Racism in Palliative Care Research: We Still have a Ways to Go

Fischer, Stacy; Isaacson, Mary; Sharma, Rashmi; Johnson, Kimberly S.

doi:10.1016/j.jpainsymman.2022.09.009

Cited by 3 publications

(3 citation statements)

References 8 publications

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“…Suggested approaches to reduce palliative care inequities include improving clinician cultural awareness and workforce diversity, in addition to patient-focused interventions associated with improved health literacy, reduced mistrust, and increased uptake of ACP documentation. 10 , 56 , 57 , 58 Medical mistrust has often been attributed to egregious historical injustices, such as the Tuskegee experiment and other forms of scientific racism. 59 However, participants in our study did not cite Tuskegee as a reason they did not trust the medical system; they cited the everyday silencing and smothering of their voices.…”

Section: Discussionmentioning

confidence: 99%

Perspectives About Racism and Patient-Clinician Communication Among Black Adults With Serious Illness

Brown,

Marshall,

Snyder

et al. 2023

JAMA Netw Open

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ImportanceBlack patients with serious illness experience higher-intensity care at the end of life. Little research has used critical, race-conscious approaches to examine factors associated with these outcomes.ObjectiveTo investigate the lived experiences of Black patients with serious illness and how various factors may be associated with patient-clinician communication and medical decision-making.Design, Setting, and ParticipantsIn this qualitative study, one-on-one, semistructured interviews were conducted with 25 Black patients with serious illness hospitalized at an urban academic medical center in Washington State between January 2021 and February 2023. Patients were asked to discuss experiences with racism, how those experiences affected the way they communicated with clinicians, and how racism impacted medical decision-making. Public Health Critical Race Praxis was used as framework and process.Main Outcomes and MeasuresThe experience and of racism and its association, as described by Black patients who had serious illness, with patient-clinician communication and medical decision-making within a racialized health care setting.ResultsA total of 25 Black patients (mean [SD] age, 62.0 [10.3] years; 20 males [80.0%]) with serious illness were interviewed. Participants had substantial socioeconomic disadvantage, with low levels of wealth (10 patients with 0 assets [40.0%]), income (annual income &lt;$25 000 among 19 of 24 patients with income data [79.2%]), educational attainment (mean [SD] 13.4 [2.7] years of schooling), and health literacy (mean [SD] score in the Rapid Estimate of Adult Literacy in Medicine–Short Form, 5.8 [2.0]). Participants reported high levels of medical mistrust and high frequency of discrimination and microaggressions experienced in health care settings. Participants reported epistemic injustice as the most common manifestation of racism: silencing of their own knowledge and lived experiences about their bodies and illness by health care workers. Participants reported that these experiences made them feel isolated and devalued, especially if they had intersecting, marginalized identities, such as being underinsured or unhoused. These experiences were associated with exacerbation of existing medical mistrust and poor patient-clinician communication. Participants described various mechanisms of self-advocacy and medical decision-making based on prior experiences with mistreatment from health care workers and medical trauma.Conclusions and RelevanceThis study found that Black patients’ experiences with racism, specifically epistemic injustice, were associated with their perspectives on medical care and decision-making during serious illness and end of life. These findings suggest that race-conscious, intersectional approaches may be needed to improve patient-clinician communication and support Black patients with serious illness to alleviate the distress and trauma of racism as these patients near the end of life.

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Section: Discussionmentioning

confidence: 99%

Perspectives About Racism and Patient-Clinician Communication Among Black Adults With Serious Illness

Brown,

Marshall,

Snyder

et al. 2023

JAMA Netw Open

View full text Add to dashboard Cite

show abstract

“…This approach deeply involves vulnerable individuals, allowing them to identify challenges and craft solutions from their unique perspective, instead of relying exclusively on insights from experts or providers. 23 , 54 Certainly, support for research, conducted by racially/ethnically diverse investigators, focused on innovations to address disparities in palliative care among marginalized populations is badly needed. 54 Explicitly acknowledging the impact of structural racism is also important, in addition to an individual's conscious and unconscious biases and stereotyping, as an uppermost factor on disparities in palliative care.…”

Section: Discussionmentioning

confidence: 99%

“… 23 , 54 Certainly, support for research, conducted by racially/ethnically diverse investigators, focused on innovations to address disparities in palliative care among marginalized populations is badly needed. 54 Explicitly acknowledging the impact of structural racism is also important, in addition to an individual's conscious and unconscious biases and stereotyping, as an uppermost factor on disparities in palliative care. 23 , 51 …”

Section: Discussionmentioning

confidence: 99%

Racial disparities in inpatient palliative care consultation among frail older patients undergoing high-risk elective surgical procedures in the United States: a cross-sectional study of the national inpatient sample

Kim

Muench

Maki

et al. 2023

Health Affairs Scholar

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Surgical interventions are common among seriously ill older patients, with nearly one-third of older Americans facing surgery in their last year of life. Despite the potential benefits of palliative care among older surgical patients undergoing high-risk surgical procedures, palliative care in this population is underutilized and little is known about potential disparities by race/ethnicity and how frailty my affect such disparities. The aim of this study was to examine disparities in palliative care consultations by race/ethnicity and assess whether patients’ frailty moderated this association. Drawing on a retrospective cross-sectional study of inpatient surgical episodes using the National Inpatient Sample of the Healthcare Cost and Utilization Project from 2005 to 2019, we found that frail Black patients received palliative care consultations least often, with the largest between-group adjusted difference represented by Black–Asian/Pacific Islander frail patients of 1.6 percentage points, controlling for sociodemographic, comorbidities, hospital characteristics, procedure type, and year. No racial/ethnic difference in the receipt of palliative care consultations was observed among non-frail patients. These findings suggests that in order to improve racial/ethnic disparities in frail older patients undergoing high-risk surgical procedures, palliative care consultations should be included as the standard of care in clinical care guidelines.

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Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment

Jones,

Simpson,

Beck

et al. 2024

The Journal of Pediatrics

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Racism in Palliative Care Research: We Still have a Ways to Go

Cited by 3 publications

References 8 publications

Perspectives About Racism and Patient-Clinician Communication Among Black Adults With Serious Illness

Perspectives About Racism and Patient-Clinician Communication Among Black Adults With Serious Illness

Racial disparities in inpatient palliative care consultation among frail older patients undergoing high-risk elective surgical procedures in the United States: a cross-sectional study of the national inpatient sample

Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment

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