Our nation’s capital ranks high in many things, from access to outdoor activities and number of museums to its ethnic and cultural diversity and vibrant LGBTQ+ population. But the city lags far behind in one key area: hospice care utilization.
While on average, just under half of Medicare decedents are in hospice care at their time of death, in the District of Columbia, only 25% are – ranking lower than 49 of the 50 states.
This is especially meaningful when considering how medical mistrust plays into this underutilization among the city’s extremely diverse population. Historically marginalized and minority populations have long faced barriers and stigma that prevent them from accessing care. Now, more than ever, medical professionals have an opportunity to build their trust so they can explore hospice care solutions if needed without hesitation.
According to the latest U.S. census, as of 2021 there were 1.2 times more Black or African American (Non-Hispanic) residents in Washington, D.C. than any other race or ethnicity. The city also has significant Hispanic and Asian American/Pacific Islander communities and the highest LGBTQ+ population by state, almost doubling the national average. For many residents and visitors, this is part of what draws them to the city – but it also illuminates why the number of residents who pursue healthcare such as hospice remains so dismal.
Health disparities begin long before a patient reaches end-of-life care. As Black women, we’ve witnessed firsthand how health disparities and generational mistrust have prevented loved ones and community members from getting needed care. According to an AP news study, Black Americans have statistically higher rates of maternal and infant mortality, childhood asthma, teenage mental illness, high blood pressure, Alzheimer’s and more. As the study concludes: “from birth to death, Black Americans fare worse in measures of health compared to their white counterparts.”
Similar disparities are pervasive among other communities of color and LGBTQ+ individuals. In our time working in hospice care, we’ve seen how members of these communities are inherently skeptical of our work. The idea that hospice truly provides safe, affordable care for their loved ones seems too good to be true. It’s contrary to virtually everything else they’ve encountered or couldn’t access before. As a result, they enter hospice care later into their illness, losing out on weeks or months of hospice benefits and ultimately shortening their length of care.
Imagine being in the shoes of a prospective hospice care patient: You may have decades of evidence to the contrary and are being asked to trust us in your illness journey. This is exactly why it’s on us to allay their doubts with better information and resources to help them access whatever care they need.
To be clear, this mistrust is a rational reaction to a field that has demonstrated systemic bias against minority populations for possibly as long as it has existed. For instance, many older adults remember the HIV/AIDS epidemic of the 1980s. More than 100,000 Americans died between 1981 and 1990. Gay and bisexual men, and secondarily Black and Hispanic populations, were most greatly affected, which many argue influenced how the government and medical community handled the crisis.
Looking even further back, the American eugenics movement perpetuated racist, ableist pseudoscience that has long been disproven – but it remains the foundation on which much of our medical system was built. Healthcare workers must be intentional about reshaping this landscape.
For medical professionals, understanding the historical context and allowing it to inform how we bridge the gap with these communities is essential to increasing access to end-of-life care. Common misunderstandings about hospice care – from its cost to its quality – create greater health disparities among the most vulnerable populations. In addition, Black and Hispanic participants are less likely to acknowledge their terminal illness for various reasons, including religious beliefs and cultural norms. But hospice care is often more affordable than inpatient treatment and for many is covered by Medicare, Medicaid or private insurance. The industry is full of highly trained medical professionals who truly put the patient and their loved one’s needs above all else. We must clarify these assumptions with compassion and understanding.
Considering the scope of both the individual and collective trauma that minorities have faced at the hands of the healthcare system, it’s understandable that there would be skepticism towards professionals’ intentions with something as precious and sensitive as their twilight years. But as a result, many are spending those years in and out of emergency rooms, uncomfortable, over- or under-medicated and often isolated from family and friends. People of color and other marginalized communities deserve better, and we are committed more than ever, working with partners to make sure they receive better end-of-life care outcomes.
Donna Gayles is a Director of Client Relations at Capital Caring Health and Associate Director at the Center for Health Equity. Audrey Easaw is Senior Vice President of Philanthropy & External Affairs at Capital Caring Health and Executive Director at the Center for Health Equity.