Older Latinos’ End-of-Life Care Decisions: Responding to a Hospice Referral

A study exploring the decision-making experiences and reasons for choosing hospice care of terminally-ill older Latinos (or their legal proxies) was carried out using a qualitative approach. Providers from seven sites: four hospice agencies, one nursing home, and two hospital departments, identified and referred study participants. A final 13 (N=13) semi-structured, qualitative interviews were conducted with terminally-ill, hospice-enrolled Latinos 65+, or their decision-making proxies. Interviews were conducted in English or Spanish. Information was obtained regarding demographics; values, needs, and preferences related to health and end-of-life (EOL) care; knowledge of options and of hospice; and services/supports needed and available to them. Three themes: 1) Culture and Religion, 2) Migration and Health Literacy, and 3) Needs and Scope of Service Expectations helped illuminate how terminally-ill Latino families learn about hospice and choose to enroll in hospice care, including past experiences, knowledge, preferences, and expectations from care. Cultural and religious beliefs informed a preference for limited discussions and engagement in advanced planning, and for care in the home. Migration patterns limited participants’ 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 and its range of service, which impacted their expectations of care. Both proxies and patients discussed accepting hospice as a way to access services, primarily nursing care in the home, and not having other options available. Despite accepting hospice, many described having unmet needs as well as curative goals, and challenges coordinating hospice services. Findings indicate that hospice represents a way to access services, and not necessarily a philosophy of care that Latinos understand or seek at end-of-life.