Background 1403 completed responses were received from patients, families and professionals during the first Palliative and end of life care Priority Setting Partnership (PeolcPSP) survey. Most respondents gave detailed narrative accounts in response to the survey questions and some of these data were deemed outside the scope of the James Lind Alliance (JLA) protocol because no interventional question could be derived. Using a thematic analysis applied to the entire data set, we were able to explore the uncertainties, questions and experiences of the respondents to provide further research areas to supplement the interventional questions taken forward by the analysis carried out by the PeolcPSP. Discussions regarding expectations and beliefs around death and dying were a recurring theme within these data.
Method The 1403 survey responses were coded using NVivo 10 qualitative software and analysed thematically.
Results Responses were categorised under the sub-themes of prognostication, the dying trajectory, awareness of prognosis and talking about dying in both cancer and non-cancer conditions.
Respondents asked for clarification of the dying process including, how to identify dying patients, how to understand the dying trajectory, and how to talk about dying. Many respondents talked about the implications of awareness and preparedness, or lack of, in emotional and practical terms. Overarching these issues was a clear desire to unmask the mysteries and taboos around death and dying in society to reduce the stigma that patients and families feel.
Conclusions There is a clear need for a greater individual and societal awareness and acceptance of the dying process. Respondents struggled with uncertainty and preparedness, often with a lasting effect on the bereaved. The perception of death as a failure has a clear influence on decision-making and preparedness, and ultimately acceptance of the inevitable.
Further research is needed to raise awareness of the processes of death and dying, and towards improving prognostication and communication.
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