Priorities for 'out-of-hours' home-based palliative care for professionals, patients, and family caregivers: A...

People with advanced illness at home, and their families, rely on 'out-of-hours' services provided by community, primary and specialist palliative care services. Home is commonly expressed as the preferred place to be cared for and die, and an increasing proportion of people are dying at home, but what constitutes 'good' care is poorly understood from the combined perspectives of healthcare professionals and patients and family caregivers.

To understand the convergence and divergence of the perspectives of healthcare professionals with those of patients and family caregivers, on priorities for home-based palliative care in the 'out-of-hours' period in the UK.

Qualitative interview study. Two data sets integrated and analysed using reflexive thematic analysis.

20 community palliative care services.

1) community, primary and specialist healthcare professionals (n = 39), and 2) patients and family caregivers, current and bereaved (n = 47).

Four common themes across participant groups, with varied interpretation. 1. 'Good' care: defined by professionals in transactional terms of being timely, responsive and accessible. Conversely, patients and caregivers valued the quality of relational compassionate care; 2. Care coordination, integration and continuity: professionals emphasised the importance of shared patient records, while for patients and caregivers, feeling known to the service fostered a sense of safety; 3. Access to medicines: professionals spoke of the challenges of accessing, prescribing and administering medicines out-of-hours, while caregivers described the hard work of forward planning for out-of-hours; 4. Timely, responsive and accessible care within stretched resources: professionals suffered moral distress when struggling to provide high-quality care, conversely patients and family caregivers reported reluctance to 'bother' services out-of-hours.

Priorities for palliative and end-of-life community care out-of-hours centre on good relational care and support for staff to deliver both relational and transactional care. Distress for healthcare professionals when unable to provide the level of care needed is marked in the out-of-hours period, with timely care often impeded by resource constraints. Prioritisation of systems for care coordination between specialist and community and primary care teams is required to meet patient priorities of timely management of distressing symptoms and access to medicines. Systematic assessment of the support needs of family caregivers is essential for them to manage care out-of-hours when professional care is often limited.