In the delicate landscape of end-of-life care, a glaring disparity casts a long shadow over the African-American community, underlining a tale of historical injustice and persistent inequities. Despite the tireless advancements in healthcare, Black individuals in the United States continue to be markedly underserved in hospice utilization, a critical service designed to provide comfort, dignity, and peace in the twilight of life. Against the backdrop of a historical mistrust in the healthcare system, seeded by infamous episodes like the Tuskegee Study, this discrepancy is more than a statistical difference; it is a stark reminder of the deeply entrenched racial divides that continue to impact the African American community, even in their final moments of life. As the conversation about equitable healthcare echoes louder across the nation, it’s crucial to address and dismantle the barriers Black people face in accessing quality hospice care, ensuring every individual’s right to a serene and dignified end-of-life experience.
Recent data from the National Hospice and Palliative Care Organization (NHPCO) amplifies this discrepancy, showing that nearly 54 percent of white Medicare patients utilize hospice benefits, compared to roughly 41 percent of Black Medicare patients.
This gap in hospice utilization stems from a profound and justified mistrust within the African-American community toward the healthcare system. Historical malpractices such as the unconsented use of Henrietta Lacks’ cells for research have sown seeds of doubt and fear, creating a substantial barrier for Black people in accessing various health services, including hospice care.
In Detroit, a city with a predominantly Black population, the disparities in access to and utilization of hospice care reflect a microcosm of a nationwide issue. Here, across the country, Black families have statistically been less likely to leverage hospice services compared to their white counterparts despite often confronting serious illnesses such as cancer and heart disease that necessitate such care. Rooted in a complex matrix of insufficient knowledge about hospice services, historical and systemic mistrust of the healthcare system, and an underrepresentation of African Americans in hospice care professions, this disparity requires dedicated attention. According to a study from Duke Health, these factors coalesce, creating a barrier that inhibits many African-American families from accessing the comprehensive and compassionate end-of-life care they deserve.
Step forward, David Turner, an entrepreneur who recognized this gap and founded CNS Hospice back in 2014 with a background in the industry since 2008, he has become a strong advocate for championing and rendering hospice care in Wayne, Macomb and Oakland counties, especially as such care pertains to African American and Hispanic communities, establishing Detroit’s first Black-owned hospice center. Turner and his team have strategically worked towards alleviating some of the barriers inhibiting Black families here in Detroit and surrounding areas from utilizing hospice services by focusing on community education and fostering a workforce that resonates with the local demographic. “As one of the few Black owned hospice providers currently operating, I have had the honor and pleasure to offer high quality end of life care to hundreds of families that perhaps would otherwise not have taken advantage of the Medicare/Medicaid hospice benefit. While there are no short cuts or easy solutions to narrowing the gap in utilization, my agencies have always focused on making sure that our staff reflects the communities that we serve at all levels including senior leadership, and we do significant what I refer to as “community in-reach” it’s not outreach if you’re already there!”
Reports reveal that Black Americans often seek more intensive treatments like mechanical ventilation, gastronomy tube insertion, and multiple emergency room visits in the last six months of their lives, as opposed to choosing hospice services. This preference for more aggressive interventions reflects not just a lack of awareness about hospice but also a preference rooted in the wariness of the medical community.
Amid this bleak backdrop, efforts are emerging to bridge this chasm of mistrust and unfamiliarity. Organizations are endeavoring to reach African American communities through various avenues like churches, barber shops, hair salons, and community groups – all areas that are perceived to have high traffic within the Black community. By using these platforms, the goal is to inform and reassure Black families about the benefits and functions of hospice care, dispelling myths and breaking down historical barriers.
However, outreach alone may not suffice in resolving this issue. The importance of Black-owned hospices cannot be overstated in this context. Black-owned hospices can play a pivotal role in connecting with African-American families on a profound and personal level, providing information, support, and a sense of familiarity and trust that is often lacking in the larger healthcare system. By creating a more culturally competent and understanding framework for end-of-life care, Black-owned hospices have the potential to significantly increase hospice use among African-American patients, enhancing the quality of their end-of-life experience.
Palliative care involves discussing what matters most to a patient’s quality of life, such as being able to care for their pets. monkeybusinessimages/iStock via Getty Images Plus
In the midst of this complex issue, real-life stories emerge that illuminate the profound impact of hospice care on African-American families navigating the emotional terrain of end-of-life transitions, much like Jamie Clark, a middle-aged Black woman who recently faced the heart-wrenching ordeal of burying her beloved mother. Initially, Jamie and her family shared common reservations about hospice care, uncertain of its role and benefits. “At first, I was really reluctant because I wasn’t familiar with it,” Clark recalls, her voice tinged with the memory of that uncertain time. Her apprehension echoed the sentiments of many in the African-American community, a collective hesitation born from a lack of information and historical mistrust.
