Electronic palliative care coordinating systems (EPaCCS) may not facilitate home deaths: A mixed methods evaluation of end of life care in two English counties

Abstract

Electronic palliative care coordination systems (EPaCCS) detail preferred place of death across health and voluntary sector boundaries. Quantitative studies suggest that individuals recorded on EPaCCS are more likely to die at home. This study aimed to explore this relationship between EPaCCS and home deaths. Patient records from EPaCCS were collected from 1 September 2011 to 29 February 2012, linked to death data and analysed using descriptive statistics. We interviewed 101 professionals, including community nurses, and employed framework analysis. Few eligible patients were entered on EPaCCS (9% North Somerset, 13% Somerset). Of those,

Impact of electronic palliative care coordination systems (EPaCCS) on care at the end of life across multiple care sectors, in one clinical commissioning group area, in England: a realist evaluation protocol

“…12 A more recent study challenges these Table 1 Programme theory for the EPaCCs study, comprising the 17 CMO statements that inform the programme theory, and the questions that will be used, in the focus group with the end-of-life board, to investigate each CMO statement assumptions, suggesting that the increase in home deaths could in fact be due to selection bias (few secondary care colleagues used the systems and therefore hospital deaths are not captured). 10 The findings of this study also underscore the importance of qualitative approaches, which can offer crucial insights into what is happening on the ground, away from broad claims of EPaCCS benefits arrived at solely through quantitative methods. Without understanding the experiences of patients and carers, together with the perspectives of HCPs, it is difficult to evaluate the effectiveness of EPaCCS.…”

“…Of approximately 8000 deaths occurring in the CCG area over the year of study, we expect around 10% (800 deaths) of patients to have an EPaCCS. 10 If the proportion of deaths occurring at home is expected to be 25% among those without an EPaCCS, we would have over 99% power to detect an absolute increase of 10% to 35% among those with an EPaCCS. The power would be about 84% if the proportion were increased by 5% to 30%.…”

“…5 8-10 These records are usually completed by the patients' general practitioner (GP) or community nurse, including patients' advance care wishes, and are accessible across multiple care sectors. 10 The purpose of EPaCCS is to provide a shared local record for health and social care professionals, with key information about an individual approaching the EOL, including their expressed preferences for care. In accordance with the Quality Statements in the NICE End of Life Care Standard for Adults, 11 the intent is for EPaCCS to support people approaching the EOL to receive consistent care that is coordinated effectively across all relevant settings.…”

Electronic palliative care coordination systems (EPaCCS): a systematic review

“…Fourteen of 26 articles comprised ‘expert opinion’ (editorials, commentaries and discussion papers) 5 15–27. Of the remaining 12 articles, nine were quantitative studies,6 7 28–34 two were qualitative35 36 and one was a mixed-method study though predominantly qualitative 37. All nine quantitative studies had an observational design: one was a service evaluation,33 two were descriptive cross-sectional studies,31 32 four were retrospective cohort studies without control groups6 7 29 30 and two were retrospective cohort studies with control groups28 34 (figure 2).…”

Special Collection Editorial: Mixed-Methods Research

“…As Downing (2017) suggests in her review of this study, after the addition of the qualitative phase, this foregrounded the unintentional impact of an exercise programme on women that might otherwise have been lost. Wye et al (2016) set out to investigate the relationship between the use of an electronic record system for coordinating palliative care and the likelihood of a patient experiencing a home death. Described as a service evaluation, the study avoided the need for NHS ethical approval, but the team obtained the necessary university approvals and study site governance and data security permission.…”