Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

Am J Hosp Palliat Care. 2021 Jun;38(6):688-718. doi: 10.1177/1049909120966585. Epub 2020 Dec 8.

Abstract

Objectives: Published research in disparities in advance care planning, palliative, and end-of-life care is limited. However, available data points to significant barriers to palliative and end-of-life care among minority adults. The main objective of this scoping review was to summarize the current published research and literature on disparities in palliative and hospice care and completion of advance care planning and directives among non-Hispanc Blacks.

Methods: The scoping review method was used because currently published research in disparities in palliative and hospice cares as well as advance care planning are limited. Nine electronic databases and websites were searched to identify English-language peer-reviewed publications published within last 20 years. A total of 147 studies that addressed palliative care, hospice care, and advance care planning and included non-Hispanic Blacks were incorporated in this study. The literature review include manuscripts that discuss the intersection of social determinants of health and end-of-life care for non-Hispanic Blacks. We examined the potential role and impact of several factors, including knowledge regarding palliative and hospice care; healthcare literacy; communication with providers and family; perceived or experienced discrimination with healthcare systems; mistrust in healthcare providers; health care coverage, religious-related activities and beliefs on palliative and hospice care utilization and completion of advance directives among non-Hispanic Blacks.

Discussion: Cross-sectional and longitudinal national surveys, as well as local community- and clinic-based data, unequivocally point to major disparities in palliative and hospice care in the United States. Results suggest that national and community-based, multi-faceted, multi-disciplinary, theoretical-based, resourceful, culturally-sensitive interventions are urgently needed. A number of practical investigational interventions are offered. Additionally, we identify several research questions which need to be addressed in future research.

Keywords: advance care planning; advance directives; discrimination; disparity; hospice care; mistrust; non-Hispanic blacks; palliative care; religion and religiosity.

Publication types

  • Review

MeSH terms

  • Adult
  • Advance Care Planning*
  • Black or African American
  • Cross-Sectional Studies
  • Hospice Care*
  • Humans
  • Palliative Care
  • Terminal Care*
  • United States