Family distress related to death rattle and agonal breathing: a nationwide post-bereavement survey.

CONTEXT: Death rattle and agonal breathing are distressing for most families. Healthcare providers often explain these signs as a part of the natural dying process. OBJECTIVES: This study aimed to screen for post-traumatic stress disorder (PTSD) related to death rattle and agonal breathing among bereaved families, and to explore factors associated with positive screening results. METHODS: A nationwide, cross-sectional study was conducted using a self-administered questionnaire among bereaved families of patients who died of cancer at 140 palliative care units/inpatient hospices in Japan. PTSD was screened based on reported re-experiencing symptoms using the PTSD 3-Item Brief Screening. The degree of distress caused by death rattle and agonal breathing, whether they had received explanations of these signs, and how they perceived the signs were also assessed. RESULTS: Of the 1,068 available responses, 311 and 392 participants recognized death rattle and agonal breathing, respectively. The proportion screened positive was 26.9% for death rattle and 26.0% for agonal breathing among participants who perceived that these signs had been very distressing. Participants with greater distress due to death rattle and agonal breathing were significantly more likely to have PTSD symptoms (odds ratios: 2.07 and 1.89, respectively). The provision of an explanation was significantly associated with greater acceptance of these signs as a part of the natural dying process, but was not a significant variable for screening results. CONCLUSION: Bereaved family members exposed to death rattle and agonal breathing may have PTSD symptoms. Communication and care strategies to address family distress are needed.