if resident wishes Participate is signing hymns
Family is source of support	Many family members may visit at end of life Keep family informed, designate one person to be family spokesperson Older women are often most valued and respected Arrange for family privacy
Emotions are openly expressed	Family may openly express grief, cry, and pray Acknowledge family grief; offer support Seek out an area where family may gather

The African American culture has evolved within a historical tradition of oppression and accommodation. African Americans have frequently received unequal treatment and inadequate medical care. Disparities in health care outcomes continue today as documented in the Institute of Medicine's report Unequal Treatment.² This, combined with a history of discrimination and abuse, has contributed to a culture of mistrust.

African Americans tend to be suspicious of health care professionals.³ Many African Americans have been denied options throughout their lives, and would question why terminal care would be any different.⁴ African Americans are more likely to want aggressive care and the end of life compared to the white population, and are less likely to complete advance directives. However, health care providers should be aware that there is a wide range of views on this issue. Individuals and families should be asked their opinions without assumptions being made about their beliefs.

Spirituality is central in the lives of many African Americans. Religion and spirituality have a significant influence on elder African Americans' beliefs about dying, death, and care at the end of life. Religion, one component of spirituality, is a vital source of social support. Death is not feared; it is a life transition and sometimes referred to as "homegoing." African American elders tend to pray more, are more likely to be affiliated with a church, and attend church services more often than others. Older adults believe God decides when it is time to die. They want to die with dignity and respect. It is important to older adults to be able to read the Bible and pray.

Churches are the source for transmission of spiritual values within the family and community. African American churches have been found to provide a wide array of services even though they have limited resources. Because churches are a strong source of support, efforts should be made to connect with clergy in local church communities. It is important for clergy to be able to visit residents in long term care settings.

The significance of family is another important cultural value. Families make every effort to visit when someone is sick and or seriously ill. The word spreads quickly in the community when someone is sick. Often, large numbers of family will visit when someone is dying. It is important to have someone who will serve as a family spokesperson to convey information about the resident's condition. Often the oldest female member of the family is the person with the most respect in the family.

Families are very expressive with emotions, and may openly cry and pray or chant. It is important to acknowledge the family's grief and provide support. Let the family know that you recognize this is a difficult time for them. If possible, try to locate an area where family may gather with privacy and without being disruptive to other residents. It may be helpful to the family to pray with them if you are comfortable doing this. You may want to ask the family if they want to have their clergy present.

In summary, value the African American culture by learning more about residents' values and beliefs. Avoid making assumptions about residents' preferences or beliefs based on their culture. It is always appropriate to ask "what would you want done?" and "what is import to you?" Residents will recognize your interest in them and respect your questions.

This month's Tip was written by Sarah A. Wilson, PhD, RN, Associate Professor and Director, Institute for End-of-Life Care Education at Marquette University College of Nursing, Milwaukee, WI. Dr. Wilson also was the lead curriculum consultant for the PERT program.

References

Mouton, C.P., Johnson, M.S., & Cole, D. R. (1995). Ethical considerations with African American elders. Clinics in Geriatric Medicine, 11, 113-129.
Institute of Medicine. (2002). Unequal Treatament: What health care providers need to know about racial and ethnic disparities in healthcare. National Academy Press.
Campinha-Bacote, J. (1998). African Americans. In L. D. Purnell & B. J. Paulanka (Eds.). Transcultural Health Care: A Culturally Competent Approach, 53-75, Philadelphia, PA: F. A. Davis.
Burrs, F.A. (1995). The African American Experience:B breaking barriers to hospices. Hospice Journal 10, 15-18.