Experiences and Attitudes about End of Life Care Among African American Parishioners: A Cross Sectional Survey

According to the U. S. Census Bureau¹, the number of individuals 65 and older will reach approximately 92 million by the year 2060, an increase of almost 46%.  There is a greater need for palliative care and hospice services, particularly as chronic illnesses may become terminal ones that warrant specialized end of life care.  Of particular concern is the rate of minority population growth and the end of life care needs of the elderly in this population.  Multiple research publications document disparities in end of life care amongst the aging^2,3,4.  It is projected that the elder minority population growth will exceed the Non-Hispanic White population by 101% with increases projected to be 202% amongst Hispanics, 114% amongst African Americans, and 145% for American Indians and Asians and Pacific Islanders¹.  Across literature it is well documented that ethnic disparities exists in quality, access, and clinical outcomes in palliative care^{5, 6, 7, 8}.  This central theme of differences in end of life care tends to exists between Black and White populations with little information about interventions to ameliorate differences.  Health promotion initiatives, established through partnerships with faith-based programs and hospitals lead to the successful implementation of Healthy People 2010 objectives to improve health care outcomes and quality of life by engaging and educating populations that would otherwise not be assessable. Although literature reports acceptance of faith based coalitions for health education, would Black parishioners find value in church based approaches to education about end of life? Methods: Researchers conducted an interest survey at two Baptist Protestant churches with 99% Black congregations.  The research team developed a five question survey to assess parishioner experiences with, and desire for church-based education concerning, end-of-life care. After a description of the study, researcher encouraged parishioners to consider completing the brief survey.  Completed surveys were returned to the ushers at the completion of the church service but prior to parishioners leaving the pews.  Results:  Statistics for 930 parishioner responses indicated 70% of respondent parishioners care, or have cared, for someone who either has multiple medical problems and/or who is dying, and 97% also believe that good end-of-life care is “important” or “very important”.  Moreover, 93% would welcome church-provided information about end-of-life care. The majority of respondents (77%) were above age 50 and thus, represents a group likely to benefit from proactive advance care planning.  A fair amount of respondents have spoken with someone that could make decisions for them if they are unable to speak for themselves; within age groups  51-65 (60%) and age 65 (28%).  

Discussion: This data emphasizes that our surveyed Black parishioners value EOL care and would welcome a church based intervention.  Though data indicating many respondents have talked to someone that will speak for them if they are unable to speak for themselves, there is a likelihood that a written record of these wishes does not exist.   Based on our data, a church-based health promotion intervention to improve end-of-life care among parishioners is welcomed and palliative social workers are proven to be instrumental in this area.