Community end-of-life care during the COVID-19 pandemic: Initial findings of a UK primary care survey

Abstract Background Thousands of people in the UK have required end-of-life care in the community during the COVID-19 pandemic. Primary healthcare teams (general practice and community nursing services) have provided the majority of this care, alongside specialist colleagues. There is a need to learn from this experience in order to inform future service delivery and planning. Aim To understand the views of general practitioners and community nurses providing end-of-life care during the first wave of the COVID-19 pandemic. Design and Setting A web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks during September and October 2020. Method Responses were analysed using descriptive statistics and an inductive thematic analysis. Results Valid responses were received from 559 individuals (387 community nurses, 156 General Practitioners (GPs) and 16 unspecified role), from all regions of the UK. The majority reported increased involvement in providing community end-of-life care. Contrasting and potentially conflicting roles emerged between GPs and community nurses. There was increased use of remote consultations, particularly by GPs. Community nurses took greater responsibility in most aspects of end-of-life care practice, particularly face-to-face care, but reported feeling isolated. For some GPs and community nurses, there has been considerable emotional distress. Conclusion Primary healthcare services are playing a critical role in meeting increased need for end-of-life care in the community during the COVID-19 pandemic. They have adapted rapidly, but the significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics. How this fits in (4 sentences) This study provides insights into experiences of delivering end-of-life care in the community during the first wave of the COVID-19 pandemic from the perspectives of UK general practitioners (GPs) and community nurses. Services have changed and adapted rapidly to meet increased need in terms of both volume and complexity, with community nurses taking greater responsibility for most areas of palliative care clinical practice, and GPs undertaking more care planning conversations. While GPs and specialist palliative care services conducted more remote consultations, community nurses carried out face-to-face end-of-life care and reported a feeling of isolation. As the pandemic progresses, and the increased need for end-of-life care in the community persists, more effective service models and multi-disciplinary teamwork in primary care are urgently needed.