Providers have increasingly focused on closing racial and cultural gaps to equitable hospice care among historically underserved populations. Investing in culturally competent staff and local outreach could help break down barriers preventing many African American, Hispanic and Native American patients from accessing hospice.
Racial disparities in utilization of hospice and palliative care persist, with data from the U.S. Agency for Healthcare Research and Quality showing that black and Hispanic populations are less likely to receive a referral than white patients. Providers seeking to bridge racial divides have worked to better understand the root causes for these disparities and communicate the value of hospice care within underserved communities.
Misconceptions about end-of-life care and a lack of trust in the health care system at large are among the frequently occurring barriers, even as hospice providers seek to improve their outreach to underserved communities.
“The aspect of mistrust in the health care system is a really impactful variable of equity. Hospices need to close the gap in terms of gaining trust,” Raymond Capella, vice president of clinical services for Enclara Pharmacia, told Hospice News. “There is an opportunity that if hospices do their outreach right, they could capture a wider audience of patients to bring on and provide these hospice services. The return on investment is absolutely to benefit organizations when you bring hospice care to the community.”
About 82% of hospice patients in 2018 were white, compared to 8.2% for African Americans and 6.7% for Hispanics, according to the National Hospice & Palliative Care Organization. All other racial or ethnic demographics totaled 3.1%. Providers will need to expand education about the nature of hospice and palliative care to reach these underserved groups and expand into untapped markets, according to a recent white paper by Enclara Pharmacia.
Research has indicated that a lack of health literacy among minorities may be a leading roadblock to hospice and palliative care. A patient with low health literacy may have a limited understanding of information and terminology specific to health care. Minorities may be disproportionately affected by the impacts of health literacy according to a 2008 study, with African Americans more likely than whites to choose aggressive care at the end of life even after hearing verbal descriptions of their condition.
“We have to re-tailor our marketing materials and re-tailor how we communicate to certain populations,” said Capella. “The way you communicate isn’t just a fifth-grade reading level versus tenth-grade. It’s also taking into account cultural differences, words to use, and how you think about how the care is provided, really trying to tailor that for each of those individual groups.”
One outreach strategy is to distribute more accessible written and visual materials into these communities, according to Christine Schaeffer, clinical nurse specialist for Maryland-based Gilchrist Hospice Care. The hospice has increased efforts to use simplified language and illustrations in community outreach materials, as well as verbal presentations and to help increase understanding of hospice care.
“We need to do it in a non-condescending way, understanding that we’re all coming from a different place,” Schaeffer said. “We need to be careful to meet them where they are, and to present the materials and teachings in a way that ensures we actually connect with the patient and the family so that they can understand things.”
Hosparus Health employed an Ambassador Program to deepen roots into underserved groups throughout their service regions of Kentucky and southern Indiana. The program’s outreach staff engages with existing local leaders to foster trust and stem community relationships. Staff undergo training and education to help community members understand the nature of hospice care and the services available to them.
“We’ve seen tremendous impact by engaging existing leaders within those communities that people trust more than us,” said Bethany Snider, senior vice president and chief medical officer of Hosparus. “In many cases, it’s about repairing distrust with the health care system as a whole. That’s not an easy task, but I think it’s a worthy one. And it’s something that our organization is working every day to do better.”