Atonia Garret at the 2023 Palliative Care Conference.
A problem with myriad causes
The list of reasons behind the disparities can be just as diverse as the communities themselves, Garrett said.
Some geographic regions may not have enough health care facilities or providers to meet demand, while others face economic and financial barriers, she explained. Communities may experience all these factors simultaneously, Garret added.
Some societal forces have placed underserved populations “in a position systematically where we don’t give them the services they need,” she said.
Part of the systematic breakdown involves a lack of a diverse, trained hospice and palliative care clinical workforce equipped to handle and address a variety of specialized care needs, according to Katie Leonard, palliative care nurse and director of pediatrics at California-based Anchor Health.
“In hospice and palliative care, there often isn’t something that is pediatric specific,” Leonard said at the conference. “So they are a population that doesn’t get specialized care that’s appropriate for their age automatically. It really depends on location, age, diagnosis and all sorts of factors. It can be hard to find specialists that are trained in pediatric hospice and palliative care, so access to them can be difficult.”
An estimated 90% of children worldwide in need of palliative care services never receive them, according to a 2022 study from the Imperial College London’s Institute of Global Health Innovation (IGHI).
Hospice providers have increasingly recognized a need for improved access among youth populations. About 9% of nearly 330 hospice professionals indicated that they planned to launch pediatric end-of-life care services for the first time this year during 2023 in this year’s Hospice News Outlook Survey, prepared in collaboration with Homecare Homebase. This is a small spike from 6% compared to last year’s survey.
Within pediatric populations are similar disparities that ripple across underserved communities at large, further complicating hospices’ attempts to define and reach patients and their families with support, Leonard stated.
This includes children who live among rural populations and non-English speaking communities, she explained.
“We also have a wide community of underserved populations that are also in pediatrics, so they’re multi-layered in their underserved status,” Leonard said. “We may have people who are non-primarily English speaking or people in low-income areas. There are a lot of different levels of underserved.”
Overall African Americans, Asians and Hispanics combined made up less than 20% of all Medicare hospice patients in 2018, while Caucasians represented the remaining 80%, the National Hospice and Palliative Care Organization (NHPCO) reported.
Language can hinder access for many of these patients, particularly among Latino families. In an NHPCO/Transcend Strategy Group survey earlier this year, 52% Hispanic, non-native English speaking respondents said this was their biggest barrier.
Mistrust also topped the list of leading disparities among underserved patients, such as LGBTQ+ communities and people of color. 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.
Dispelling myths and misconceptions
Misconceptions, misunderstandings and lagging awareness also represent barriers to hospice.
Fewer Black (39%) and Latino (41%) respondents were aware that hospice is a Medicare benefit, compared to 52% of White respondents, the NHPCO/Transcend research found.
Ramping up community education services could give hospices better insight and access to underserved groups, according to Hospice of Acadiana CEO Keith Everett.
“The biggest barrier is around community education, which as providers we think we do very well but I don’t think we do – especially if you’re looking at focusing on health literacy,” Everett said. “We think about health literacy [and] how we are actually educating our patients and families related to hospice and palliative care medicine. Are you taking that part into consideration of what you’re accurately and actually communicating to them and if they have a lack of understanding?”
The Lafayette, Lousianna-based hospice provider recently collected patient data from across its service region. In its research, the organization discovered that more than half of its census were African Americans with less than a high school level of education, Everett stated. Additionally, more than 85% of these patients had caregivers with the same level of education, he said.
Services that focus on social determinants of health can also provide a window into underserved community needs, he added.
Having services that provide meal deliveries, transportation to medical appointments and technology assistance to patients can give hospices a greater chance at paving access points, especially in rural and lower-income regions, Everett indicated.
Ultimately, data will play a crucial role in how well hospices can find and support underserved groups, according to Garrett.
“The biggest concern is getting all the data that keeps up with it and the measurement of all these things to hold people accountable in implementing equitably and appropriately,” she said.
Hospice, Palliative Providers Strategize to Reach Underserved Communities