Beyond the Pandemic: End-of-Life Care Lessons From Latin America to Inform Future Health Emergencies

The COVID-19 pandemic exposed critical weaknesses in end-of-life care (EOLC), particularly in Latin America, where fragmented health systems and inequities intensified suffering.

To examine bereaved relatives' perceptions of EOLC during the pandemic in five Latin American countries, identify predictors of perceived adequacy, and assess alignment with the Core Outcome Set (COS) for best care for the dying person, a consensus-based set of patient-centered outcomes for end-of-life care.

A cross-sectional online survey of bereaved relatives was conducted in Argentina, Brazil, Chile, Colombia, and El Salvador (2021-2023) using an adapted iCODE questionnaire (Care of the Dying Evaluation). The primary outcome, perceived "adequate care" in the last 48 hours of life, was based on two iCODE items. Logistic regression identified associated factors.

Among 1,125 respondents, 51% perceived care as adequate, varying from 45% in Argentina and Colombia to 81% in El Salvador (P < 0.001). Independent predictors included personal care support (P < 0.001), emotional support (P < 0.001), trust in professionals (P < 0.001), symptom relief (P ≤ 0.001), effective communication (P = 0.012), and family involvement in decision-making (P = 0.045). COVID-19 restrictions were negatively associated with perceived adequacy. Alignment of our findings with the COS domains revealed persistent gaps in spiritual support, shared decision-making, and communication.

Perceptions of EOLC adequacy during the pandemic varied across Latin America. Relational, emotional, and physical aspects of care strongly influenced relatives' assessments. The COS offers a practical framework to identify and address care gaps. Its adoption could promote holistic, culturally sensitive EOLC, essential to improving care in the region.