ABSTRACT
Background/aims: COVID-19 has had a devastating impact on care homes, their residents and families, and staff. More than 40,000 UK care home residents have died from COVID-19;many more have experienced symptoms and distress. The aim was to explore experiences of care home staff of providing palliative and end-of-life care (PEoLC) during COVID-19, and make policy recommendations. Methods: Mixed methods study comprising 1) Online survey (in REDCap) of UK care home staff, identified through established networks. The survey was developed from a rapid literature review and included structured and free-text data. 2) Qualitative interviews with care home staff (identified from 1);findings analysed thematically to identify policy recommendations for improving PEoLC. Results: 107 survey responses from across UK;57 (53%) had onsite nursing care. 72 (67%) experienced COVID-19 outbreaks;48 (45%) reported staff shortages;75 (70%) reported staff stress. Challenges included assessing and managing physical symptoms (17, 16%), spiritual needs (26, 24%) and social/family needs (56, 52%). 26 (24%) reported quality of PEoLC fluctuated during the pandemic. 26 qualitative interviews were carried out. Themes: 1/ Workforce. Staff experienced multiple pressures (more deaths, staff sickness/bereavement, new roles), mitigated by adapting working patterns and living arrangements, providing emotional and practical support, and fostering a sense of partnership. 2/ Integration. Integration with GPs, palliative care teams, pharmacists and community nurses varied. Digital communications, shared records, hotlines, regular meetings and strong relationships facilitated good PEoLC. 3/ Legacy. Positive outcomes emerged from the rapid changes made, including a sense of empowerment, pride and confidence among staff. This was undermined by feeling under-recognised and undervalued. Conclusions: Improving PEoLC in care homes is a priority. Recognition of care home expertise, and improved integration with community services, are essential.
ABSTRACT
Background: The COVID-19 pandemic has led to excess mortality globally. Understanding change in place of death during the pandemic is needed to help guide resource allocation and support for end-of-life care. Aims: To analyse the patterns of mortality and place of death in UK (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic. Methods: Descriptive analysis of UK mortality data between March 2020 and February 2021. The weekly number of deaths in each nation was described by place of death using the following definitions: (1) Average deaths estimated using five years of historical data (2015-19);(2) Baseline deaths up to and including expected deaths but excluding COVID-19 deaths;(3) Deaths where COVID-19 is mentioned on the death certificate;(3) Additional deaths not attributed to COVID-19. Results: During the analysis period, there were 743,172 deaths in the UK, of which 135,716 were COVID-19 related and 17,672 were additional non-COVID deaths. There was variation in mortality between the UK nations with Wales having the highest rate of COVID-19 deaths at 229 per 100,000 population and Northern Ireland the lowest at 141 per 100,000 population. Deaths in care homes increased above baseline levels during the first and second waves of the pandemic but fell below baseline between waves, increasing the most in Wales by 29%. Hospital deaths increased overall by as much as 13% in England but fell by 1% in Scotland. Deaths at home remained above average throughout the study period with an overall increase of between 40-41%. In England and Wales, 15-30% fewer people died in hospices compared to baseline. Discussion: The COVID-19 pandemic has changed where people die in the UK. Notably a sustained increase in deaths at home has been seen, with implications for planning and organisation of palliative care and community services. Examination of place of death in other countries with high COVID-19 mortality is recommended.
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. Methods: A web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks during September and October 2020. 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-oflife 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.