Advance care planning a bridge to hospice among Latin American communities
Early access to advance care planning can be a vehicle for greater health equity among underserved Latin American communities, according to recent research.
Early care planning can help build trust between providers and patients and families, recent study finds report from Compassion & Choices and the National Hispanic Council on Aging.
As with other demographic groups, palliative care utilization among Hispanic, Latino, and Latino populations is low compared to Caucasians.
Latino patients are more likely to die without receiving palliative care or even information about such services, the report says.
“We are used to not having culturally sensitive or appropriate information,” Patricia González-Portillo, Senior Director of National Latino Media at Compassion & Choices told the local news. “End of life guidelines allow families to face the dying process and die in a more serene and peaceful way because they have made the necessary preparations. Death is something that will also happen to all of us, and we must prepare for it.
Compassion & Choices, based in Oregon, is a national end-of-life care advocacy organization focused on strengthening health equity. Association researchers reviewed 58 studies published between 2018 and 2021 on these disparities.
The report was released in conjunction with Hispanic Heritage Month, observed until October 15, with the aim of improving education and awareness of hospice palliative care within this underserved community.
“There is a huge 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,” the researchers said. of Compassion & Choices in the report. “Providers do not raise issues with patients and loved ones sufficiently or, when they do, may do so in a way that does not reflect the individual’s religious beliefs or cultural values.”
Latinos represent about 15% of the total population of the United States, reported the American Hospice Foundation. According to the foundation, the demand for palliative care or care for serious illnesses is expected to increase significantly in the coming years.
Hispanics made up 6.7% of all hospitalized patients in Medicare in 2018, which is a small fraction of the 20% who were patients of color that year, according to the National Hospice and Palliative Care Organization (NHPCO). Caucasians made up the remaining 80%, NHPCO reported.
A common theme that Latin American communities identified as a barrier to hospice was the lack of clear, comprehensive, and culturally relevant communication from providers about their critical illness and end-of-life care options, researchers from Compassion & Choices.
According to Susanny Beltran, co-director of the Center for Behavioral Health Research & Training at the University of Central Florida College of Health Professions and Sciences.
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 supplier side, language and communication issues play a role. Language barriers make it difficult to build trust and engage in goal-of-care discussions that are broad and focused on understanding patients’ priorities and helping them choose services that align with those goals of care” , Beltran told Hospice News in an email. . “Given [Latino] cultural preferences for caring for family members and for dying at home, [hospice] is viewed negatively, and therefore not a service that families want to consider. There is a need to offer cultural interpretation as well as linguistic interpretation, when providing information about hospice.
For example, the word “hospice” in Spanish can translate to “something like an orphanage or asylum”, and thus leads to a common misconception that the hospice is a physical place rather than a service that will meet them where they lie, Beltran explained.
Beltran was among researchers who examined Latin American families’ decisions to accept palliative care in a study 2021 published in the American Journal of Hospice and Palliative Medicine. These results showed that a majority of a sample of 13 Latino patients did not fully understand the philosophy of care or the interdisciplinary nature of hospice.
Providers will need to step up their community outreach and education efforts among Latino communities to foster earlier access to care, including conversations about goals of care, the researchers of the 2021 study concluded.
To achieve this, some hospices will need to deepen their understanding of the culture of the communities they serve, including beliefs and traditions around death.
For example, a common practice in Latin American cultures is for the family to serve as caregivers for the dying instead of seeking outside medical, emotional, and spiritual care. Among the implications is that certain levels of palliative care services – such as respite care, general inpatient care and, to some extent, routine home care – are sometimes perceived to have less valuable in Latino communities, Beltran explained.
“The best thing hospice can do is partner with Latin American families and really explore what the family needs from them during this time,” Beltran told Hospice News. “It also requires them to educate families about the full range of support that hospice can offer.”
The ability to educate and engage with Latino families means hospices must have a diverse workforce with linguistic and cultural understandings, according to Beltran.
The data supports this theory.
Compassion & Choices researchers found that a lack of Hispanic, Latino, or Latino representation among healthcare workers was another common barrier to these services. Latino families who participated in some of the research indicated that they preferred to have prior discussions about care planning with clinicians from similar racial, ethnic and cultural backgrounds.
“Given the expected changes in the growing number of older Latinos, it is crucial that hospices focus on improving their ability to be a resource for Latino families,” Beltran said. “That means preparing their workforce to work with Latino families and making concerted efforts to increase the diversity of their workforce and have Latinos on their staff. Patient-provider language and racial concordance have been found to improve perceptions of quality of care.