Editor’s Note: This article is part of a Health Affairs Forefront series on Racism and Health, published in conjunction with the February issue of Health Affairs Journal. Read other posts in the series on the Racism and Health landing page.
Critical events of the past two years—from the disparate outcomes of the COVID-19 pandemic to the murder of George Floyd that sparked a global movement against intolerance and racial injustice—have exposed the unremitting consequences of systemic racism in nearly every facet of society. Health care is no exception. Racism permeates even the most sacred spaces of serious illness and dying—a final blow that mandates the most absolute intolerance.
Available across the life course and serious illness continuum, palliative care is a values-driven approach to providing holistic care for patients and their families in the setting of life-threatening illness and injury. Despite its benefits related to optimizing quality of life and relieving suffering, equity in palliative care for racially and ethnically minoritized communities is lacking. There remain important gaps in the availability, accessibility, appropriateness, and understanding of these services across diverse and racially minoritized populations (for example, Black, Hispanic, Indigenous, people of color). Much can be done to improve and expand access to palliative care with strategic attention to dismantling racism.
In this Forefront article, we discuss strategies for palliative care clinical practice and training, and recommendations for research, policy, and leadership, to mitigate the impact of racism in palliative care and re-center historically excluded populations.
Racism In Palliative Care
Structural racism—the systemically imposed discrimination and inequality that emerge from societal and institutional power structures—affects multiple aspects of health care delivery, including the timing of palliative care access, minoritized peoples’ trust in health systems and providers, and equitable financing of care. More specifically, racial inequities manifest in serious illness as disparities in diagnosis and treatment of illnesses and symptoms that would benefit from palliative care referrals, as well as lower use of palliative care services. For instance, Black and Hispanic patients are less likely to use hospice services for myriad reasons, such as mistrust in the health care system and providers stemming from colonization, racism, cultural differences, and personal approaches to health and medicine.
Many types of racism—from the individual and interpersonal to the systemic and structural—plays a role in patients’ end-of-life experience, including the care they receive, how they die, where they die, and whether their preferences are captured and honored. The Western end-of-life health care system is built on values and assumptions that do not meet the needs of all patients but rather those who have more resources (for instance, easier time accessing medical care and more caregiving support in the home environment), excluding some people of color who do not have these resources. Along the lines of the Anglo medical construct, some medical providers may assume that dying at home is preferred, which tends to be truer for White patients. Compared to Whites, Black patients across age groups have higher odds of dying in the hospital, which has been suggested to reflect higher preferences for life-sustaining interventions. More aggressive end-of-life care and poorer pain and symptom management for racially and ethnically minoritized groups are also associated with advance care planning disparities. Significant limitations also exist in access to quality care in the home setting for communities of color. Furthermore, historical and current racial injustices in the Western health care system can contribute to patients’ perceptions of the type of care they will receive across settings, which influences their decision making.
Strategies To Address Racism In Palliative Care Practice
To ensure that clinicians delivering both primary and specialty palliative care are equipped to identify and confront the systemic racism that permeates all aspects of care for minoritized patients, efforts are necessary to: recognize and explicitly name racism in the context of serious illness; address embedded racism and misconceptions around the pain and suffering from communities of color; and integrate a community-trauma lens into patient care. This antiracist approach should be rooted in cultural humility and promote non-paternalistic, asset-based, community-clinician partnerships. Often our own patients and peers may provide important insight about how to be antiracist. Such education strategies should convey to clinicians that confronting racism overall and in serious illness is a lifelong learning process and requires commitment to providing high-quality care to all—especially for historically excluded patients.
Foster And Practice Cultural Humility
Health care systems often act as closed systems, ensconced in the culture of biomedicine’s focus on biochemical, physical phenomena of disease and an embrace of reductionism. When former Journal of the American Medical Association Deputy Editor Edward Livingston claimed “No physician is racist, so how can there be structural racism in health care?” he blatantly mirrored this “dominant” culture, negating the significance of social location.
To promote cultural humility in clinical practice, our first step is to avoid self-referentialism. Strategies include setting aside our egos, engaging in deep listening to patients’ stories, suspending our own judgments and assumptions, and challenging the traditional patient-clinician power differential. Given the long history of indignities imparted on Black people and other communities of color, it is incumbent for us to lead with respect; to engage in small acts of dignity that have historically been withheld, such as saying, “Good morning,” asking permission to engage and to touch, and addressing patients by their surname.
It is important to remember that while chronic stress can adversely affect health, patients’ vigilance may have an adaptive function in mediating the relationship between racism and stress. When patients of color encounter the health care system, they may be in a state of hypervigilance, responding to a legacy of medical maltreatment and the threat of illness. This stress response may impede patients’ ability to process health information, further highlighting the critical role of good, authentic, and intentional communication and the clinicians’ responsibility to convey information clearly and repeat as often as needed to ensure patient understanding. To be proactive, clinicians should be aware of cultural preferences for high and low context communication, recognizing that words comprise only a small percent of our overall communication with patients. Not only are shared decision-making models necessary to align with the goals and values of patients with serious illness, but trauma-informed care may offer benefits for facilitating trust and empowerment among patients who have been historically excluded and oppressed.
