Background Community palliative care outside normal working hours is provided by both specialist palliative care professionals and primary/community health professionals. Understanding their experience of delivering care is important, not least in terms of impact on the quality of patient care (Maben, et al. Patients’ experiences of care and the influence of staff motivation, affect and wellbeing. Final report. NIHR Service Delivery and Organisation programme; 2012).
Aim To explore the experiences of professionals delivering community palliative care out-of-hours.
Methods Qualitative interviews were conducted with professionals providing community palliative care, purposively sampled by discipline, specialist/primary, and model of care. Data analysis used reflexive thematic analysis.
Results 28 interviews undertaken with 39 participants including specialist palliative care (n=21), primary/community care (n=15). Three main themes were: (1) staff distress, (2) over-stretched resources (3) moral comfort. Most examples of distress were in the context of struggling with over-stretched and limited resources, and being unable to provide the care that aligned with their professional values. When expressing satisfaction that care had been provided well (moral comfort) it was in relation to going ‘above and beyond’, or where they had more control over time spent with patients, and could deliver the care needed.
Discussion Professionals providing palliative care may have good strategies to deal with the distressing nature of their work, but organisational factors can increase distress (Goodrich, Harrison. Resilience: a framework enabling hospice staff to flourish in stressful times. Hospice UK, 2015), especially when resources (time, capacity, personnel) are insufficient. This constitutes ‘moral distress’ (being in a situation in which one is constrained from acting on what one knows to be right – Jameton. AMA J Ethics. 2017; 19(6): 617–628).
Conclusion Most experiences of moral distress for professionals stemmed from insufficient healthcare resources to manage care needs at the end of life. This was most evident for district nursing services. Service leads and commissioners must listen carefully to experiences of professionals trying to provide high quality care, as well as patients and families.
Funder: Marie Curie Research Grant MCRGS-20171219–8011