End-of-life experiences: a multicenter longitudinal study on characteristics and prevalence in terminally ill patients.
7 affiliations
- 1Hospice & Palliative Care Buffalo, Cheektowaga, New York, USA. [email protected].
- 2University Network for Research in Spirituality, Federal University of Bahia (REUPE/UFBA), Salvador, BA, Brazil. [email protected].
- 3Research Group on Palliative Care and Quality of Life (GPQual), Barretos Cancer Hospital, Barretos, SP, Brazil. [email protected].
- 4Research Program on Non-Ordinary Experiences and Altered States of Consciousness, Institute of Psychiatry, Clinical Hospital, University of São Paulo, (PROEXP-IPq - HCFMUSP), São Paulo, SP, Brazil. [email protected].
- 5Research Group on Palliative Care and Quality of Life (GPQual), Barretos Cancer Hospital, Barretos, SP, Brazil.
- 6Division of Perceptual Studies, University of Virginia, Charlottesville, VA, USA.
- 7Research Center in Spirituality and Health (NUPES), School of Medicine, Federal University of Juiz de Fora (UFJF), Juiz de Fora, MG, Brazil.
Abstract
Background
Evidence suggests that transcendent end-of-life experiences (ELEs) are common and impact the dying; however, there is a shortage of longitudinal studies.Objectives
To evaluate the prevalence and characteristics of ELEs in terminally ill patients.Methods
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.Results
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.Conclusions
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.
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BibTeX
@article{silva2026endoflife,
title = {{End-of-life experiences: a multicenter longitudinal study on characteristics and prevalence in terminally ill patients.}},
author = {Taís Oliveira da Silva and Bianca Sakamoto Ribeiro Paiva and Bruce Greyson and Alexander Moreira-Almeida},
journal = {BMC palliative care},
year = {2026},
month = jul,
doi = {10.1186/s12904-026-02244-4},
url = {https://europepmc.org/article/MED/42894210},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - End-of-life experiences: a multicenter longitudinal study on characteristics and prevalence in terminally ill patients.
AU - Taís Oliveira da Silva
AU - Bianca Sakamoto Ribeiro Paiva
AU - Bruce Greyson
AU - Alexander Moreira-Almeida
PY - 2026
DA - 2026/07/01
JO - BMC palliative care
DO - 10.1186/s12904-026-02244-4
UR - https://europepmc.org/article/MED/42894210
AB - Background Evidence suggests that transcendent end-of-life experiences (ELEs) are common and impact the dying; however, there is a shortage of longitudinal studies.Objectives To evaluate the prevalence and characteristics of ELEs in terminally ill patients.Methods 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.Results 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.Conclusions 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.
SN - 1472-684X
ER -