Hidden work and blurred boundaries: a qualitative study of how community nurses navigate and adapt injectable medication processes to provide timely end-of-life symptom control

Abstract Background With rising numbers of people dying at home, often with complex multimorbidity, community healthcare professionals are increasingly responsible for providing end-of-life care. This care is usually led by community nurses, many of whom do not have specialist palliative care training. A core part of their role is providing end-of-life symptom control using injectable medications prescribed ahead of need and stored in patients’ homes. However, cross-organisational systems around injectable medication processes are complex and time consuming. We aimed to explore community nurses’ perceptions of their changing roles in end-of-life care and how they navigate injectable medication processes to provide timely symptom control. Methods A qualitative study using in-depth interviews with community nurses undertaken in two counties in England. Data were analysed using reflexive thematic analysis. Results Fifteen community nurses took part. Nurses’ roles in end-of-life care were characterised by increasing scope and complexity, making it challenging to offer the holistic care they wanted to. Using their practical knowledge and wisdom, nurses navigated and sometimes adapted (changed) challenging injectable medication processes to ensure timely symptom control for patients. This involved considerable additional hidden work conducted on behalf of patients, families, nursing colleagues and general practitioners. Some nurses appreciated the autonomy and independence they had in navigating and adapting injectable medication processes. However, others perceived their expanding remit in end-of-life care and the increasingly blurred boundaries between their role and that of general practitioners as sources of anxiety and professional risk. Conclusions To ensure community nurses feel confident, empowered and professionally safeguarded to take on this multifaceted and increasingly complex work, further experiential learning with palliative care colleagues is required, in addition to assured support from regulatory organisations. Exploring how other healthcare professionals, including pharmacists and paramedics, alongside families, navigate and adapt injectable medication care can make other hidden work visible and identify priority areas for system-wide improvements.