Understanding and Improving Palliative Care and Care Near the End of Life

Abstract

BACKGROUND: African Americans with serious illnesses receive substandard palliative care (PC) and end-of-life care (EOLC) with a disproportionate number having worse symptom-related suffering, poorer health-related communication and knowledge of advance care planning (ACP) wishes, and increased utilization of hospitals and intensive care units at EOL. Previous research emphasizes the importance of spirituality and the church in African American communities. We are pioneering an innovative partnership between two Baptist African American churches and an interdisciplinary research team with a goal of developing and implementing a community-based, church-centered ACP program. We hypothesize that a church-based approach-which embraces and celebrates religion and spirituality as a means to discuss ACP and EOLC-can improve the quality of EOLC. OBJECTIVE: The aim of the study was to determine parishioner experiences and beliefs about EOLC and their potential desire for a church-based program that would address ACP and EOLC. METHODS: A cross-sectional survey of parishioners at two large black Baptist churches across four weekend services in December 2014 was conducted using a five-question, Likert-scale survey completed on a note card. RESULTS: There were 930 responses submitted. Approximately 70{%} of parishioners care, or have cared, for someone with multiple medical problems and/or who is dying, and a vast majority (97{%}) believed that good EOLC is "important" or "very important." Only 60{%} of respondents noted having spoken with someone who could make decisions for them if they are unable to speak for themselves and that number decreased to 28{%} of respondents between the ages of 65 and 80. A majority (93{%}) would welcome church-provided information about EOLC. CONCLUSIONS: A majority of parishioners care for someone with multiple health problems and believe that good EOLC is important. However, significantly less had designated a surrogate decision maker, particularly in parishioners over the age of 65. Respondents would welcome a church-based program focused on improving EOLC.