Background People at the end of life frequently receive care from a variety of teams and organisations. Continuity of care is particularly important for patients at the end of life and a lack of information sharing is often cited as a barrier to the provision of good quality end of life care.
Nationally, the policy drive to address this has been the development of electronic palliative care coordination systems (EPaCCS). The purpose of EPaCCS are to provide a shared local record for health and social care professionals, with key information about an individual approaching the end of life, including their expressed preferences for care.
Quantitative studies have shown striking differences in place of death with EPaCCS, but are potentially biased and confounded. Technology in isolation is not guaranteed to bring benefit and the initiation of an EPaCCS relies on healthcare professionals opening conversations about death and dying. Whether EPaCCS facilitate such conversations is unclear.
We do not know if EPaCCS improve practice or simply document what is already taking place. Little research has been undertaken to understand how, and by whom, EPaCCS are being used and whether EPaCCS support patients’ end of life wishes. Rigorous evaluation and research is needed to investigate to what extent EPaCCS influence services working together to support ‘a good death’.
Aims Describe the socio-demographic characteristics of patients who die with an EPaCCS record, their cause and place of death and compare these with patients who die without an EPaCCS record. Explore the impact of an EPaCCS on the experience of receiving end of life care for patients and carers, and understand healthcare professionals’ views and experiences of utilising an EPaCCS to provide coordinate care.
Methods This is a mixed-methods study, taking place in the Bristol, North Somerset and South Gloucestershire area, within a realist evaluation paradigm.
Results and conclusions Work in progress – data collection starting September 2018.
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