Evaluation of Reporting of Race and Ethnicity in Hospice and Palliative Care Research

The disproportionate impact of the COVID-19 pandemic on marginalized communities due to structural racism has led to an increased focus on diversity, equity, and inclusion in medical literature. To assess pre-pandemic racial and ethnic representation among subjects in palliative care research, we examined the reporting of race and ethnicity in research presented at the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association State of the Science (SOS) plenary (2004-2019), as these articles frequently influence patient care and clinical practice. There were 126 articles identified and 88 met inclusion criteria. Among the eligible articles reviewed, there were 48 unique racial and ethnic categories. The most common groups specified were White (N = 77), Black (N = 52), and Hispanic/Latino (N = 36). More than two-thirds of the articles (n = 60, 68.1%) specified at least one nonstandard race or ethnic category not among those recommended by the U.S. Office of Management and Budget. Over half of articles (n = 53, 60.2%) combined minoritized groups into a nonspecific category (e.g., "other"), and 30 (34.1%) articles specified White populations alone or White populations with a nonspecific category for other groups. Seventeen (19.3%) articles included over 90% White participants, and only 3 (3.4%) articles had a minority health or health disparity focus. In this review of high impact, practice changing articles, the lack of appropriate representation of minoritized racial and ethnic groups, frequent use of non-standard categories to describe race and ethnicity, and the small number of articles focused on health disparities raise concerns about the generalizability of research findings, equity in research processes, and attention to populations that experience disparities in palliative care outcomes. There are substantial opportunities for investigators to adopt equitable practices that increase the inclusion of persons of diverse racial and ethnic backgrounds in research.