Nationally implemented quality measures for evaluation of culturally responsive care for people living with serious illness are generally nonexistent. Such quality measures would equalize the standing issues of culture and background alongside other standard-of-care assessments, such as evaluation of pain and emotional distress.
Take Accountability For Implicit Biases
Palliative care professionals can begin to dismantle racism by continuously assessing their own implicit bias—attitudes or stereotypes toward people that manifest without their conscious knowledge. False notions about the fundamental biological differences between Black and White populations continue to inform a dangerous belief that the Black body can simply tolerate more pain or discomfort than the White body. For example, there is a growing evidence base to support the reality that Black patients are less likely to be believed when they report pain and symptoms, and are three times more likely than White patients to say that their preferences were not taken into account. Increased knowledge among clinicians is a critical first step but, as observed in other fields, may be insufficient to change behavior on its own.
Clinicians must adopt the ongoing practice of assessing the biases they bring to care delivery and then connecting this self-awareness to their engagement with Black patients and communities to create sustainable behavior change in the face of systemic racism.
Education and training efforts must be realistic about the extent to which clinicians can rely on their professional judgement—no matter how well-intentioned. Objective systems implemented for screening and assessing pain and other symptoms are needed. All patients must be screened with evidenced-based tools (such as the Edmonton Symptom Assessment Scale) at every single patient encounter, and those symptoms must be accurately documented to help minimize clinician biases and improve care delivery. And where these systems do not exist, education and training efforts must empower palliative care clinicians to advocate for their adoption and implementation.
Redesign Training And Education
There are few formal training programs to learn and practice antiracism skills in palliative care. One exemplar is the Justice, Equity, Diversity, and Inclusion (J.E.D.I.) Medicine mini-fellowship program at Stanford University. However, significantly more support is needed to scale these promising training initiatives. Outcomes tracking related to antiracist education in palliative care is critical.
In addition, education for palliative care professionals should highlight and reinforce that racially minoritized communities are not a monolithic group. Even as health care professionals learn about other communities and cultures that are different from their own, they must recognize that each patient is an individual with their own history, trauma, and values. The practice of individuation—focusing on specific information about each individual to inform decision making—has been shown to reduce implicit bias. Using scripts such as Vital Talks “Communication Skills for Bridging Inequality During the COVID-19 Pandemic” can help clinicians gain a better understanding of patient experiences and their history with the health care system. Obtaining and refining high-quality communication skills can help establish rapport and navigate challenging conversations. Taken together, incorporating these strategies into professional education and training can promote cultural humility and begin the challenging, overdue work of addressing racism in palliative care and the larger health care system.
Even as we acknowledge that there are significant disparities in health care—including in serious illness and end-of-life care, structural racism has hindered our understanding of historically excluded patients, where gaps in care exist, and actions necessary to make change. Many institutions and public health data sets have significant amounts of missing data on factors such as race, ethnicity, and primary language, limiting our ability to accurately detect the extent of existing disparities in care. Additionally, current national quality metrics on disparities do not fully capture clinically meaningful components of palliative care delivery. Research and policy solutions to reduce disparities in the care of people living with serious illness and their families must integrate the historical perspective and acknowledge the outsized role of the social determinants of health (SDOH)—which for palliative care include loneliness, food access, poverty and financial toxicity, and insufficient or unsafe housing—in care delivery, quality, and outcomes.
Biomedical research has been deeply intertwined with structural racism and oppression, perpetuating societal division since the early 19th century. From the case of Henrietta Lacks and beyond, the list of medical abuses is long. Furthermore, the construct of “race” has been used as a “label of convenience” to explain patterns of health and disease, causing further harm to the communities that we claim research is designed to “help.” While health equity is a public health priority and some states have declared racism as a public health crisis, many evidence-based interventions have focused on modifying an individual’s personal agency while failing to address the upstream social determinants that prevent individuals and communities from achieving optimal health outcomes. Yet, despite this legacy of harm, there is ample opportunity to course-correct palliative care research to better support and ensure equitable treatment for diverse patients living with serious illness.
The US research enterprise has long held randomized controlled trials (RCTs) as being the gold standard for generating scientific knowledge and determining efficacy. However, more work must be done to integrate communities when using RCTs, particularly in partnering with and incorporating patients from diverse communities into the studies. Additionally, researchers must also be deliberate in initiating projects and studies that use community-engaged and driven methodologies, such as community-based participatory research (CBPR) to promote social justice and equity. The crux of these methodologies is building in time to develop authentic, bidirectional relationships, which fosters trust between community members and researchers by asking questions, examining and addressing biases and power dynamics, and ensuring no one is silenced throughout all phases of research. CBPR offers a promising avenue for palliative care research, specifically, given the emphasis on prioritizing community members’ needs to deliver culturally aligned care. For example, CBPR research has been used to test the feasibility of a culturally based tele-palliative care consult in the rural South. Finally, researchers employing any modality must support pathways (including stepping aside when appropriate) for the advancement of researchers within these communities, so they may lead their own research if desired.
