A community-based research project launched by California-based YoloCares has revealed that a lack of culturally appropriate educational opportunities is fueling hospice disparities among two underserved groups – Native American populations and rural patients.
The hospice and palliative care provider launched a three-year community health needs assessment initiative aimed at better understanding the barriers of access and utilization among rural and Native American communities across its service region, which spans five counties in and around Sacramento, California.
Dubbed the Life Transitions Project, more than 50% of respondents reported having no knowledge that palliative care, hospice and related grief services exist, according to a YoloCares report.
Lagging awareness around the nature of hospice and palliative care services is largely tied to both a limited number of these providers in rural areas and a lack of culturally sensitive education among Native American communities, according to researcher Brandy Jones, community educator at YoloCares.
“No general awareness of hospice and palliative care services is mentioned or provided in the places they receive care until it’s an impending need and they have little to no time to prepare or make informed decisions for family members or loved ones,” Jones told Hospice News in an email. “And once the care is received, providers have no cultural awareness or lack the sensitivity to adhere to their traditional customs or beliefs.”
Similar to other underserved populations, fear of discrimination and mistrust are the biggest walls between Native Americans and hospice.
Mistrust of the health care system and discomfort with medical providers made up a combined 30% of the research project’s responses.
Underserved communities reported compassionate care is lacking across their health systems, Jones indicated. Greater diversity and representation among interdisciplinary hospice staff members could go a long way to bridging cultural divides, she added.
“Overwhelmingly reported were acts of bias, stigma, ongoing health care discrimination, no appropriate coping supports and responses to historical traumas [being] misunderstood and not considered by health care and social service providers,” she said. “Native American and Latino community members reported unwillingness to welcome an in-home care team due to a lack of cultural representation in health care systems. [Hospice and palliative care providers] can prepare to care for these communities by increases in diverse hiring practices.”
Unmet social determinants of health needs were also frequently reported barriers to utilization among rural and tribal communities. Many Native American seniors live in rural, frontier, tribal and geographically isolated communities and territories. This poses unique physical challenges in access and availability of health care.
Nearly half (44%) of respondents indicated limited financial resources as barriers to health care, while lacking transportation across long distances to health care and the inability to take time off of work also topped the list, at 30% and 37%, respectively.
The research project’s findings not only elevate disparity concerns among underserved populations, they also offer a “blueprint” to help other hospices break down health equity barriers, a YoloCares representative told Hospice News.
One strategy hospices can employ to improve access is diversifying spiritual care offerings to be more inclusive of a wider base of belief systems, according to Jones.
“Spirituality offerings for hospice and palliative care cannot be a one size fits all,” Jone said. “[They] should consider widening their networks to be inclusive of Indigenous beliefs and practices for these families when requested (building networks is essential) – to include shamans, smudging, drumming, sage burnings.”
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