A race-conscious approach toward research on racial inequities in palliative care

Abstract

Racial inequities in palliative and end-of-life care have been well-documented for many years. This inequity is long-standing and resistant to many intervention efforts. One reason for this may be that research in racial inequity in palliative care, and the interventions developed, do not account for the effects of race and the everyday racism that patients of color experience while navigating the healthcare system. Public Health Critical Race Praxis (PHCRP) offers researchers new routes of inquiry to broaden the scope of research priorities in palliative care and improving racial outcomes through a novel conceptual framework and methodology. PHCRP, based off critical race theory (CRT), contains ten principles within four foci to guide researchers toward a more race conscious approach for the generation of research questions, research processes, and development of interventions targeting racial inequities.

Introduction

Race is a social construct and an imprecise proxy connected to many social factors and racism exposures in our society.^1,2 Race is associated with unequal allocation of opportunity and resources and associated with many poor health outcomes through distinct forms of structural injustice that diminishes the well-being of and systematically disadvantages racially marginalized groups.³ Race is also closely associated with unequal economic and social opportunity. Unequal opportunity, in turn, affects financial stability, power and inclusion in established economic and political structures, and educational opportunities and attainment.^4,5 As a result, racially minoritized patients experience many of the known documented effects of racism on health and healthcare including higher burden of illness, increased mortality, and worse health outcomes overall.^2,4–6

Racial disparities in palliative care and at end-of-life (EOL) have been well-documented for many years.^7–11 Non-White patients, particularly Black patients, are more likely to experience burdensome, expensive, high intensity EOL care.^7–14 Non-White patients are more likely to visit the emergency department, become hospitalized, and die in-hospital.¹¹ Non-White patients have longer lengths of stay, are more likely to receive mechanical ventilation and cardiopulmonary resuscitation at EOL, and less likely to have a do-not-resuscitate order or withdraw life-sustaining therapies.^10,15 They are also less likely to receive palliative care¹⁶ or enroll in hospice.⁸ These differences in care have been attributed to numerous factors^7,17,18 and targeted by many interventions, but without the hoped-for positive impact.^16,19–21

With such long-standing inequity that has been resistant to intervention efforts, a different approach in both the investigation of these inequities and in intervention development are required. In clinical research, race is often treated as an individual factor, similar to other risk factors for diseases and health outcomes. As such, little to no examination is given to how race and racism^22,23 influence the production of knowledge in healthcare inequities. A lack of race consciousness, especially the understanding of how structural, interpersonal, and internal racialization influences perceptions, leaves investigators vulnerable to unquestioned assumptions and actions. Calls for critical examinations of how race has been conceptualized in research in other fields is reshaping how the association of race with various health and healthcare outcomes is viewed.^22,24–29 We need a critical examination of how race is conceptualized in palliative care to explain these inequities, and to develop interventions. Here, we propose that Public Health Critical Race Praxis (PHCRP) offers researchers new routes of inquiry and to broaden the scope of research priorities in palliative care to improve racial outcomes.

A new approach to palliative care research

PHCRP, developed and described extensively by Chandra Ford & Colins Airhihenbuwa, ^23,24 is an adaptation of critical race theory (CRT). CRT originated in legal studies to address how racism operates above and beyond explicit expression by demonstrating ways in which the same structures can create disparate outcomes for people of different races.³⁰ CRT has subsequently been utilized in multiple other disciplines.^31–33 PHCRP is an application of CRT tenets through mixed-methods research approaches that can be applied to public health research. PHCRP includes both framework and processes for researchers to critically examine the production of scientific knowledge, generate new questions around racial inequities, and inform research processes and interpretation of its findings.²³ PHCRP is a flexible and iterative methodology that emphasizes counternarratives to the majority through the stories, experiences, and narratives of marginalized communities in research, and draws attention to intersectionality (the overlapping influence of multiple marginalized identities).^23,34 PHCRP is organized with four foci or phases of the research process, and ten principles from CRT.²³ Here, we briefly describe PHCRP’s schematic and processes, describe how its approach to research differs from conventional approach, and provide examples of how PHCRP is being used in our palliative care research on racial inequities.

