"Palliative Care Is the Only Medical Field That I Feel Like I'm Treated As a Person, Not As a Black Person"

A Mixed-Methods Study of Minoritized Patient Experiences with Palliative Care

Published in: Journal of Palliative Medicine (2022). doi: 10.1089/jpm.2022.0237

Posted on RAND.org on October 24, 2022

by Julia Bandini, Lucy B. Schulson, Claude Messan Setodji, Jhacova Williams, Katherine Ast, Sangeeta C. Ahluwalia

Background

Racial and ethnic disparities are well-documented in health care but generally understudied in palliative care.

Objective

The goal of this mixed-methods study was to examine differences in patient experiences by race/ethnicity in palliative care and to qualitatively explore minoritized patient experiences with care for a serious illness. The data for this study were collected as part of a larger national effort to develop quality measures for outpatient palliative care.

Setting/Subjects

Patients receiving outpatient palliative care (n = 153 Black patients and 2,215 White patients) from 44 palliative care programs across the United States completed the survey; 14 patients and family caregivers who identified as racial/ethnic minorities participated in an in-depth qualitative interview.

Measurements

We measured patients' experiences of (1) feeling heard and understood by their palliative care provider and team and (2) receiving desired help for pain using items developed from the larger quality measures project. We also conducted in-depth interviews with 14 patients and family caregivers to understand their experiences of palliative or hospice care to provide additional insight and understand nuances around minoritized patient experiences with palliative care.

Results

Survey responses demonstrated that a similar proportion of Black patients and White patients (62.9% vs. 69.3%, p = 0.104) responded "completely true" to feeling heard and understood by their provider and team. Fewer Black patients than White patients felt that their provider understood what was important to them (53.3% vs. 63.9%, p = 0.009). The majority of Black patients and White patients (78.7% vs. 79.1%, p = 0.33) felt that they had received as much help for their pain as they wanted. Interviews with patient and family caregivers revealed positive experiences with palliative care but demonstrated experiences of discrimination in health care before referral to palliative care.

Conclusion

Future work is needed to understand nuances around minoritized patient experiences with palliative care and receiving pain and symptom management.

Research conducted by

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