BACKGROUND: Death rattle is a frequently occurring symptom in the last phase of life. The experience of death rattle of relatives has been found to vary. It is unclear if treatment with medication is useful. The most fitting solution for this symptom is still under debate. AIM: This study aims to better understand the experience of relatives of their loved ones' death rattle. DESIGN: A qualitative interview study with a phenomenological approach was performed. Data were collected through semi-structured interviews which were audio recorded, transcribed and analyzed using qualitative content analysis. PARTICIPANTS: Nineteen family members of 15 patients were interviewed. RESULTS: Most relatives had experienced death rattle as a distressing symptom. Concerns about how long the rattling would last resulted in more distress. Experience of death rattle was less fierce when other symptoms such as pain or dyspnea prevailed. Hearing the sound of death rattle sometimes reminded relatives of previously witnessed dying trajectories, which seemed to increase their current level of distress. The experience of death rattle is not always influenced by the amount and quality of information given about the symptom. CONCLUSION: Death rattle is a stressful symptom and the experience of relatives is influenced by more factors than the sound itself. Communication and information alone seem inefficient to address relatives' distress. The best approach for dealing with this symptom is unclear. Further research needs to show if prophylactically given drugs may be helpful in its prevention.

Additional Metadata
Persistent URL dx.doi.org/10.1186/s40359-020-00431-3, hdl.handle.net/1765/127991
Journal BMC psychology
Organisation Department of Medical Oncology
Citation
Van Esch, H.J, Lokker, M.E, Rietjens, J.A.C, van Zuylen, C, van der Rijt, C.C.D, & van der Heide, A. (2020). Understanding relatives' experience of death rattle. BMC psychology, 8(1). doi:10.1186/s40359-020-00431-3