Background Discomfort talking about death and dying inhibits advance care planning (ACP) conversations. This survey aimed to raise awareness of end of life care (eolc) across home (community), hospices and NHS hospitals in Somerset and to explore staff and volunteers’ views about talking about dying. Respondents were encouraged to think beyond the patient-clinician relationship and consider how they interact with their families and communities when considering eolc.
Methods Staff and volunteers working in 2 district general hospitals, community services and 2 hospices were invited to complete an online survey during Dying Matters week (May 2019). Volunteers also encouraged completion of the survey on an ipad. The survey questions explored: most common worries for people at eol; attitudes towards talking about death and dying with other people (colleagues/patients/own family/friends); how much was known about ACP; perceived education needs. Free text data was extracted into word clouds and 10 point linear scale responses analysed using excel.
Results 58% of 1045 respondents were staff with clinical responsibilities. The 3 most frequently-used words around worries at eol were: family, pain, leaving. 20% were not comfortable talking with another person about dying, with similar distribution of responses from clinical and non clinical respondents. They were all more comfortable talking with colleagues. 44% of respondents said they knew little or nothing about ACP with non clinical respondents having less knowledge. More than half wanted training to develop skills to talk about dying, including 61% nurses and doctors.
Conclusions Care of the dying is not the exclusive domain of clinical staff. More dying people need to have opportunity to talk about what is important to them and their future. Empowering people through education and training (clinical/non-clinical/staff/volunteers) in their ‘outside-work’ lives to have conversations about ‘the future’ is fundamental to achieving sustainable quality improvements in eolc.
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