What Are the Racial and Ethnic Health Disparities That Exist in Palliative Care?

Introduction and Scope of the Problem

Racial and ethnic health disparities exist within health care systems in relation to access to care, receipt of care, and quality of care ( Fig. 76.1 ). Given unequal access to health systems and inherent systemic racism, many minority patients seek care later in a disease trajectory, receive more aggressive care, and often have increased morbidity. This is especially true when it comes to those with serious illness who have varying exposure, perceptions, and access to palliative care.

There are many definitions for health disparities; in this chapter, the National Institute on Minority Health and Health Disparities (NIMHD) definition will be used, which states that health disparities exist when “there is a significant disparity in the overall rate of disease incidence, prevalence, morbidity, mortality or survival rates” in a given population as compared to the health status of the general population. There are also many definitions for race and ethnicity, often stemming from societal constructs and self-identification (i.e., an individual’s social identification within a larger context based on a racial, ethnic, cultural, or social group). For the purposes of this chapter, the National Institutes of Health’s (NIH’s) Office of Management and Budget (OMB) classifications for race and ethnicity will be used. In this classification schema, race is divided into five categories: American Indian or Alaska Native, Asian, Black or African-American, Native Hawaiian or Other Pacific Islander, and White. Ethnicity is divided into two categories: Hispanic or Latino and Not Hispanic or Latino. The authors acknowledge the triangulation of race and ethnicity and that most patients do not fit into a simple checkbox in the demographics section of a medical intake or research form. While there are many racial and ethnic groups, this chapter focuses on those who are Black and Hispanic as minority populations given the abundance of literature indicating disparate outcomes among these groups.

The U.S. Department of Health and Human Services and its Healthy People 2030 initiative defines social determinants of health (SDOH) as environmental factors that affect health, functioning and/or well-being, and quality-of-life outcomes and risk. Fig. 76.2 depicts the interplay of economic, social, and cultural factors impacting SDOH. SDOH are directly linked to health disparities and inequities seen among minority populations, leading to inferior health outcomes, increased mortality, decreased life expectancy, and increased morbidity.

In recent years, the acknowledgment of structural racism has entered health care delivery discussions. Structural racism exists within American health care systems and has been laid bare by the SARS-CoV-2 coronavirus that led to the COVID-19 pandemic. Increased rates of COVID-19–related diagnoses, hospitalizations, and deaths have been disproportionately identified among Hispanic and Black communities due to unequal access to care, low income, and inability to practice social distancing. Systemic racism impacts patients’ end-of-life experience in terms of how they die, where they die, their trust in the health system and health care providers, and whether their preferences are honored at end-of-life.

While palliative care research has identified that racial and ethnic disparities in the access and use of specialty palliative care exists, there remains minimal evidence-based research among palliative care–specific studies that include race and ethnicity. When 18 American Society of Clinical Oncology (ASCO) trials integrating palliative care into standard oncological care were assessed from 2012 to 2017, only one-third (6) of the trials reported specific racial and ethnic minority patients; one-third reported “White” versus “other,” and one-third did not specify race or ethnicity. Current evidence of race, ethnicity, and palliative care is likely biased, selective, and not generalizable given these research limitations.

This chapter discusses current data on palliative care–related racial and ethnic disparities, specifically among Black and Hispanic populations using the NIMHD research literature framework that addresses disparities as it relates to access, receipt, and quality of care. Given the limitations in specialty palliative care disparities research, this text will cover both disparities in the use of specialty palliative care as well as those core components of primary palliative care delivery.

While health disparities exist globally in palliative care, racial and ethnic health disparities are well documented and published within the United States. Thus this chapter focuses geographically on disparities in palliative care focusing on the United States. Finally, the text will identify concrete next steps to move toward health equity.

Access to Palliative Care

Palliative care has become standard of care for patients living with serious illness. As such, access to palliative care services has increased over the last two decades, with palliative care programs increasing from 658 (25%) hospitals in 2000 to 1,831 (75%) hospitals in 2016. The percentage of annual hospital admissions receiving an initial palliative care consult increased from 2.5% in 2008 to 5.3% in 2017. While palliative care has become more widespread across the United States, access to palliative care remains inequitable.

Gaps in access to specialty palliative care still exist geographically among minority patients. Palliative care access is lower in states that are less racially diverse, lower in socioeconomic status, and lower in terms of “openness” (as defined by Hoerger et al., this refers to those states with people who have views that are relatively more skeptical, traditional, and concrete [e.g., Alabama, Alaska, Mississippi, Oklahoma, and Wyoming]). In comparison to 90% of Northeast states that have palliative care programs, fewer than 50% of hospitals in the Deep South have palliative care programs (again as defined by Hoerger et al.). Only 54% of safety net hospitals or public hospitals have palliative care teams. Beyond geography, health literacy impacts the type of care one gets and one’s knowledge about palliative care and is therefore an additional impediment to access extra support for minority patients with serious illnesses.

The literature demonstrates that minority patients do not have the same access to pain management. Pain assessment and treatment disparities stem from (1) medical provider subconscious or conscious racial biases on how a patient experiences pain, and (2) patients’ trust in the medical system. In a study of outpatient oncology patients, race and health insurance dictated the type of opioid prescribed, with oxycodone more likely to be prescribed to those with private health insurance and those who were White compared to morphine. Availability of pain medications differs based on race; pharmacies do not stock the same quantity of opioid medications, often having inadequate stock of opioids in non-White neighborhoods. Additionally, Black cancer patients who did not graduate from high school and whose household earnings were below the federal poverty line report barriers to getting opioid medications: nearly 66% had trouble getting their opioids filled, and some had to wait days for their medication or return to the pharmacy multiple times. These barriers contribute to poorer outcomes among minority patients with serious illness.