Despite these concerns, Jamie’s experience transformed her perception entirely, becoming a testament to the profound relief and support that hospice services can offer. “Hospice was the best thing that happened, not only to our entire family but especially to my mom as she transitioned to the end of her life,” Jamie expresses with heartfelt gratitude. Her mother’s final days were marked by compassion, comfort, and the serene presence of hospice caregivers who eased her journey, dispelling the fears and uncertainties that had initially clouded Clark’s mind. This personal narrative underscores the transformative potential of hospice care, a crucial resource that many African-American families, unfortunately, remain disconnected from.
In addressing these persistent disparities, the significance of advanced care planning and advance directives comes to the fore. Studies show that such crucial end-of-life documents are less likely to be in place for Black Americans, impacting the quality of their end-of-life care and decisions. Encouraging and assisting African American families in creating these documents is a critical step towards ensuring they have autonomy and control over their end-of-life care, leading to a more comfortable and dignified passing.
Moreover, Black-owned hospices can play a crucial role in education and outreach within African-American communities. They can disseminate accurate and accessible information about hospice care, demystifying it and addressing the common misconceptions and fears that many people have. By providing clear, compassionate, and culturally relevant information, Black-owned hospices can help African-American families make informed decisions about end-of-life care, ensuring that their loved ones have the dignity, comfort, and respect they deserve in their final days.
Black-owned hospice owners such as Turner, who is now founder and CEO of Heart N Soul Hospice, which has locations in Nashville, TN and Renton, Washington.
Turner expresses that, with his prior offices in Metro-Detroit, served the inner city of Detroit and its outskirts, had a very diverse team, and looked to connect with civic and social organizations to not only “share our message but also to find out what we can do to help them reach their goals. Community engagement should always be a two-way street, and we are mindful of making sure that we are good corporate citizens. I frequently speak about the mission within the mission, which is to do everything in our power to make sure that everyone, regardless of race, ethnicity, sexual orientation, or religion has information, access, and opportunity to receive care, comfort, and compassion as they near the end of life.”
In essence, Black-owned hospices stand as beacons of trust, understanding, and respect within the African-American community. They have the power to transform end-of-life care for African Americans, ensuring it is a time of peace, dignity, and compassion, surrounded by providers who understand and honor their cultural context, values, and wishes.
A report published in the Journal of the American Medical Association Network Open highlights the nationwide trend towards the use of hospice services, a development viewed positively as it reduces emergency department visits and intensive, invasive life-preserving procedures. However, the gap between Black and white patients in hospice use underscores the urgent need to address the barriers and disparities in hospice care for African Americans.
The struggle faced by Black people in America is a narrative steeped in centuries of systemic oppression, discrimination, and inequality. Historically, African Americans have confronted formidable obstacles in nearly every aspect of life, from education and employment to housing and healthcare. These struggles have not only been physical and economic but also psychological, with the traumatic impact of racism and inequality reverberating through generations.
Regrettably, these multifaceted challenges extend into the realm of end-of-life care, casting a shadow over what should be a time of peace, dignity, and comfort. Even in these final moments, Black people often face hurdles in accessing high-quality, compassionate hospice and palliative care. The lingering skepticism towards the medical community, compounded by a lack of information and representation in hospice care, exacerbates the emotional and physical turmoil experienced by Black individuals and their families during this sensitive time.
Contrast this with the experiences of many white individuals, who more frequently avail of comprehensive and empathetic hospice services, ensuring a more comfortable and dignified end-of-life journey. This disparity in end-of-life experiences between Black and white Americans highlights the pervasive and insidious nature of racial inequality in healthcare.
In the face of such persistent struggles, the emergence and growth of Black-owned hospices represent a beacon of hope and change. These institutions stand as a testament to the resilience and determination of the African-American community to overcome barriers and carve out spaces of empathy, understanding, and cultural competence within the healthcare system. By fostering an environment of trust, respect, and dignity, Black-owned hospices have the potential to markedly enhance the end-of-life experience for Black people, ensuring that their final chapter is written with care, compassion, and honor that oftentimes wasn’t always available during their lifespan.
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