Integrating culturally responsive approaches to trauma-informed care can help hospices to better address gaps of unmet end-of-life needs among underserved communities.
Generational racial prejudice can significantly affect the choices that patients and families make near the end of life, according to Ashley McGirt, licensed clinical social worker and racial trauma therapist. Improved cultural awareness is needed to understand the varying impacts of individuals’ lived traumatic experiences, she said.
McGirt is president and executive director of the Therapy Fund Foundation. She also serves as a clinician at McGirt Counseling & Services LLC and authored the book “The Cost of Healing in Silence: Navigating Racial Trauma and the Call for Culturally Responsive Care.”
“The Black community may experience things with resilience and powering through, leading to early mortality rates disproportionately from others,” McGirt told Hospice News. “Many times these historical, personal experiences don’t disappear and are exacerbated — especially when it comes to who gets what treatment and what kinds of treatments are considered eligible for hospice that are most impacted based on specific culture, race and ethnicity. Racial trauma is a fairly new term, so people haven’t really seen the whole impact or the extent of how racial prejudice actually affects our health outcomes.”
Confronting trauma
Racially and ethnically diverse groups have experienced medical mistreatment disproportionately compared to white patient populations.
Among the most significant cases was the U.S. Public Health Service’ Untreated Syphilis Study at Tuskegee conducted between 1932 and 1972. The decades-long study examined Black men 25 and older without their informed consent. Participants did not receive treatment for syphilis, resulting in a spread of the disease among Black populations. The study ignited changes to research practices and ethical standards in health care.
The Tuskegee study is just one of many examples of mistreatment that resulted in racial trauma among Black communities, McGirt said. The nation has a long list of “heinous atrocities” in medical experimentation on culturally diverse communities, she stated. The impacts have brought a deeply-rooted mistrust and misunderstanding in the health care system, McGirt said.
“What’s been done to Black and Brown bodies is a very real and lived experience in medical mistreatment,” McGirt said. “Many of them are passed down from generation to generation, whether we’ve seen, observed and witnessed the impact of it. Families remember how a loved ones’ pain was minimized, concerns were dismissed and lower quality care received, especially if you come from a racially diverse family.”
Breaking down barriers of historical mistrust involves a dedicated commitment to improved culturally responsive care delivery, according to Kush Das, CEO of Ennoble Care.
New Jersey-headquartered Ennoble Care offers home-based hospice, palliative and primary care in eight states and Washington, D.C. The privately-owned company is backed by private equity and venture capital firms such as Northwestern Venture Partners, Partners Group and Health Velocity Capital, among others.
“There are significant differences in how people perceive and understand palliative and hospice care across different communities,” Das told Hospice News. “That can make a pretty big difference as to whether people take advantage of the Medicare Hospice Benefit, and whether they’re actually getting the kind of responsive care that they should be with all of that support.”
Hospices need to understand the cultural variances that exist around death and the end of life, Das said. Each community has different beliefs, values and varying levels of understanding around hospice and palliative care. Greater representation could also go a long way toward improved understanding of the traumatic experiences that may prevent hospice utilization.
Strong referral partner and community relationships are needed to ensure early and timely access to hospice, Das said. The “biggest programmatic” approach that a provider can employ is dedicating resources to communication education and outreach, he added.
Systemic change is needed at the regulatory and reimbursement levels to move the needle toward change, according to Das.
“More and more we realize the real key is building trust way before that first hospice interaction happens, and the more it will benefit those communities that don’t trust the health care system,” Das said. “I’m hoping that there are more diverse entrepreneurs and more thoughtful caregivers where we’re actually tailoring the hospice benefit to focus on more of the patient population that we have in some systemic way. The thing that can make a real difference in Medicare savings if we pay more attention to different parts of the population.”
Hospices lack regulations or standards around culturally inclusive staff training policies, according to McGirt. This can result in wide variances in the types and consistency of this education.
Improving culturally responsive training is an ongoing process, she said. Hospices need continuous education in the historic and present challenges experienced among racially diverse communities. Also key is having dedicated resources to examine the impacts of racial trauma when it comes to patients’ emotional, physical and spiritual needs.
“It’s making sure you’re getting introspective in checking your own biases and ensuring that you’re putting yourself in an environment where you can meet new cultures, new identities and not in a silo or a box of isolating conversations,” McGirt said.
