Objective End-of-life experiences (ELEs), such as deathbed visions (DBVs), have been reported worldwide. However, ELEs have rarely been discussed in clinical practice, possibly because of the different perceptions of ELEs among clinicians and families. Therefore, this study aimed to investigate the differences in perception regarding ELEs, especially DBVs, between clinicians and families.
Methods We conducted a multicentre, prospective and observational study with patients with cancer. After the patients’ death, clinicians recorded their perceptions of patients’ ELEs during the palliative care unit admission, and bereaved families responded to a questionnaire about ELEs. The primary outcome was the frequency and concordance of DBVs from the perspective of bereaved family members and clinicians. The second outcome was each group’s frequency of terminal lucidity and terminal coincidence.
Results The study included 443 patients. DBVs were reported more frequently by family members than clinicians (14.0% vs 2.7%, p<0.001). Among family members, terminal lucidity and terminal coincidence were observed at 7% and 7.9%, respectively, while only one case each was reported by clinicians.
Conclusions Clinicians and family members may perceive ELEs differently. Enabling patients and their families to talk about ELEs would assist in optimising grief care.
- hospice care
- spiritual care
- terminal care
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Contributors KS contributed to the study design, data analysis and writing of this article. TM contributed to the study conceptualisation, methodology, supervision, writing (review and editing); and assisted with manuscript preparation. MMi contributed to the analysis of the results, writing (review and editing). MMo, YA, HF, KA, KI, KT, YK, ST, YS and KM contributed to the investigation and writing (review and editing).
Funding This study was funded by the Japan Hospice Palliative Care Foundation.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.
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