Providers have increasingly recognized the importance of outreach as concerns about racial equity mount across the nation. A California hospice provider has launched a mobile resource unit to inform and educate people about end-of-life decisions and care in Spanish-speaking communities. Central Coast VNA created a Latino Mobile Resource Center to break down language and cultural barriers and bring hospice into a new light within their local area.
“As a community-based organization, we have to prioritize and remain viable within our community,” said Dwight Wilson, president and CEO of Central Coast VNA. “The Latino outreach is one of our efforts to connect with an underserved population and break down a lot of myths about what medical interventions can do.”
Located along the Pacific coast of California, nearly 60% of Monterey County is Hispanic or Latino and 14% of the overall population is over age 65, according to the U.S. Census Bureau. While representing more than half of the area’s residents, the Spanish-speaking community has largely been underserved by hospice providers due in part to language barriers and cultural misconceptions surrounding these services.
More than 82% of Medicare decedents who elected hospice in 2017 were Caucasian, according to the National Hospice & Palliative Care Organization (NHPCO). Comparatively, slightly more than 8% were African-American; 6.4% were Hispanic, and 1.7% were Asian. That year, only 0.4% of Medicare decedents were Native American.
To better demonstrate the benefits of hospice care, Central Coast VNA launched an outreach program in Nov. 2019, which expanded in July with additional locations. The Latino Mobile Resource Center is a customized van that brings resources about end-of-life care, services preparedness and planning directly into communities.
“There’s definitely a common misconception about what hospice care is for the Latino population here in California. It takes a lot of reassurance and a lot of education. The language barrier is a pretty big reason why they don’t fully understand what hospice services are. The word ‘hospice,’ translates to something completely different in Spanish-speaking countries and really throws a lot of people off. It’s defined more like a place where you send the elderly when they don’t have family or anybody to take care of them. People don’t like to ask for hospice care because they think it’s a negative feeling and that they’re going to be abandoned alone somewhere in a facility, isolated. But the top barrier is more of a trust issue,” said Central Coast VNA’s Latino Outreach Coordinator, Elizabeth Birruete. “Usually our Latino families are the ones that accept hospice services more towards the end of the journey when they’re getting really close because they know that once they accept it, that means their loved one is going to die and so they avoid it as much as they can. Other reasons include religious and cultural beliefs, as some people just don’t feel the need to ask for help when they need it. There’s a sense that bringing hospice in somehow interrupts that natural process of leaving things in God’s hands or dealing with a family member being ill by themselves.”
With funding in part by the Hospice Giving Foundation, the mobile unit traveled to three south Monterey County locations throughout the month of July and distributed educational materials about hospice, as well as advance care planning information.
“Our obligation as a fully-funded foundation is to really understand what the community needs are and how we can be more proactive together with people to find solutions,” said Siobhan Greene, president and CEO of the Hospice Giving Foundation. “Back in 2017, we researched how hospice services were being delivered and who was receiving them in our community. The reports indicated we were serving fewer of our population than similar counties in the state of California, and also lower than the national average, which brought up real concerns about what we didn’t know. We needed to know the reasons why and better understand the community. Working with partners like the VNA in this collaboration and having people who are so committed to this goal with us has really helped move things forward.”
Collaborating with Catholic churches and religious leaders, which are influential in these communities, the mobile unit has held local events that attracted more than 100 attendees to break down mistrust among faith communities. With artwork created by Linda Rios, hospice medical social worker for Central Coast VNA, the Latino Mobile Resource Center was designed to be inviting and culturally appropriate for Spanish-speaking communities with an image that represents “peace, calm, family unity and the cycle of life,” according to Birruete.
“The overall goal was for the community to see it as a positive thing that can help provide resources and connections to their needs,” Birruete told Hospice News. “There’s always somebody bilingual present. We wanted to establish and maintain a sustainable trust and presence with the unit where people are able to approach us comfortably. We wanted them to know they’re going to get the help and support that they need. The response from our Latino communities has been as we were hoping — very positive and approachable.”
The Latino mobile unit travels with resource materials, brochures, flyers about preparing advanced directives, information defining hospice versus palliative care, and connects people with community agencies that serve seniors. Additionally, assessment surveys are distributed to better understand the area’s Spanish-speaking residents and their specific medical and social determinant needs, along with end-of-life care goals. Questions include focus on areas such as preferred language, technological devices in the home, medical care needs, insurance coverage and legal support.
“There’s a lot of opportunities to explore how we can engage the community in such a way that they can make the right decision for them,” said Wilson. “The ultimate goal for our Spanish-speaking communities is to be able to understand what hospice care services are and the benefits that each family as a whole would receive when they have the services, not just the individual who is ill. We communicate that we’re all going to go through this journey at some point, but that they don’t have to go through it alone. There’s help and support available.”