Hospices must work to foster trust among minority and ethnic communities that are underserved by hospice, particularly during a pandemic that has disproportionately impacted people of color, according to a new position paper from the National Hospice and Palliative Care Organization’s (NHPCO) Diversity Advisory Council.
Demographic populations that historically have been underserved by hospice are among the most severely impacted by the COVID-19 pandemic. Members of the African American, Hispanic and Native American communities have seen high rates of COVID infections and associated mortality.
U.S. counties with a predominantly African American population, for example, tend to see three times the number of infections and six-times the number of COVID deaths than predominantly white counties, according to data published in April.
The NHPCO position paper addressed the importance of fostering trust in hospice and other health care providers among underserved populations as well as the ways emotional hardship affects chronic disease and bereavement.
“We don’t live in a bubble or on an island in isolation. What happens in the rest of society is going to impact hospice and care at the end of life,” said NHPCO President & CEO Edo Banach during a Facebook Live interview with NHPCO Diversity Advisory Council Chair Nicole McCann-Davis. “We’re dealing with disparities that have been brought to the fore as COVID-19 has had a disparate impact on communities of color, and we’ve seen the unrest across this country really calling for change. We are all in on ways that we can work together to address systemic racism. This includes ways that we can make hospice itself more accessible and more equitable.”
Hospice-eligible minority patients often pursue high-acuity care that is unlikely to be ineffective at their stage of illness, leading to unnecessary suffering for those patients.
More than 82% of Medicare decedents who elected hospice in 2017 were caucasian, according to the National Hospice & Palliative Care Organization (NHPCO). Comparatively, slightly more than 8% were African-American; 6.4% were Hispanic, and 1.7% were Asian. That year, only 0.4% of Medicare decedents were Native American.
In addition to lower rates of overall utilization, hospice patients who are members of minority communities are more likely to leave hospice, be admitted to the hospital, or visit the emergency department, research has found.
Health care disparities and disjointed, poorly coordinated care in the health care system prior to hospice or palliative care can impact end-of-life decisions among underserved communities, according to the paper.
“The most cited concern is maneuvering through or within the health care system before needing palliative and/or hospice care. If the access, treatment, resources, and care is lacking in the beginning, trust is less likely to be there in the moment of end-of-life,” the position paper said. “The number of cited cases that speak to the mistreatment of minority and underrepresented families is too numerous to just pick one. The blame for the cause of this mistrust is not one person or one group, but it is the nature of the system that has been created. Insurance rates and coverage, a profit-over-people philosophy, and access depending on geographical location are just a few contributing elements.”