Despite rising demand and utilization for hospice care, gaps in access and awareness among communities of color continue to plague the industry. Grasping the systemic issues at the heart of these disparities will be key for hospice providers working to reach a larger and more diverse patient population.
Hospices have room to grow in reaching a more diverse patient population. Demographic disparities in access to and quality of hospice and palliative care have been persistent problems in the field for decades. African American, Asian and Hispanic patients made up less than 20% of Medicare hospice patients in 2018, while the remaining 80% of beneficiaries were Caucasians, according to the National Hospice and Palliative Care Organization.
“A big point is actually accepting that there are underlying issues of racism in our nation. Historically, racism has played a huge part in everything that results in how health care is provided,” said Shirlee Turner, chief medical officer at The Denver Hospice in Colorado. “Ground one is not to avoid or minimize the fear of saying we have a race issue. A lot of the issues we deal with in health care have race grounded in them. If we try to hide that piece of it then we’re hiding a piece of the part that’s going to help you fix the problem.”
A boom in the senior population is fueling demand for hospice and palliative care nationwide. Every day, roughly 10,000 people in the United States become Medicare eligible, a trend that began in 2011 and is expected to continue through 2030, according to the Medicare Payment Advisory Commission (MEDPAC). The country’s population will be “considerably older and more racially and ethnically diverse” by 2060, projects the U.S. Census Bureau.
Racism can be a taboo issue, but building knowledge around its deeply-seeded roots throughout the health care system is a starting point for building bridges to communities of color, according to Turner.
A study of more than 1,200 Medicare decedents nationwide found that African Americans were less likely than Caucasians to enroll in hospice. Around 43% of black Medicare beneficiaries from 2003 to 2007 had received any hospice care, compared to 57% of white individuals. African Americans had shorter lengths of stay, with 35% receiving three or more days of hospice, compared to 46.2% of Caucasians.
Because of a long history of mistreatment and neglect, many people of color, particularly seniors, develop a mistrust of the health care system long before they start considering their end-of-life care options, according to Turner. In some geographies, a lack of diverse cultural or ethnic representation among hospice staff can be an additional barrier to underserved populations.
“Most people of color don’t see people that look like them, and that in itself can be somewhat of a barrier,” said Turner. “There aren’t a lot of people in color that are in hospice and palliative care, and it’s incredibly difficult to recruit from a barren bowl. You can only be as diverse as your resources allow, but being able to have representation among your staff at all levels is helpful to start conversations and become advocates in your underserved communities.”
Though data are scarce on the race and ethnicity of hospice and palliative care clinicians, some numbers are available regarding physicians. Caucasians represented more than half, or 57.3%, of hospice and palliative care physician fellows in the United States between 2010 and 2012, according to a 2016 report from the American Academy of Hospice and Palliative Medicine and the George Washington University Health Workforce Institute. About 18.2% identified as Asian, 7.7% Hispanic and 4.7% African American.
Diversity initiatives have been a rising priority for hospices looking to foster equity and inclusion in their staffing ranks and patient population. Wisconsin-based Agrace Hospice & Supportive Care is among those stepping up outreach in underrepresented communities. The organization partners with Centro Hispano of Dane County in Madison to improve reach in Latino communities, and is also in the process of developing closer relationships with community-based National Urban League.
Agrace has also launched a diversity, equity and inclusion speaker series that invites community partners to discussions on how to best serve underserved populations.
“We know that historically underrepresented communities are more trusting of providers who look like them and share lived experiences,” Agrace President and CEO Lynne Sexten told Hospice News. “All staff receive training on cultural humility and unconscious bias starting at orientation. We’ve added diversity, equity and inclusion questions to our screening and interview process to ensure that the staff we’re welcoming aboard align with our mission, vision, values, and essence.”
Companies featured in this article:
Agrace Hospice & Supportive Care, American Academy of Hospice and Palliative Medicine, Centro Hispano of Dane County, George Washington University Health Workforce Institute, National Hospice and Palliative Care Organization, National Urban League, The Denver Hospice