Addressing demographic disparities in hospice utilization can ensure more patients receive quality care at the end-of-life as well as open untapped markets to hospice providers.
Nearly 87% of Medicare decedents in 2016 were caucasian, according to the National Hospice & Palliative Care Organization (NHPCO). Comparatively, slightly more than 8% were African-American; 2.1% were Hispanic, and 1.2% were Asian. That year, only 0.2% of Medicare decedents were Native American.
“The business challenge of hospice care is to transform care and services to meet a more dynamic mix of people of various races, cultures and backgrounds. Improved and equitable business practices are needed to meet the needs of all hospice consumers and employees,” an NHPCO diversity report said. “As hospices strive toward access for all, the business base of your organization will become more diverse. New populations will gain knowledge of your services. Your leaders will need increasing business expertise to meet new population and market challenges.”
Minorities have seen the largest percentage gains in purchasing power since 2000, according to the Selig Center for Economic Growth at the University of Georgia. The combined buying power of African Americans, Asian Americans and Native Americans reached an estimated $2.4 trillion in 2018, while spending power among Hispanics in the United States hit $1.5 trillion.
Too much of that spending power among hospice-eligible minority patients may be going towards high-acuity care that are likely to be ineffective at their stage of illness, leading to unnecessary suffering for those patients. 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.
Numerous factors contribute to low utilization among minorities. One of the most significant is an issue that affects patients across all demographics: Lack of awareness.
“I think it always boils down to what that individual understands about hospice. We in the industry need to figure out how we educate that individual as an individual.” Ronnie Duncan, chief diversity officer for Agape Hospice, told Hospice News. “I think that to lump the process into a particular race or gender classification does a disservice. Of course in certain communities usage is low, but then the question becomes what has the industry done within itself to educate that one individual, not the group but that one individual.”
Lack of awareness does not only apply to patients and families, Duncan explained. Many of the clinicians in a position to refer patients to hospice also do not understand the hospice care model or are resistant to ending aggressive treatment. Many hospices engage in outreach to local hospital systems and primary care providers to educate the physicians and nurses about hospice and palliative care and their benefits.
Though more research is needed to explicate the root causes of health disparities, studies have identified some population-specific factors that influence whether or not a minority patient will elect to enter hospice.
Among some demographics, spiritual and religious beliefs foster a desire to preserve life at all costs, prompting patients to continue with aggressive treatments when they are unlikely to be effective, studies indicate. Others may have developed a mistrust of the health care system due to past injustices or concerns about racism.
Organizational factors that contribute to low utilization include a lack of minority clinicians, limited outreach to diverse communities, and a lack of interpreters for non-English speaking patients.
“If a hospice’s workforce doesn’t match the makeup of the broader community, it is never going to have a patient and family base that reflects that diversity,” Brenda Gonzalez, diversity manager for Madison, Wis.-based Agrace Hospice. “It’s powerful for underserved communities to know that we have staff of color and to feel reflected in the staff that are providing services to their loved ones. We also work to include authentic images of diversity in our internal and external materials.”
Agrace Hospice has partnered with local and national community organizations such as the Latino Chamber of Commerce, the Network of Black Professionals, the Latino Health Council, and local news and radio outlets to raise awareness, provide education about hospice, and to request feedback from those communities.
To promote greater workforce diversity, Agrace has developed a scholarship program for high school minority students and adults who want to become certified nursing assistants and attends job fairs and conferences that are likely to include diverse attendees and candidates.
In addition to outreach, Gonzalez told Hospice News, organizations should strive to look inward.
“First and foremost, we look internally to be able to think about what our implicit biases are,” she said. “And we have the conversation about identifying and removing barriers to accessing hospice dare that groups face.”