Black Lives in a Pandemic: Implications of Systemic Injustice for End‐of‐Life Care

Abstract

In recent months, Covid‐19 has devastated African American communities across the nation, and a Minneapolis police officer murdered George Floyd. The agents of death may be novel, but the phenomena of long‐standing epidemics of premature black death and of police violence are not. This essay argues that racial health and health care disparities, rooted as they are in systemic injustice, ought to carry far more weight in clinical ethics than they generally do. In particular, this essay examines palliative and end‐of‐life care for African Americans, highlighting the ways in which American medicine, like American society, has breached trust. In the experience of many African American patients struggling against terminal illness, health care providers have denied them a say in their own medical decision‐making. In the midst of the Covid‐19 pandemic, African Americans have once again been denied a say with regard to the rationing of scarce medical resources such as ventilators, in that dominant and ostensibly race‐neutral algorithms sacrifice black lives. Is there such thing as a “good” or “dignified” death when African Americans are dying not merely of Covid‐19 but of structural racism?

Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

“…They indicate that in this troubling time health care practitioners should not hold back on providing palliative care services and lean into patient care in creative ways that will define and solidify the identity of palliative care as the most compassionate and caring field. 159 Elbaum (2020) argues that "in the midst of the Covid-19 pandemic, African Americans have once again been denied a say with regard to the rationing of scarce medical resources such as ventilators, in that dominant and ostensibly race-neutral algorithms sacrifice black lives." 160 Impact of palliative care on quality of life and health care utilization.…”

“…159 Elbaum (2020) argues that "in the midst of the Covid-19 pandemic, African Americans have once again been denied a say with regard to the rationing of scarce medical resources such as ventilators, in that dominant and ostensibly race-neutral algorithms sacrifice black lives." 160 Impact of palliative care on quality of life and health care utilization. Several recently published meta-analyses and systematic reviews point to the significant role of palliative care interventions on enhancing quality of life and reducing symptoms burden and health care cost and utilization.…”

Awareness of Palliative Care, Hospice Care, and Advance Directives in a Racially and Ethnically Diverse Sample of California Adults

“…4 Furthermore, the lack of knowledge and misconceptions about end-of-life and palliative care have been blamed for low levels of hospice enrollment among these groups. 5 Elbaum (2020) argues that to the extent that these patterns are attributable to knowledge and access gaps, they should be considered health care disparities in their own right. 6 There are only a few interventional studies that have been designed to overcome educational barriers to using palliative and hospice care as well as advanced care planning among minority populations.…”

“…5 Elbaum (2020) argues that to the extent that these patterns are attributable to knowledge and access gaps, they should be considered health care disparities in their own right. 6 There are only a few interventional studies that have been designed to overcome educational barriers to using palliative and hospice care as well as advanced care planning among minority populations. [7][8][9] There is a strong need to refine end-of-life educational resources to reach non-Hispanic Black populations with varying needs.…”

Epistemic Ignorance, Poverty and the COVID-19 Pandemic

“…Many groups have a long-time mistrust when it comes to relying on their governments to watch over their safety and well-being. The enormous differences in how the virus is affecting racial and ethnic minorities, as we see among the black and Latino population in the United States (Fairchild et al 2020 ; Elbaum 2020 ), or citizens with black, Asian or other minority ethnic background in the United Kingdom (Siddique 2020 ), show that their mistrust is not misplaced. It will take work to regain certain citizen groups as cooperation partners due to historical injustices.…”