Black patients and their families experience worse pain management, ineffective communication from providers, and an outsized burden on family caregivers. The Center to Advance Palliative Care (CAPC) has therefore released the key findings from Health Care for Black Patients with Serious Illness: A Literature Review, the first comprehensive literature review of its kind.

The goal of the literature review is to clearly establish what is known about disparities, barriers, and successful interventions. "Before we can move to equitable access and quality improvements in care, we first need to understand what exists, what has been studied, and what is out there about the experiences of Black patients with serious illness, and their caregivers," said CAPC Director of Health Equity and Special Initiatives, Brittany Chambers, MPH, MCHES.

The review included peer-reviewed journal articles from PubMed, Scopus, and recommendations from the initiative’s steering committee members. Since “serious illness” was the overarching theme, research on various diseases fell within that umbrella, including cancer, heart disease, dementia, end-stage renal disease, and HIV.

The key findings include but are not limited to:

1) Black patients living with serious illness receive poorer quality pain management from their healthcare providers.

2) The non-pain symptom management provided to Black patients living with serious illness is worse than that for White patients.

3) Black patients with serious illness report poor-quality clinician-patient relationships and communication.

4) There are mixed findings on whether racial disparities exist in the utilization of palliative care.

5) There are diverse findings on whether Black patients are less likely to have access to or use hospice services, but several barriers to hospice use have been identified.

6) The needs of, and burden on, Black caregivers affects both the caregiver and their loved ones.

7) There are mixed findings on the perceived satisfaction with, or quality of, healthcare received by Black patients.

8) Compared to other racial groups, Black patients living with serious illness tend to use more high-acuity care.

9) The preference for, and utilization of, life-sustaining treatment when nearing the end of life differs between Black and White patients living with serious illness.

10) Healthcare organizations providing care for people living with serious illness have identified cultural competency training and workforce diversity as areas in need of improvement.

11) Black patients frequently incur higher medical costs during the course of serious illness.

12) Compared to White patients living with serious illness, Black patients are less likely to have advance care planning (ACP) discussions or documents.

13) Social determinants influence quality of life for Black patients living with serious illness and their families.

14) Mistrust of the US healthcare system may influence the decision-making of Black patients with serious illness, and their loved ones.

15) Cultural factors more common in the Black community, may influence healthcare utilization.

16) While studies consistently find religious and spiritual beliefs to be an important factor for many Black patients living with serious illness, there are mixed findings on its influence on end-of-life care.

Focusing on a single patient population allows for culturally responsive outcomes, and the strategies and knowledge gained through this work will facilitate future efforts targeting gaps in care for other underserved populations in the US.

Each of the key findings include more detailed findings. The literature review is part of CAPC’s Project Equity and comprises the first of three components of its Equitable Access to Quality Palliative Care for Black Patients: A National Scan of Challenges and Opportunities. The inclusion of a study in the key findings does not imply that CAPC endorses or recommends the article.

About the Center to Advance Palliative Care

The Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability of quality health care for people living with a serious illness. As the nation’s leading resource in its field, CAPC provides health care professionals and organizations with the training, tools, and technical assistance necessary to effectively meet this need. CAPC is part of the Icahn School of Medicine at Mount Sinai in New York City. capc.org

To arrange an interview, please contact John Zoccola @ johnzoccola409@gmail.com or 267.664.2759.

Get the latest updates in your inbox!