PHCRP: Four focuses and ten principles and its application to research

PHCRP contains four focus areas: contemporary patterns of racial relations, knowledge production, conceptualization and measurement, and action. Overarching and permeating throughout PHCRP is race consciousness, a principle that is woven into all four PHCRP foci.³⁵ Race consciousness requires that researchers 1) are aware of one’s own racial position in society and acknowledge that this position biases and influences one’s perception of the world via differing experiences in a racialized society; and 2) acknowledge how race and racism affects the daily lives of racially minoritized patients. Indeed, by clarifying their own racial biases, researchers recognize that “colorblind” approaches reassert racial inequity by failing to account for ongoing racial bias and racism, whether explicit or implicit. Given the multi-level influence of racism in US society,^1,5 research on racial inequity should always acknowledge and name racism, and avoid reliance on the assumptions that racial differences in health and healthcare are due exclusively to “non-racial” factors like biology, genetics, comorbidities, severity of illness, geography, or social determinants of health.³⁶ Although racial differences are mitigated by adjusting for these factors,⁹ these differences often stem from systemic racism.

Foci

The first focus of PHCRP, contemporary patterns of racial relations, investigates how racism functions in the time period during which a study is occurring, particularly for patients that are most marginalized. For instance, researchers focused on racial inequities should consider how multiple current events such as the COVID-19 pandemic, the highly publicized killings of unarmed Black people, and the resurgence of the Black Lives Matter movement, affect their research processes and interpretation of results.^23,35 This backdrop may have a profound effect on the definitions of value and quality of life, both quantitatively and qualitatively for participants. These are foundational concepts to palliative care that, if experienced differently by race, would alter how researchers interpret racial differences in care and outcomes.

Focus 2, knowledge production, is used to understand how racialization informs our research questions, reinforces existing racial beliefs, and continues to stigmatize marginalized communities. This process requires us to abandon colorblind approaches to palliative care research and perceptions that scientific objectivity offers protection from bias, and instead assess how underlying assumptions may be rooted in biased prior research.³⁷ For instance, racial framing implicitly or explicitly places White populations as the default definition of normal, or even superior. This collapses the marked nuance and variation that exists within any non-White population and narrows research interests to points of difference to White populations. It easily causes researchers to miss entire areas of strength or possibilities to explore within non-White populations.

Focus 3, conceptualization and measurement, examines how measures and variables of interest are defined, how racism influences these measures, and identifies the work needed to redefine variables and propose new race-conscious ones. For example, investigators measuring depression, suicidal ideation, and post-traumatic stress disorder in various cultures and racial or ethnic groups are testing the applicability and necessary adaptations of these measures in settings with more diverse cultural, racial, and ethnic backgrounds.^38,39 Measures and constructs around racial inequities should be context-specific, depending on the patient population being studied and the place in which they are being studied.

Lastly, using focus 4, action, means that researchers do more than report “racial differences,” but rather that they act on their findings. All efforts in racial disparities research should be equity-oriented, meaning that studies are designed so that results are actionable, regardless of their content. Health interventions should be applicable to and directly benefit racially minoritized communities by disrupting one or more causes of inequity.

Principles

There are ten PHCRP principles within the four focuses (Table 1). Utilization of these principles, and the focuses in which they lie, can help shift the way researchers approach problems of racial inequity in palliative care. For brevity, we highlight three principles and how their application can offer new perspectives in palliative care research. One principle, race as a social construct, acknowledges that race is derived from social, political, and historical forces,² countering the idea that racial differences in health and healthcare outcomes are due primarily to biological or genetic differences, and re-emphasizing race as the strongest risk factor for discrimination exposures.² Another principle, ordinariness, recognizes that race is embedded in the social fabric of society and occurs in the daily lives of people of color. Lastly, voice states that the perspectives of racially marginalized persons should be prioritized when researching inequities in those patient populations.

