NHPCO: Language, Mistrust, Lack of Diverse Staff Come Between Hospices and Underserved Populations

Language barriers, mistrust of the health care system and a lack of diverse staff are the most common obstacles between hospice care and underserved communities, research from the National Hospice and Palliative Care Organization (NHPCO) recently found.

NHPCO’s Diversity Advisory Council, in partnership with Transcend Strategy Group, recently polled more than 1,200 individuals among LGBTQ+, Hispanic/Latino and African American populations nationwide to gain a better understanding of the root causes behind ongoing health care disparities. Adults surveyed for the Diversity, Equity & Inclusion (DEI) Lens report included those who had experienced the recent loss of a loved one, or who had been involved in decision-making for someone with a serious or terminal illness during the past three to four years.

“Even as hospice uptake has grown nationally for the last two decades, we continue to see that White Americans chose hospice at higher rates than Hispanic, Black, Asian and Native Americans,” NHPCO COO and interim CEO Ben Marcantonio said in a statement. “While national data sets are not available to get a full picture of hospice uptake by sexual or gender identity, we know anecdotally that many LGBTQ+ individuals have significant hesitancies when it comes to hospice.”

Large contingents of respondents across all of the populations NHPCO and Transcend surveyed agreed with the statement that “Doctors often wait too long to talk about hospice,” leading to a “crisis decision,” the report said.

Another key finding was that fewer Black (39%) and Hispanic (41%) respondents were aware that hospice is a Medicare benefit, compared to 52% of White respondents, the research found.

Nearly one-third of LGBTQ+ respondents cited mistrust as the largest barrier to hospice, indicating that they “doubted” or were “unsure” that hospices would respect their sexuality and/or gender identities. Late referrals was another common barrier, with nearly half of the surveyed LBGTQ+ adults agreeing that, “doctors waited too long to bring up hospice.”

“Trust serves as the center point for whether patients and the community utilize hospice care or not,” an NHPCO spokesperson told Hospice News in an email. “Trust shows up in different forms, like language and consistency in what the hospice organization states that their resources are. The other key factor is that providers are not having the important discussions early on, [likely] because of the lack of managing language barriers and staff who can relate to the patient and family and help build trust.”

Members of LGBTQ+ communities often forego conversations about end-of-life care due to fears of discrimination, researchers have found. Around 70% of 200 transgender and gender nonconforming minority adults in a 2022 survey reported encounters with some form of discrimination in their health care experiences, according to a July 2022 study in the Journal of the American Medical Association (JAMA). This deterred them from discussing their goals of care and end-of-life wishes with providers, the study found.

To move the needle on these problems, hospices will have to engage with their referral partners, according to NHPCO.

The advocacy group recommended that hospices offer in-service education programs for clinicians in other settings on how to have conversations about hospice with patients and families and share this data set with referring organizations.

“Providers continue to see the need to build trust, which ultimately defines whether a patient and their family stay in hospice after they have elected [it],” the NHPCO spokesperson said. “In addition, providers still find that referrals to hospice are coming far too late. For diverse patient populations to truly optimize use of the hospice benefit, upstream providers in primary care and hospital settings need to continue to have conversations with their patients about hospice and palliative care options much earlier in their disease trajectory.”

Language is also a barrier for many patients, particularly among Hispanic families. In the NHPCO/Transcend survey, 52% Hispanic, non-native English speaking respondents said this was their biggest barrier.

Providers should make available written materials (both print and digital) in a variety of languages and in a culturally appropriate way, as well as develop best practices for engaging with interpreters, NHPCO recommended.

This kind of consideration can resonate with patients and families, survey findings suggest.

“I would feel if you’re non-Hispanic, but you spoke Spanish and could communicate, I would have some

type of a bond,” one Latino respondent said in the report.

A lack of representation and diversity among health care staff was the leading access issue among Black respondents to the NHPCO survey. Almost a quarter (21%) stated they would feel more comfortable with hospice workers of the same ethnicity as their loved one. Lack of trust and culturally competent care were other leading barriers among African American patients and families.

“A person who looks like me, when they look at my family, will be able to understand a little bit differently versus someone who doesn’t have the same cultural experiences,” one Black respondent stated in the NHPCO report.

In its report, NHPCO encourages hospices to prioritize culturally proficient care and provide staff with ongoing education on the cultural issues important to the communities they serve.

Though the staff diversity issue is prevalent in health care, a rising number of hospices are working to recruit employees from different cultural, racial and ethnic backgrounds. About 67% of hospices polled in a 2022 LeadingAge/BerryDunn study indicated that they planned to hire a more diverse workforce.

However, hospices most frequently cite financial constraints and workforce limitations as leading roadblocks to their diversity, equity and inclusion efforts, NHPCO told Hospice News.

Trust, however, remains at the crux of improving access among underserved populations, according to NHPCO. Establishing trust among historically marginalized groups requires dedication to building community relationships and structuring different care models around unmet needs, NHPCO representatives said.

“Improved utilization of hospice and palliative care services and equitable access occurs with open, transparent willingness to continuously evaluate diversity and inclusion programs,” NHPCO representatives said. “This takes time, intention, and effort.”