Prolific health disparities have driven hospices to implement various strategies to improve diversity, equity and inclusion among underserved patient populations. Some providers say the needle has much farther to go toward equitable access.

End-of-life care models have increasingly diversified to reach a broader range of patients with different beliefs, values and spiritual outlooks, according to Altonia Garrett, COO of Blue Ridge Hospice. Garrett is also executive director of the Virginia-based hospice’s Diversity, Equity, Inclusion and Belonging Committee.

Yet, hospice providers lack a full scope of understanding around the nuanced challenges impeding utilization and the ways to more effectively address unmet patient needs, Garrett said.

“It’s vital that care models are culturally sensitive, recognizing and respecting diverse beliefs and practices surrounding death and dying,” she told Hospice News. “The systemic discrimination and bias faced by marginalized groups can create significant barriers to accessing care. These communities often encounter lower-quality health care, compounded by racism and stigma, which can diminish their likelihood of receiving timely referrals to hospice services.”

Uncovering hospice barriers

Some individuals may be hesitant to engage with hospice services due to cultural perceptions, resulting in underutilization and missed opportunities for quality support, Garret said.

White Medicare decedents have long represented the vast majority of individuals utilizing the hospice benefit, though other racial and ethnic groups have seen improvement.

Hospice utilization rates rose by 4.1% among Hispanic populations in 2022, the largest increase across all minority groups that year, reported the National Alliance for Care at Home. An increase of 3.3% of North American Native Medicare decedents utilized hospice services that year, with rises among Black and Asian American populations at 1.9% and 1.8%, respectively, according to the Alliance report.

“[Inequities] shouldn’t be surprising to us, and what we as an industry need to figure out is how do we communicate with individuals sooner on their health care journeys to build that trust and make sure that they are able to access care,” Liz Fowler, president and CEO of Bluegrass Care Navigators, told Hospice News.

Researchers have increasingly dug into the leading barriers to equitable access, with these efforts expanding beyond racial and ethnic identities. The U.S. Centers for Medicare & Medicaid Services’ (CMS) has helped back these initiatives in part with research grants.

This year the agency awarded six educational institutions with a total of $1.4 million in minority research grants to support health equity research. The funding supports researchers at minority-serving institutions examining ways to address health care disparities affecting racial and ethnic minority groups, people with disabilities, members of the LGBTQ+ community, individuals with limited English proficiency, rural area populations, and patients adversely affected by persistent poverty or inequality.

Much of the research has historically focused on racial disparities and less on other aspects fueling inequities, a trend that needs to change in order to better understand the root causes, according to Fowler.

A growing number of studies have found that minority groups often report less satisfaction with the quality of care received, as well as a lack of pain and symptom management. Additionally, mistrust and varying religious and spiritual values are among the leading barriers to greater hospice utilization, according to a recent study analysis published in the American Journal of Hospice & Palliative Medicine.

Education is another pivotal factor in health disparities, Garrett added. Lower health literacy levels can prevent individuals from understanding their options for end-of-life care and the resources available to them, she stated.

A lack of supportive policies, particularly around Medicaid coverage for palliative care, has also exacerbated hospice inequities, according to Garret. More robust advocacy is needed to ensure that hospice care is more accessible and equitable, she said.

Improving equitable hospice access

Health equity issues have increasingly received a spotlight in evolving payment initiatives. The Center for Medicare & Medicaid Innovation (CMMI) in 2021 announced a “strategy refresh” that included focus on health care equity in payment model design.

One of the first models to use this approach was the Accountable Care Organization Realizing Equity, Access and Community Health (ACO REACH), which became effective in January. The model requires participating providers to develop a robust health equity plan that identifies underserved communities and designs initiatives aimed at measurably reducing disparities within their patient populations.

Investing in health equity has become imperative to a hospice’s sustainability, said David Turner, vice president of special projects and initiatives at St. Croix Hospice, which serves 10 Midwest states. Turner is also CEO and partner of Nashville-based Heart’n Soul Hospice.

A key investment area for hospices is diversifying their executive teams to encourage both greater representation and deeper understanding of the systemic barriers, he said during the Hospice News Elevate conference in Washington D.C.

“What I would like to see is more folks like myself in senior leadership roles within organizations for more health equity and diversity,” Turner told Hospice News. “We’re all about growing our census, but we also should look at who we’re hiring, where they are, what spaces they live and operate in.”

Hospices should leverage the depth of diversity among their interdisciplinary professionals and the various socioeconomic, cultural and educational backgrounds they encompass, according to Garrett.

Cultural factors cannot be overlooked in hospices’ inclusion efforts, as beliefs and practices regarding death vary widely across communities, Garrett said. Cultural competency training can be an avenue to foster stronger staff engagement around the leading issues they see among patients and their families to better address hospice inequities, she stated.

Additionally, hospices need stronger ties to referral sources for improved care coordination, Garrett said.

“Ongoing training for health care providers in cultural competence can foster better communication and trust between providers and patients,” she said. “Robust care coordination is also essential to prevent gaps in services and ensure that care plans are effectively implemented. This ensures that all team members are aligned in their approach, providing seamless support to patients and their loved ones.”

Reaching patients upstream in their health care journeys is crucial to improving disparities, a reason many hospices are ramping up their service diversification strategies, Fowler said.

Social determinants of health play a large role in accessibility, such as transportation and the availability of coordinated and timely care, she stated. End-of-life care decisions are also impacted by misconceptions about hospice alongside historic issues of mistrust in the health care system at large.

Improved health equity outcomes in part drove Kentucky-based Bluegrass Care Navigators to launch a PACE program in 2022. Much of the organization’s strategy involves being more present in minority communities, hiring more diverse staff and ensuring greater access to interdisciplinary and back-office teams, Fowler indicated. These efforts are designed to foster greater trust among underserved neighborhoods within its service region.

“Programs that are more upstream hopefully allow us to care for more individuals early on and make connections with more diverse communities earlier on in their care to then [be] a trusted health care provider,” Fowler told Hospice News.