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Comparative study of clinicians’ and family members’ perceptions of patients’ end-of-life experiences
  1. Kozue Suzuki1,
  2. Tatsuya Morita2,
  3. Masanori Mori2,
  4. Yukari Azuma1,
  5. Hiromi Funaki3,
  6. Koji Amano4,5,
  7. Kengo Imai6,
  8. Keiko Tanaka1,
  9. Yoshiyuki Kizawa7,
  10. Satoru Tsuneto8,
  11. Yasuo Shima9,
  12. Kento Masukawa10 and
  13. Mitsunori Miyashita10
  1. 1Department of Palliative Care, Tokyo Metropolitan Cancer and Infectious Diseases Center Komagome Hospital, Bunkyo-ku, Tokyo, Japan
  2. 2Division of Palliative and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Japan
  3. 3Department of Palliative Care, Hiroshima Kyoritsu Hospital, Hiroshima, Japan
  4. 4Department of Palliative Medicine, National Cancer Center Hospital, Chuo-ku, Japan
  5. 5Department of Palliative and Supportive Medicine, Graduate School of Medicine, Aichi Medical University, Aichi, Japan
  6. 6Seirei Hospice, Seirei Mikatahara General Hospital, Hamamatsu, Japan
  7. 7Department of Palliative and Supportive Care, Faculty of Medicine, University of Tsukuba, Tsukuba, Japan
  8. 8Department of Human Health Sciences, Graduate School of Medicine, Kyoto University, Kyoto, Japan
  9. 9Department of Palliative Medicine, Tsukuba Medical Center Hospital, Tsukuba Medical Center Foundation, Tsukuba, Japan
  10. 10Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
  1. Correspondence to Dr Kozue Suzuki, Department of Palliative Care, Tokyo Metropolitan Cancer and Infectious Diseases Center Komagome Hospital, Bunkyo-ku, Tokyo, Japan; kozue_suzuki{at}tmhp.jp

Abstract

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
  • bereavement

https://doi.org/10.1136/spcare-2022-003883

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    Footnotes

    • 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.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.