Underserved patient populations are facing a growing deficit when it comes to accessing quality, inclusive hospice care at the end of life.

Hospice care models have increasingly diversified to reach a broader range of patients with different beliefs, values and spiritual outlooks, but some providers see a long road ahead in the journey toward equitable access.

Despite advancing measures to improve health equity in recent years, two leading barriers continue preventing wider hospice access, according to Alicia Bloom, senior vice president of operations at Empassion Health.

“When we look specifically at hospice, we still have a lot of gaps to close [and] we continue to see two significant disparities,” Bloom said at the Hospice News ELEVATE conference in Florida. “One is [that] general access and utilization of hospice varies widely by racial groups and by geography. Secondly, we see in rural communities, especially if they are not adjacent to a metropolitan area, under-utilization and lack of access to hospice as well. Those are two significant areas that we have a lot of opportunity in the United States.”

Hospice News photo by TBAR Productions

Peeling back problematic barriers

Caucasians and individuals in urban areas have historically been the largest patient populations to access hospice care.

White Medicare decedents represented 86% of individuals who utilized hospice in 2023, reported the National Alliance for Care at Home. Black, Hispanic, Asian, North American Native and other racial and ethnic groups made up the remaining 14% of hospice decedents that year.

The Alliance report also found geographical differences, with hospice predominantly utilized by urban patient populations at a rate of 82.1% in 2023, compared to 17.9% among rural-based patients.

Health equity gaps have swelled in hospice care in recent years. Hospice utilization rates fell by 9.4% among Hispanic Medicare decedents in 2022, according to a report from the National Hospice and Palliative Care Organization, now part of the Alliance. Other groups also saw declines, including a 5.3% utilization drop among Black decedents as well as among North American Native and Asian American populations at 5% and 3.7%, respectively.

Greater awareness around health equity issues has been driving the needle toward improvement, said Victor Couzens, owner, founder and CEO of Mahogany Home Health and Hospice.

“On the positive side, we are becoming more aware of the discrepancies that exist in our health care system,” Couzens told Hospice News during ELEVATE. “When we look at the data … We’re in a place where we’re beginning to be able to get down to the minutia and realize even more from a geographical and racial standpoint that people are not monolithic. We’re beginning to get more data and more understanding about all of the people that we’re not reaching. And hopefully, as a result of that, we will begin to come up with some solutions that are going to move us beyond the conversation and help us to be able to actualize some of these things.”

Prolific misconceptions about hospice care serve as a main barrier curbing improved health equity, according to Dr. Claritza Rios, chief medical officer of By the Bay Health. These misunderstandings have abounded since the inception of the Medicare Hospice Benefit, but have taken on new forms in recent years amid program integrity issues, Rios stated.

Fraudulent operators in the hospice space have integrated a host of unscrupulous marketing strategies that target some of the most vulnerable underserved groups, she said. Multiple reports of unethical or illegal marketing practices have surfaced, particularly in four hotbed states of Arizona, California, Nevada and Texas that have seen rising instances of fraud, waste and abuse.

Fraudsters in some regions have increasingly approached seniors attending activities such as bingo at their church or local community centers, offering financial incentives to enroll in hospice care, often without knowing how their information would be utilized. Scammers have also targeted homeless populations, methadone clinics and seniors at casinos and other known areas where older adult populations often congregate.

These tactics have exacerbated misperceptions and mistrust about hospice care, according to Rios.

“We have a marketing problem in hospice,” she told Hospice News during the conference. “We’ve had some bad players target communities. If we have a predatory hospice in our community and people had bad care, then obviously this will [have] a huge ripple effect. Community-based organizations are being pulled in to help with care that we can trust in the health care system as people of color. How we’re perceived is half the battle.”

Hospice News photo by TBAR Productions

Systematic changes needed

All too often patients receive hospice care in the final days or weeks of life rather than accessing these services throughout the six-month benefit period. This trend is even more prolific among underserved patients who tend to receive late hospice referrals, according to Bloom.

Clinicians across the health continuum lack exposure to hospice care during the course of their medical training, posing a particular detriment of access among minority groups, she stated. Greater awareness around hospice and education about goals-of-care conversations is needed, Bloom indicated.

“We have not come very far in the last two decades around providers and physicians being able to identify when patients are approaching the advanced stages of their illness,” Bloom said. “That opportunity is there and something we have to solve for, whether in physician or nursing training. There is that gap and mistrust of the system, and even if we make an effort to have those conversations, can they be received? Provider education about how to help patients access hospice is something that we need to continue to take on.”

Building up local collaborative partnerships with a diverse range of community organizations is also key, according to Rios. Community collaborations are a significant part of reaching patients upstream in their illness trajectories so that they have a fuller understanding about their end-of-life care options, she added.

A cultural shift is needed to make waves of systematic change, Rios added.

“We need to really engage in truly systematic change to ensure that people buy into what we’re telling them as a plan of care,” Rios said. “A little bit of culture change can help hospice. Many minority communities often feel that we’re taking things away. And in end-of-life care we are discontinuing things that are no longer helpful, but that doesn’t necessarily align with what they’ve been experiencing all their life. We need to get upstream. [Also,] family support affects Black and Brown communities a lot more than folks that maybe can spend a little bit on caregiving. We can’t really do solid hospice care without supporting the home care piece.”

Greater representation in the hospice workforce can also go a long way toward systemic improvement, according to Couzens. Having an employee and leadership base that is representative and inclusive of the diverse communities that exist in a hospice’s geographic service region can lead to better overall reach among underserved groups, he added.

Workforce diversity development can inspire positive organizational changes when it comes to cultural humility and understanding, Couzens said.

“It’s not only in workforce development, but the other is s-suite representation,” Couzens told Hospice News. “There are not a lot of people who look like me in a position as the point of the spear to be able to make these big changes. [It’s] having the cultural competency, but also the cultural humility in training up a workforce. Until the c-suite actually becomes more equitable and more representative of the patient populations that we’re looking to reach, we still are going to find ourselves having some challenges, because the reality is, everybody has biases. That’s going to slow the cadence at which we’re able to see some real transformation happen.”