African Americans and Hospice Care: A Culture-Centered Exploration of Enrollment Disparities

ABSTRACT

Over the past decade, scholars and practitioners have called for efforts to reduce disparities in the cost and quality of end-of-life care; a key contributor to these disparities is the underuse of hospice care by African American patients. While previous studies have often relied on interviewing minority individuals who may or may not have been terminally ill and of whom few were using hospice care services, this essay draws upon the culture-centered approach to report the findings of a grounded theory analysis of 39 interviews with 26 African American hospice patients (n = 10) and lay caregivers (n = 16). Participants identified several barriers to hospice enrollment and reported how they were able to overcome these barriers by reframing/prioritizing cultural values and practices, creating alternative goals for hospice care, and relying on information obtained outside the formal health system. These findings have implications for understanding hospice experiences, promoting hospice access, and improving end-of-life care.

Funding

Funding from the Center for Hospice, Palliative Care and End-of-Life Studies at the University of South Florida supported this study. The authors also acknowledge Carolyn Ellis, Michael Papa, and Lori Roscoe for their contributions to this article.

Notes

¹ The names of all health care organizations, providers, patients, caregivers, and all other incidental characters are pseudonyms used to protect research participants’ privacy.

² The Short Portable Mental Status Questionnaire (SPMSQ) is a 10-item measure that is used to screen patients for cognitive impairment. It tests orientation, remote and recent memory, practical skills, and mathematical ability (Pfeiffer, 1975). One SPMSQ item, for example, asks patients to “Subtract 3 from 20 and keep subtracting 3 from each new number all the way down.”

Additional information

Funding

Funding from the Center for Hospice, Palliative Care and End-of-Life Studies at the University of South Florida supported this study. The authors also acknowledge Carolyn Ellis, Michael Papa, and Lori Roscoe for their contributions to this article.