EPaCCS: Do they facilitate a 'good death'?
Research type
Research Study
Full title
Electronic Palliative Care Coordination Systems (EPaCCS): Do they facilitate a 'good death' - A realist evaluation
IRAS ID
241515
Contact name
Lucy Pocock
Contact email
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
It is important that a patient with an advanced, life-limiting illness should be offered the opportunity to talk to their doctor or nurse about how they wish to be cared for at the end of their life. To ensure continuity of care and avoid the need for patients and their carers to repeat these conversations, this information needs to be shared with other healthcare professionals (HCPs) who might become involved in the patient’s care.
Electronic Palliative Care Co-ordination Systems (EPaCCS) aim to do just this. They are electronic clinical records that are designed to enable a patient’s preferences for their end-of-life care (such as where the patient wishes to die and how they would like to be cared for), to be recorded and shared. They are typically completed by the patient’s doctor or nurse and can be accessed by all HCPs involved in caring for the patient. This includes out-of-hours doctors, ambulance services, community nursing teams, hospital staff, hospice and palliative care teams.
EPaCCS were first developed in 2009 and they are now in use across the UK, although there is no standardisation of their format or the way in which they are implemented. To date very little research has been carried out to understand how, and by whom, EPaCCS are being used and, perhaps more importantly, whether EPaCCS are enabling HCPs to support patients’ end-of-life wishes.
The aim of this study is to understand the impact of EPaCCS on the experience of end-of-life care for patients, their carers and associated HCPs in the Bristol, North Somerset and South Gloucestershire (BNSSG) area. The study team will analyse routinely collected data to understand the care patients have received and will speak with HCPs, patients and their carers to understand their personal views and experiences.It is hoped that the findings from this study will support HCPs to ensure that patients’ wishes are accounted for in their end-of-life care. This has the potential to benefit many of the 8,000 patients who die in the BNSSG area each year, by facilitating better coordination of care, which in turn may lead more people to die in their preferred place and avoid unnecessary hospital admissions. The results will also inform the ongoing development of EPaCCS nationally.REC name
South West - Frenchay Research Ethics Committee
REC reference
18/SW/0198
Date of REC Opinion
11 Oct 2018
REC opinion
Further Information Favourable Opinion