End-of-life experiences: a multicenter longitudinal study on characteristics and prevalence in terminally ill patients.

Abstract

Evidence suggests that transcendent end-of-life experiences (ELEs) are common and impact the dying; however, there is a shortage of longitudinal studies. To evaluate the prevalence and characteristics of ELEs in terminally ill patients. This multicenter longitudinal mixed‑methods study collected demographic, clinical, and ELE‑related data-including prevalence, content, and comfort/distress ratings-from patients with a Palliative Performance Scale (PPS) ≤ 50% across three palliative care units in Brazil. Data were gathered through repeated interviews until death, discharge, or ongoing hospitalization by the study's end. Descriptive statistics were performed. Among 85 patients, 52% were female (44) and mean age was 61 (range 28-93); religiosity/spirituality was common (63% moderately/very religious, 98% believed in God, 65% in afterlife). Functional status declined progressively during follow‑up, with mean PPS decreasing from approximately 40 early in observation to 10 near death. ELEs were reported across varying levels of impairment. Of these patients, 34% experienced ELEs, with a median interval of 29.5 days from the first ELE to death (range: 1-186 days). Nearly half of the ELEs (49%) occurred during sleep, and 80% were perceived as real. The majority of ELEs involved deceased loved ones (52%), with 36% being described as comforting and 27% as distressing. Additionally, 78% of ELEs were reported by non-delirious patients. ELEs exhibited consistent patterns in timing, phenomenology, and content, supporting the possibility that they represent an inherent feature of the dying process. Cultural and psychosocial contexts may shape both the interpretation of ELEs and their emotional valence.