Table 1:

Public health critical race praxis in palliative and end-of-life care research

Principle	Definition	Foci	Usual approach	PHCRP approach to palliative care research
Race consciousness	Awareness of one’s racial position	All	Presume that empirical methods of research are objective and ‘colorblind’	Clarify one’s own racial biases and actively consider how they may impact study design and interpretation choices in palliative care and end-of-life research, especially within the context of studying diverse patient populations
Primacy of racialization	Racial inequities and other societal problems are due largely to racial stratification	Contemporary patterns of racial relations	Race is treated as a covariate with other variables	Include factors hypothesized to reflect and influence structural racism in studies on inequity rather than solely race
Race as a social construct	Race is derived from social, political, and historical forces	Contemporary patterns of racial relations	Race is seen as a biological entity	Treat race as a risk factor for racism and other discriminatory experiences
Ordinariness	Race is embedded in the social fabric of society	Contemporary patterns of racial relations	Racism and racist incidents are considered rare in healthcare	Racism is subtle and ubiquitous, including within healthcare environments
Structural determinism	Macro-level forces drive and sustain racial inequities	Contemporary patterns of racial relations	Emphasizing individual or interpersonal factors as driving forces of racial inequities	Consider multilevel healthcare policy and structural factors that promote and perpetuate racial inequities in palliative care
Social construction of knowledge	Established knowledge in a discipline can be reevaluated using antiracist analyses	Knowledge production; Conceptualization and measurement	Using biological differences between race to examine racial differences in health and interpretation of research findings	Clarify how societal position of marginalized patients influences enrollment into research studies and how this affects results and impact on future study designs. Require within-group variation of racially patterned factors (e.g. socioeconomic status) to avoid conflation of race with racism.
Critical approaches	Develop a more comprehensive understanding of one’s own biases in research	Knowledge production; Action	Assume that research results are objective findings	Always consider alternative explanations for inequities in palliative care than those traditionally posited, with emphasis on perspectives from those traditionally disempowered
Voice	Prioritize the perspective of marginalized persons, “centering the margins”	Knowledge production; Action	Routine privileging of majority voices and perspectives	“Center the margins” by making perspectives of racially marginalized patients in research a priority
Disciplinary self-critique	Examine how discipline norms influences the generation of research questions, knowledge, and its impact on broader society	Action	Limited critical examination of norms and assumptions in racial difference in palliative care and end-of-life outcomes	Examine how research norms (e.g., quality of life) influence interpretation of racial outcomes in palliative care and impacts conventional knowledge in palliative care and medicine more broadly
Intersectionality	Treating social categories like race, gender, and sexual identity as interlocking, rather than additive	Conceptualization and measurement	Race and gender are treated as independently co-occurring	Awareness of unique and negative history of treatment of patients with multiple marginalized identities in the medical system

Traditional approaches to research assume that empirical methods are impermeable to social influences and structures that perpetuate racism and racist ideas. But such an approach does not acknowledge that research questions, the processes by which these questions are originated and investigated, and the results that are generated, occur within a highly racialized society where White normativity devalues the perspectives and voices of others. Without the deliberate incorporation of unconsidered perspectives of racially marginalized patients, research in this setting will perpetuate bias and exclusion. Attribution of “racial inequalities” in palliative care to race without explicitly pointing toward racism does not acknowledge the pervasiveness of everyday racism, including interactions with healthcare workers and the healthcare system. As such, we miss opportunities to explicitly name racism and develop interventions that address the everyday racism in healthcare that patients of color experience. Use of these three principles challenges researchers to treat race not simply as a risk factor, but as a way to identify populations at risk for specific racism exposures. Allowing for unconsidered perspectives, not just from researchers, but importantly from patients “on the margins” can have important implications.^24,40 Researchers may reconsider study designs and enrollment and recruitment processes, including the utilization of community-based research methods, informed by how racially minoritized patients and potential research participants view a particular research study and their perspectives of a study once enrolled.

