Introduction: Electronic Palliative Care Coordination Systems (EPaCCS) are designed to document and share information about the care preferences of people living with life-limiting health conditions. These systems are used in health services in England to ensure that any health professional (HP) involved in that person’s care has access to the most up-to-date information. The intended benefits of EPaCCS have been framed around health service changes rather than patient outcomes. 

Aim: To address a significant evidence gap by exploring the views and experiences of patients and caregivers on the role of EPaCCS in care delivery.

Methods: Focus group discussions (n=10) and individual (n=13) interviews were conducted with patients and caregivers to explore perspectives on EPaCCS. Participants were recruited from four hospices, four patient support groups and a single aged care home in two regions of England. Thematic analysis was employed for data analysis. 

Results: Twenty-nine people with life-limiting health conditions and 14 caregivers of people with life-limiting health conditions consented to a focus group or interview. Uncertainty on the existence or sharing of EPaCCS records across health providers and distrust that support would be realised despite documentation of care preferences was common. Anxiety around the accuracy of recorded care preferences may be lessened by enabling patient access to their record.

Conclusions: Patient and caregiver perspectives indicate a lack of awareness of the presence and content of EPaCCS records. This study suggests that whilst EPaCCS seek to facilitate the delivery of personalised care, they are not understood or trusted by those they aim to support. Patient and caregiver-led adaptations to EPaCCS may be required, such as enabling patient access to view and edit their record. This could, for some, provide a route to validating records ensuring they continue to reflect their wishes.