End-of-Life Communication Between Providers and Family Caregivers of Home Hospice Patients in a Rural US-Mexico Border Community: Caregivers’ Retrospective Perspectives

Abstract

Introduction: Family caregiver–provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers’ experience relating to their end-of-life (EOL) communication and needs for hospice care transition. Methods: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data. Results: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver–provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient’s terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care. Conclusion: Timely EOL communication between caregivers and the providers is key to the patient’s optimal transition to hospice care. Providers need to be aware of the caregivers’ informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.