Figure:

Mary Murphy and her husband, Willie, who died the day after Thanksgiving 2021. Mary had cared for Willie at home in Nashville, Tennessee, with the help of Heart and Soul Hospice, a new local hospice agency focused on serving Black patients. Photo by Blake Farmer / WPLN News.

The typical patient census in hospice care is White, as is the nursing staff. A lack of widespread awareness about hospice and its benefits; low literacy and health literacy among potential beneficiaries; and cultural, religious, and language barriers are all challenges to ensuring greater diversity among hospice's patient population. Coupled with a nursing shortage exacerbated by the pandemic, it's no wonder administrators are struggling to create a more diverse nursing workforce and bring hospice services to more people from all backgrounds.

DISPARITIES IN END-OF-LIFE CARE

According to the 2021 National Hospice and Palliative Care Organization's Facts and Figures Report, almost 54% of White Medicare beneficiaries who died used the Medicare hospice benefit in 2019 compared with only about 43% of Hispanic and 41% of Black Medicare beneficiaries. Even fewer Asian American and American Indian/Alaska Native Medicare decedents used hospice that year (about 40% and 39%, respectively).

“It's difficult to enroll people of color into hospice programs, partly because they don't see people that look like them on the nursing side,” says Carole Fisher, president of the National Partnership for Healthcare and Hospice Innovation.

Underutilization of hospice by people from traditionally marginalized communities can lead to poorer experiences at the end of life, for both the patient and their family. Research has highlighted racial and ethnic disparities in end-of-life care, with a 2019 study published in SSM Population Health echoing the findings of other studies: African American and Hispanic patients tend to receive more aggressive treatment toward the end of life, which can lead to unnecessary pain and suffering.

“We also know that many cultures only want their families taking care of them, or will seek care within their own communities,” says Fisher. She thinks there's a misunderstanding of the support hospice can provide. That misconception trickles down to people who become nurses.

Tara Robinson, RN, is an admissions nurse at Unity Hospice near Green Bay, Wisconsin. Robinson, who is Black, says she can't recall admitting one Black or Hispanic patient to the hospice program to date. It's just not talked about in the African American community, according to Robinson. “It's a real shame that people aren't referred to hospice.” Several close family members have died over the past few years, she says, and hospice was never an option for them. “It means they suffered more than they had to.”

In its publication Know the Facts: Culturally Diverse Communities and Palliative and End-of-Life Care, the American Psychological Association (APA) notes, “Research indicates that culture contributes to differences in attitudes, preferences, behaviors, perceptions, and experiences related to palliative and end-of-life care,” and that “some racial and ethnic groups, such as African Americans, Latinxs, or Asians, may want more and aggressive treatment” at the end of life. Patients from these populations, the publication says, have unique perspectives on treatments that can impact their quality or length of life. Some groups are also understandably mistrustful of the health care system, the APA points out, due to historical disparities and unequal access to treatment, among other reasons. This can affect how patients view end-of-life care or create misconceptions about what it entails.

AGING POPULATIONS STRAIN RESOURCES

Aging populations are increasing demand for trained hospice nurses and other end-of-life care specialists. By 2060, it's estimated there will be more than 98 million Americans ages 65 and older, more than double today's numbers. A deficit of qualified health care workers who can meet the growing demand for home health, palliative care, and hospice services is expected in the coming decades.

More than 1,553,000 hospice RNs are currently employed in the United States, according to the career firm Zippia, which aggregates data from the Bureau of Labor Statistics and other sources. The vast majority are female (89.8%) and White (70%). Eleven percent of hospice RNs are Black or African American, 8.7% are Hispanic or Latino, 7.9% are Asian, and just 0.5% are American Indian and Alaska Native.

According to the APA, “There will be a dramatic increase in the number of racial and ethnic minority older adults, with the older Latinx population accounting for the largest increase.” Census Bureau data illustrate the increasing diversity of the U.S. population. Between 2010 and 2019, the Asian population grew by 29.3%, the Native Hawaiian or Other Pacific Islander population by 21%, the Hispanic population by 20%, the American Indian or Alaska Native population by 13.1%, and the Black or African American population by 11.6%. In contrast, the White population increased by just 4.3% during this period.

This reality has prompted many hospices to expand their diversity initiatives. The results of a study published in BMJ Supportive and Palliative Care in 2021 “suggest that hospices have a desire to improve racial/ethnic minority group inclusion for end-of-life care patients and families and can play an important role in reducing the existing disparities in end-of-life care.”

NURSE RECRUITMENT CHALLENGES

Renee McInnes, MBA, RN, chief executive officer of NVNA and Hospice, which serves communities on the South Shore of Massachusetts, says that although the agency has a high proportion of people of color working as aides and personal care workers, it's been a struggle to convince staff to return to school for a more advanced degree, despite available funding for tuition. She notes that many workers say they don't have the time because they are already working two jobs while raising a family.

“We need to give them financial support to be able to do this on top of working,” McInnes says. “Otherwise, it becomes a vicious cycle. And no matter how heavily you try to recruit, they're just not able to take the time to do the schooling.”

Betty Nelson, PhD, RN, director of the recently launched CalvaryCare RN Residency Program at Calvary Hospital in the Bronx, New York, says it can be difficult to find nurses interested in working with people at the end of their lives, because of both cultural and personal views on death. “Some celebrate transition, others fear it,” she says. “Others keep it under the radar screen.”

The Calvary residency program supports early-career nurses who are looking to specialize and those who are changing careers and want to better serve their communities, explains Nelson. The initial cohort of six residents runs the gamut from a young male Hispanic RN who views geriatric care as a calling to an African American woman who worked in computing and banking before becoming a nurse.

Even in an ethnically and racially heterogeneous city like New York, nursing staff diversity isn't always possible. That's where cultural competency training, education, and sensitivity concerning cultural norms associated with dying are vital, according to Nelson, “because we can't make the promise that a person will be cared for by a nurse who looks like them.”

Additionally, many patients require specific skill sets, like oncology or pediatric nursing expertise. Another obstacle: hospice care isn't often taught in nursing schools, which presents an even greater challenge to recruitment.

“There's very little, if anything, in the undergraduate nursing curriculum around palliative care. You just can't squeeze it in,” says Nelson, who has had a long career in academia and clinical nursing.

Although the numbers and types of specialties and scope of practice in nursing have expanded with the advancement of science, medical research, nursing research, and social policy, that makes it harder to determine what should be taught. If someone isn't exposed to hospice in a professional setting or if they had a bad experience with the dying process of a family member or friend, recruiting into hospice becomes even tougher, Nelson explains.

Robinson talks to as many aides and certified nursing assistants as she can, encouraging them to return to school for their nursing degree and to consider specializing in hospice.

“We have to really do a lot more educating and talking in the community to get people to come over,” she says. “How do we get diversity in our hospice workforce if people don't know how to go about coming into our field?”—Liz Seegert