Defining End-of-Life Preparedness: A Dyadic Qualitative Study of Hispanic Patients with Advanced Breast Cancer and Their Caregivers.

Background/

Objectives

End-of-life (EOL) preparedness remains critically understudied among Hispanic patients with advanced breast cancer and their patient-caregiver dyads, despite evidence that preparedness significantly influences quality of life, care decisions, and caregiver well-being. This study aimed to explore how Hispanic patient-caregiver dyads conceptualize and experience EOL preparedness.

Methods

A qualitative descriptive design was employed, guided by the Dyadic Cancer Outcomes Framework, which highlights patient and caregiver characteristics, relationship processes, individual and relational outcomes, the cancer care trajectory, and the broader social context as interrelated influences on dyadic experience. Semi-structured individual interviews were conducted in Spanish with 11 metastatic patient-caregiver dyads (n = 22 participants) recruited through Ponce Health Sciences University and the Ponce Research Institute in Puerto Rico. Data were analyzed using codebook thematic analysis in NVivo 15, with themes interpreted through the framework's components.

Results

Six interdependent themes of EOL preparedness were identified: psychological and emotional, spiritual, informational, practical, physical, and caregiver role preparedness. Spiritual preparedness, grounded in faith, prayer, and surrender to divine will, functioned as the foundational axis organizing all other themes. Preparedness was dynamic and turning-point-driven, challenged anew at each stage of disease progression. Financial vulnerability, caregiver invisibility within formal care systems, and insufficient anticipatory information were identified as primary barriers. Family support and faith communities were the most consistently cited facilitators.

Conclusions

The findings yield the first grounded, dyadic conceptualization of EOL preparedness with Hispanic advanced breast cancer patient-caregiver dyads. We propose a formal definition positioning preparedness as a dynamic, multidimensional, relationally embedded, and spiritually anchored process that is fundamentally interdependent between patient and caregiver. These results directly inform the development of a culturally tailored, dyadic EOL preparedness intervention for this underserved population.