"Hospice was Created by the KKK"-Black Americans' Perspectives on Hospice Care.

Abstract

Background: Misperceptions of hospice persist in communities of color. This study explored what Black Americans understand about and how they describe hospice care. The goal was to determine if older Black Americans can accurately describe hospice and to explore potential barriers and facilitators to hospice enrollment.

Methods: A content analysis of qualitative data collected in a larger mixed-methods study. Participants responded to the written prompt, "In your own words describe hospice care" with no further instructions. Recruitment occurred from community settings between May 2019 to March 2020. We recruited 144 participants who were at least 65 years old and self-identified as Black or African American. The written narratives were analyzed to determine how accurately participants described: (1) hospice care and eligibility, (2) location of services, (3) services provided, and (4) goals of care.

Results: Participant ages ranged from 65 to 97 years (M = 74.62, SD = 6.94). Participants were predominately female (81%) and widowed (33%). Participants accurately described hospice care and eligibility (80%), goals of hospice (89%), and services hospice provides (83%). Only 39% of participants correctly identified locations of hospice services. Additionally, some participants (8%) reported certain myths and conspiracies pertaining to hospice.

Conclusions: This study found that older Black Americans accurately describe hospice care and eligibility, goals of care, and the services provided by hospice. However, most were unable to accurately describe the location of hospice services and a few reported myths and conspiracies. The study highlights areas to improve communication about hospice which may reduce some of the barriers to hospice enrollment in Black Americans.

Trial registration: ClinicalTrials.gov Identifier: NCT04458090.