Advance Care Planning a Bridge to Hospice Among Latino Communities

Early access to advance care planning can be a vehicle for greater health equity among underserved Latino communities, recent research has shown.

Early advance care planning can help strengthen trust between providers and patients and families, according to a recent report from Compassion & Choices and the National Hispanic Council on Aging.

As with other demographic groups, hospice utilization among Hispanic, Latino and Latinx populations is low in comparison to Caucasians.

Latino patients are more likely to die without receiving hospice care or even information about these services, the report indicated.

“We have a history of not having information that’s culturally sensitive or appropriate,” Patricia González-Portillo, senior national Latino media director at Compassion & Choices told local news. “End-of-life directives allow families to cope with the process of death and dying in a more serene and peaceful way because they’ve made necessary preparations. Death is something that’s also going to happen to all of us, and we need to prepare for that.”

Oregon-based Compassion & Choices is a national end-of-life care advocacy organization focused on building health equity. Researchers at the nonprofit examined 58 studies published between 2018 and 2021 on these disparities.

The report was released in conjunction with Hispanic Heritage Month, observed through October 15, in an effort to improve hospice education and awareness among this underserved community, as well as several others.

“There is a tremendous lack of culturally competent communication (including communication in a patient’s preferred language) — or sometimes any communication — about end-of-life issues with patients and their loved ones,” Compassion & Choices researchers indicated in the report. “Providers either do not raise the issues sufficiently with patients and their loved ones or, when they are raised, may do so in a way that does not reflect the individual’s religious beliefs or cultural values.”

Latinos represent roughly 15% of the overall United States population, reported the American Hospice Foundation. Demand for hospice or serious illness care is expected to grow substantially in coming years, according to the foundation.

Hispanics made up 6.7% of all Medicare hospice patients in 2018, representing a small portion of the 20% who were patients of color that year, according to the National Hospice and Palliative Care Organization (NHPCO). Caucasians represented the remaining 80%, NHPCO reported.

A common theme that Latino communities identified as a barrier to hospice was a lack of clear, comprehensive, and culturally relevant provider communication regarding their serious illness and end-of-life care options, Compassion & Choices researchers found.

Providers have a ways to go when it comes to crossing communication and cultural barriers that stand between terminally ill patients and the care they need, according to Susanny Beltran, co-director of the Center for Behavioral Health Research & Training at the University of Central Florida’s School of Social Work.

Misconceptions about Latino cultural norms exist on the provider side, while misperceptions about hospice proliferate on the patient and family side of the coin, Beltran said.

“On the provider side, language and communication challenges play a role. Language barriers make it difficult to establish trust and to engage in goals-of-care discussions that are broad ranging and focused on understanding the patients’ priorities and helping them choose services that align with those care goals,” Beltran told Hospice News in an email. “Given [Latino] cultural preferences for caring for family members and for dying at home, [hospice] is seen negatively, and therefore not a service that families want to consider. There is a need to offer a cultural interpretation as well as a language one, when providing information about hospice.”

For example, the word “hospice” in Spanish languages can translate to “something along the lines of orphanage or asylum,” and thus results in widespread misconception that hospice is a physical place rather than a service that will meet them where they are, Beltran explained.

Beltran was among the researchers who examined Latino family decisions to accept hospice care in a 2021 study published in the American Journal of Hospice and Palliative Medicine. Those findings showed a majority of a sample of 13 Latino patients did not fully understand the philosophy of care or interdisciplinary nature of hospice.

Providers will need to step up community outreach and education efforts among Latino communities to foster earlier access to care, including goals-of-care conversations, the researchers of the 2021 study concluded.

To achieve this, some hospices will have to deepen their understanding of the culture of the communities they serve, including beliefs and traditions around death.

For example, a common practice in Latino cultures is for the family to serve as caregivers for the dying as opposed to seeking outside medical, emotional, or spiritual care. Among the implications is that some levels of hospice services — such as respite care, general inpatient care and to some extent, routine home care — are sometimes perceived as holding less value among Latino communities, explained Beltran.

“The best thing that hospice can do is to partner with Latino families and to truly explore what the family needs from them during this time,” Beltran told Hospice News. “This also requires that they educate families on the full range of support that hospice can offer.”

The ability to educate and engage with Latino families means that hospices must have a diverse workforce with language and cultural understandings, according to Beltran.

Data support this theory.

Compassion & Choices researchers found that a lack of Hispanic, Latinx or Latino representation among health care staff was another common barrier to these services. Latino families who participated in some of the research indicated that they preferred to have advance care planning discussions with clinicians of similar racial, ethnic and cultural backgrounds.

“Given the expected shifts in the growing number of older Latinos, it is crucial that hospices focus on improving their ability to be a resource to Latino families,” Beltran said. “This means preparing their workforce to work with Latino families, and making concerted efforts to increase the diversity of their staff and have Latinos on their staff. Patient-provider language and racial concordance has been found to improve perceptions of care quality.”