To think about how PHCRP can introduce new approaches to studying racial inequities in palliative care, consider the following: racial differences in palliative care have been attributed to differences in preferences, religion and spirituality, acculturation, and mistrust.^7,17,18 For instance, higher preference for more intense EOL care is well documented among Black patients. Decreased knowledge about advance care planning (ACP) amongst racially marginalized groups has been reported,^7,17 and mistrust affects how clinicians’ intentions are perceived.^7,17 Improving palliative care implementation decreases healthcare intensity, improves quality of communication, and decreases intensity of EOL care.¹⁶ Partnerships with community- and faith-based leaders can improve ACP.^20,21 Despite these and other interventions, however, racial inequities in palliative care persists. Racially marginalized patients continue to disproportionately experience increased aggressive, non-beneficial, goal-discordant care with poor quality of life and high healthcare costs at EOL. What is missing or under-addressed in the development of these interventions, the analyses, and the interpretation of these results, is that these interventions and inequities in outcomes do not exist in a colorblind vacuum of empirical research, free from everyday racism.

Table 1 describes each PHCRP principle and how the PHCRP approach to research compares to traditional approaches. To demonstrate this, we will use our investigation into how racial inequities in communication may affect decision-making for racially marginalized patients as an example. To investigate how contemporary patterns of racial relations affects one’s work, one may understand how research in this area is impacted against the backdrop of the disproportionate deaths of Black, Latinx, and Asian patients from COVID-19^42,43 and the spotlight on inequitable triage and resource allocation decision-making.^37,44 This context may strongly affect conversations around life-prolonging therapy among patients and their families. The focus knowledge production would prompt an examination of the oft reported fact that Black patients simply prefer to have higher intensity care, investigating how and why this preference is shaped within the prior life experiences of a Black patient. For instance, clinicians are less likely to treat pain in Black patients adequately.^45–47 Knowing this, preference is no longer an unexamined fact, and instead becomes an indication to question the potential effects of prior experiences with undertreatment of pain on later preferences for palliative and EOL care. The focus conceptualization and management leads to questioning whether a given set of proposed measures for quality of patient-clinician communication can account for and capture the sequelae of healthcare racism, microaggressions, and stereotype threat. Lastly, the focus area action ensures that this line of research inquiry would not end before the development of interventions that improve patient-clinician communication for racially marginalized patients, often via actions that disrupt structural inequity.

In addition to the wealth of scientific inquiry these four foci can create, the ten PHCRP principles can be used to guide the research itself. The principle voice would inform qualitative work centered on the perspectives of racially marginalized patients to plan, execute, and refine intervention development, and obtain real-time feedback during deployment and pilot testing of a program. Voice allows the disinvestment from White normativity, and full exploration of different perspectives within the racially marginalized group. The principle ordinariness informs interview guide development to capture possible influences of everyday racism. It also guides variable selection in quantitative research to include proxy measures of structural racism (i.e., neighborhood context and residential segregation). Lastly, race as a social construct forces researchers away from vague biological or cultural essentialism (i.e., “Black people are just like this”) and toward examination of how internalized and interpersonal racism experiences, including the relative race consciousness of clinicians, influences communication quality in predictable racialized patterns. As a whole, this approach, and its results, sits in contrast to the omission of racism in work examining racial differences in palliative care, the pervasive attribution of differences to factors such as preferences without explanation, and lack of connection made between the sequelae of disproportionate socioeconomic disadvantage with upstream structural factors. Consequently, we can see how the traditional approach results in either inaction, or inadequately informed action.

Conclusion

Promoting and utilizing PHCRP by the research community requires a deep shift away from the traditional approaches to studying the enduring racial inequities in palliative care. We can do better. PHCRP should not be used to simply quantify relationships between race-related risk factors and individual-level health outcomes, but used as a tool to immerse researchers into how race and racism affects clinical outcomes and the healthcare experience for racially marginalized patients.²⁴ It requires self-reflection and outreach to bring in experience and expertise in how race and racism shapes daily life. We encourage researchers to seek out education and training on the levels of racism and their intersection with health.

PHCRP offers a way of approaching racial inequities in palliative care, a critical perspective through which to view prior research in palliative care, and a pathway to novel approaches moving forward. We encourage institutions to actively recruit both trainees and faculty members with expertise specifically in racism and health, and to apply their considerable creativity and passion for scientific progress to evaluate these long-standing inequities through a new lens.

Key Message:

This article describes how Public Health Critical Race Praxis can be utilized as both framework and processes to guide researchers toward a more race conscious approach in the generation of research questions and the development of interventions to address racial inequities in palliative and end-of-life care.