End-of-life preparedness and emotional suffering in patients and caregivers: Findings from an international cohort study spanning the period before and after death

Background: Preparing for the end of life is believed to help mitigate emotional suffering for both patients and their caregivers. However, empirical evidence on the emotional benefits of feeling prepared for death remains limited. Aim: This study uses data from the international iLIVE project to examine how perceived end-of-life preparedness is associated with emotional suffering among patients and their caregivers before and after death. Design: Data from a prospective cohort study from the iLIVE project (2020–2023) were analyzed. Participants were surveyed at baseline, 1-month follow-up, and where possible after the patient’s death. The association between end-of-life preparedness (ICECAP-SCM/CPM) and emotional suffering (ICECAP-SCM/CPM & HGRC) was examined using OLS regression models, adjusting for socio-demographic and health-related covariates. Setting/participant: Data came from 1041 patients and 496 caregivers across 11 countries, enrolled in the iLIVE project. Results: Feeling fully prepared for the end of life was significantly associated with lower levels of emotional suffering for both patients and caregivers. Among patients, preparedness was linked to reduced emotional suffering at baseline and follow-up. For caregivers, these associations were even more pronounced at baseline, follow-up, and after the patient’s death. Conclusions: Perceived preparedness for the end of life was associated with lower emotional suffering for patients approaching death and their caregivers, both during the illness and after bereavement. These findings suggest that encouraging end-of-life planning may support emotional well-being across the final phase of life and beyond.