As the issue of health equity becomes increasingly—and rightfully—recognized as a critical area of social justice, we must champion equitable access to hospice and end-of-life planning. Quality of life in our final days often hinges upon race and ethnicity.
A 2020 study published in Geriatrics found that, despite the overall increase in hospice enrollment in recent decades, racial disparities remain, with some racial and ethnic groups much more likely to receive overmedicalized care. In a cohort study of more than 1,200 participants, Black individuals were significantly less likely to receive hospice care than White individuals. They were also more likely to have multiple emergency department (ED) visits and hospitalizations, and to undergo intensive treatment in the last 6 months of life compared with white individuals, and that is regardless of cause of death.
Discrepancies in end-of-life treatment experiences persist along racial lines, even after the initiation of hospice care. In a 2018 study of a large, national sample of hospice patients, Black patients were at higher risk for hospital admission, ED visits, and hospice disenrollment. These disparities remained after adjusting for patient clinical and demographic covariates, as well as hospice-level random effects, suggesting these patterns were attributable to racial differences within the same hospice rather than systematic differences between hospices.
Barriers to hospice access are varied and complex. They range from distrust of healthcare institutions and a lack of access to local healthcare options to misunderstanding of, or unfamiliarity with, end-of-life services.
Many people in marginalized and underserved communities don’t have a primary care physician and instead seek treatment through urgent care or the ER. Not only does that mean patients lack a consistent and trusted healthcare professional who can initiate compassionate conversations about end-of-life planning, but also that many people get referred to hospice directly from the ER. When the emergency room is the point of entry, and that is the only interaction the patient or their family has had with the healthcare system, it’s understandable why hospice can be viewed with some degree of distrust. Furthermore, hospice and palliative care is often misperceived as out of financial reach. People are often surprised to learn that hospice is 100% covered by Medicare and other insurance carriers.
Reaching Out to—and Reflecting—Underserved Communities
Meaningfully addressing and dismantling these barriers calls for grassroots efforts from within the community. For example, in Orange County, CA, VITAS Healthcare’s multidisciplinary Vietnamese-speaking care team regularly speaks to Vietnamese groups through neighboring organizations to share culturally sensitive insights and answer questions.
The need for this kind of culturally attuned work is clear: While Asian Americans and Pacific Islanders make up 5.6% of the US population, by 2018, they only accounted for 1.8% of hospice users. In part, this discrepancy may be attributed to culturally driven misconceptions about the purpose of hospice. For people born in Southeast Asia, hospice may be seen as a place versus a service and entering hospice can be perceived as giving up. By going out into the community, speaking in their first language, and demonstrating empathy, healthcare professionals can truly “meet people where they are” and address concerns community members may not feel comfortable asking a clinician from another background.
To effectively reach out to and reflect the many communities we serve, elevating and operationalizing roles within hospice and healthcare focused on diversity, equity, and inclusion is essential. Developing authentic, long-term partnerships with community leaders and organizations can also be a critically important step forward in building community trust and promoting compassionate and productive dialogues about end-of-life considerations.
Starting With the Patient in Front of You
Ultimately, earning and maintaining trust is deeply personal. The importance of establishing a safe, respectful, and open patient-clinician relationship cannot be overstated. As physicians, we are uniquely positioned to help patients feel confident about choosing the end-of-life plan that’s best for them by providing both clinical insight and emotional support.
First, avoid assumptions. Even seemingly straightforward concepts like pain can be both perceived and communicated differently depending on one’s cultural reference. Some patients might not even recognize certain sensations as pain—or, at least, pain worthy of noting—based on their cultural expectations of what’s normal. Furthermore, physicians’ cultural beliefs and traditions can influence how they understand and treat pain. Caring for patients whose attitudes differ from our own presents a potential challenge—but also an opportunity for humility, learning, and growth.
Simply acknowledging our own biases and knowledge gaps is a powerful place to start. Then, address those gaps with compassionate curiosity. Learn about where your patients come from, how their history may inform their perception of healthcare and hospice, and how their generational status and inter-family dynamics may intersect with their national origin or racial or ethnic community.
Finally, educate yourself about hospice and palliative care to most effectively communicate options and address diverse patient concerns. Tap into free resources that help explain the clinical and financial details of end-of-life planning and offer guidance for communicating to patients, such as those found at VITAS.com. And help spread the word about how hospice leads to better quality of life for our patients by talking with your peers and affinity organization networks.
Everyone deserves equitable access to hospice care, and reaching marginalized and vulnerable communities is crucial. As physicians, we can help eliminate barriers by building trust, starting the conversation, and keeping the conversation going.