Negotiating Through to the End: Exploring African American use of hospice services
Wicher, Camille P.
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Problem: Hospice has emerged as an optimal model of end of life care. It would appear that not all racial/ethnic subgroups of the US population access this care equally. African Americans do not utilize hospice to the same degree as non-Hispanic White Americans. According to the literature, African Americans may prefer aggressive life sustaining treatment over hospice services to a significantly greater degree than non-Hispanic Whites, even if that care is futile. There is some evidence that African Americans do not want aggressive end-of-life care when that care is futile. They want care that incorporates their spiritual needs, family-centered decisions, and, if possible, the ability to die at home. The hospice philosophy is consistent with provision of such care in a home or facility environment and may provide an alternative to aggressive end-of-life care. Yet, even after adjusting for knowledge and access, African Americans do not use these services to the same extent as Non-Hispanic Whites. The reasons for this are unclear. Objective: The purpose of this study was to explore and describe theoretically the process of hospice utilization from the perspective of African Americans. Specific Aims: 1) To describe the facilitators and barriers to hospice utilization; 2) To explore contextual factors surrounding hospice utilization, 3) To understand how the use of hospice services might be influenced by the historical legacy of mistrust and perceived discrimination by the medical system and 4) describe the consequences/outcomes of the use of hospice services. Research Design/Methods: A grounded theory approach as described by Charmaz (2006) was used to guide data collection and analysis. Findings: The process Negotiating Through to the End of Life was identified and included five phases: recognizing the end is near, doing things our way, being wary, acquiring accurate information and embracing hospice at the end of life. Lack of accurate information about the nature of and access to hospice care was the biggest barrier as African Americans negotiate their way through the process of end of life care decisions. Medical mistrust, although present, was not a major deterrent to using hospice, once African Americans had acquired accurate information about the services hospice provided. Potential Significance: Healthcare practitioners and policy makers need to know when and how to impart culturally relevant information regarding hospice services. Accurate and timely information is important to enable people of every racial and ethnic subgroup to make end of life care decisions. Communication, culturally integrated into health care, needs to be explored at a practitioner and national policy level. Nurses can play a role in imparting information to African American patients and families. Finally, providing culturally sensitive end of life care may improve the quality of life for African Americans who are at that stage in life.