We are long overdue for social justice-based research, and as researchers, clinicians, and policy makers—we, too, must take time to consider our blind spots. Additionally, integrating intersectionality has the potential to transform the research enterprise by placing social justice, diverse representation, and equity at the center. More research efforts are needed to increase public awareness of the issues affecting disproportionately burdened communities. Only by building an equity-focused agenda in partnership, while explicitly considering systemic racism and other complex multilevel factors, will we avoid perpetuating the divisive legacy of science rooted in White privilege. Communities must be the drivers of palliative care research and be the leaders in identifying needs and eliciting priorities. Researchers must avoid decontextualizing and dehumanizing research findings and implications. This will ensure that the impact of research is tied to the SDOH and lived experiences of communities.
Advancing Policy And Leadership
Structural racism impacts rates of health insurance coverage, particularly among patients from racially minoritized and poor communities on a global scale, and affordability of care—important factors that prevent people from accessing palliative care. Both the National Patient Advocate Foundation (NPAF) and the National Caucus and Center on Black Aging, Inc., highlight financial toxicity as possibly the most pressing concern among people living with serious illness and their families, and one that disproportionately impacts Blacks, Hispanics, and other racially minoritized groups. The NPAF suggests several tools such as the Comprehensive Score for Financial Toxicity (COST) measure, PRAPARE, and Health Leads’ Social Needs Screening Toolkit to help understand how finances and SDOH affect care decisions and give providers resources to address these in partnership with patients and families. Continued implementation of the Affordable Care Act and expansion of Medicaid, policies to reduce cost sharing for high-value services (such as palliative care), greater investments in models that address holistic factors associated with health and well-being, and redoubling efforts to strengthen the US safety net can all help support broader access to care—particularly for those living with serious illness.
Additionally, experiential gaps in the health workforce can affect care received by diverse patients whose suffering is already misunderstood and minimized. Data about leadership composition within the palliative care specialty workforce is lean, but reviews of palliative care training programs in the US reveal few who identify as people of color. Racial disparities across senior medical school and hospital leadership positions have been well documented, and this may influence advancement opportunities within the field. Outside of leadership, formal survey-based research indicates less than 10 percent of palliative care clinician team members self-report as racial or ethnic minorities, with the largest racially minoritized physician group being of Asian descent, who comprise nearly 9 percent of physician survey respondents.
Public policy can help ameliorate this lack of diversity and representation in medicine, including in the palliative care specialty. For instance, the Resident Physicians Shortage Act, endorsed by the National Medical Association, the American Academy of Hospice and Palliative Medicine, and many others, would remove some of the systemic barriers to medical education that disproportionately impact current and future physicians of color. The overwhelmingly bipartisan Palliative Care and Hospice Education and Training Act (PCHETA) would also help expand the interdisciplinary palliative care workforce by establishing career awards though the US Department of Health and Human Services and loan forgiveness programs for advanced degrees in palliative care; and providing financial support to nursing, social work, and medical schools and multidisciplinary health professional education programs who teach palliative care.
Paving A Path Forward
Access to and acceptance of palliative care is not uniform across society: Racially minoritized communities have been largely left out, in part due to myriad iterations of racism. To address the impact of structural racism, we must advocate for improvements in clinical practice and training in the care of patients with serious illness, including enhanced strategies for addressing clinician biases and assumptions toward patients of color at the end of life. We also need to: increase the systematic collection of race and ethnicity data for people living with serious illness; incorporate more patient-driven quality measures in care, expand CBPR in palliative care; and pass policies that address health care access and promote a more diverse palliative care (and broader health care) workforce. It is important to note that advocacy initiatives must be coupled with policies mandating institutional reform rather than simply expecting that health care providers of color shoulder the burden of remedying the implications of centuries-old medical and societal racism. Policy reform must therefore be structurally oriented and systems altering.
Although we strove to create an author team comprising diverse racial, cultural, ethnic, sexual orientation and gender, professional, and other identities, we have not accounted for every perspective or stance related to resolving racism in the serious illness context. We aim to advance a discourse on how health care systems and stakeholders can create an antiracist culture in palliative care and do not assume this publication to be exhaustive of all needed or potential approaches to achieve equitable palliative care access and delivery for all historically excluded groups that experience racism. William E. Rosa acknowledges the National Institutes of Health/National Cancer Institute (NCI) Cancer Center Support Grant No. P30 CA008748 and is supported by the NCI award No. T32 CA009461.