"I Had Never Heard of This, It's All New to Me": Exploring Older Latinos' Understanding of Hospice and Experiences with Care

Background and Purpose: An established body of research has described Latinos’ low engagement in hospice care. However, the literature exploring terminally-ill Latino patients’ paths to and experiences with hospice is much more limited. What is more, the vast majority of studies exploring Latinos’ experiences with hospice have been conducted posthumously. As a result, little is known about Latino hospice patients’ understanding of hospice and expectations of care at the time of enrollment. This paper helps to fill this gap by describing how terminally-ill older Latinos, enrolled in hospice, came to learn about hospice, their understanding and expectation of the care, and experiences with the service.

Methods: Thirteen semi-structured interviews were conducted with terminally-ill, hospice-enrolled Latinos 65 or older, or their decision-making proxies. The sample is predominantly female (54% of all patients; 80% of proxies) and Mexican (77%). The average age of all patients was 82 years, and of proxies 54. Patients interviewed had an average of 7 years of education and proxies an average of 11 years. Providers from seven sites: four hospice agencies, one nursing home, and two hospital departments identified and referred study participants. Interviews elicited information regarding participants’ values, needs, and preferences related to health and end-of-life care; knowledge of options and of hospice; and services/supports needed and available to them. Interviews were transcribed verbatim and coded thematically using an inductive approach. The replicability of the themes was established by using a second coder to code a Spanish and an English transcript (15% of the data) and obtaining a high level of interrater reliability (k = 0.85). 

Results: Analysis revealed that migration patterns limited participants’ past exposure to aging and dying, and interactions with healthcare. Combined with language and health literacy challenges, participants had a limited or incorrect understanding of hospice, its range of services, and connection to their prognosis. Proxies and patients discussed accepting hospice as a way to access nursing services and medical supplies. Many participants were unaware of having a social worker or were not in regular contact with the social worker, and, when listing services they were receiving, no participant in this study listed social services. Despite accepting hospice, many described ongoing curative goals, unmet needs, and challenges coordinating care consistent with cultural and religious preferences. Most often, this was due to a lack of Spanish-speaking providers and breakdown in communication; most participants relied on non-clinical Spanish-speaking staff as their main hospice contact.

Conclusion and Implications: This study found that participants’ limited understanding of the range of hospice services, even once enrolled in hospice, impacted their ability to coordinate care and resulted in unmet needs. Findings highlight the importance of improving patient-provider language and cultural concordance as a way to improve communication and care. Improving awareness of end-of-life care options including hospice, among Latino communities, remains a need. Workforce developments are required in order to ensure Latino hospice patients have access to well-trained social workers who can provide comprehensive and culturally-appropriate education, needs assessments, and support.