Provision of palliative and end-of-life care in UK care homes during the COVID-19 pandemic: A mixed methods observational study with implications for policy.

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes. Materials and methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity. Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued. Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.

Care home staff experiences of palliative and end-of-life care in care homes during COVID-19

BackgroundCOVID-19 has had a devastating impact on care homes, their residents and staff. Over 37,000 UK care home residents have died from COVID-19;many more have experienced symptoms and distress (Scobie, 2021). There has been very limited examination of palliative and end-of-life care in care homes during COVID-19, or strategies to improve this.AimsTo examine the experiences of care homes in England of providing palliative and end-of-life care during the COVID-19 pandemic and make recommendations for policy.MethodsOnline survey (in REDCap) of care home staff with leadership responsibilities, identified through established networks. The survey included structured data and free-text comments on COVID-19 outbreaks, experiences of symptom assessment and control, and impact on workforce. The primary outcome was staff self-efficacy to provide palliative and end-of-life care (Phillips, Salamonson, Davidson, 2011).ResultsInterim analysis of 66 respondents found that most staff felt confident to provide palliative care, as measured by the self-efficacy scale (median 3.75, range 1-4 ). 51% (33/65) of respondents identified issues with staff shortages during the pandemic;38% (24/64) experienced changes in staff responsibilities;18% (12/65) experienced challenges in recognising that residents may be dying. 18% (12/65) of care homes did not allow visitors at the end-of-life, and 39% (25/64) experienced difficulties in accessing help from other services. 51% (33/65) experienced challenges in providing bereavement support to relatives. Free-text comments identified staff shortages and exhaustion, and lack of support from other healthcare services, as barriers to good care.ConclusionThis is the first national survey to explore provision of palliative and end-of-life care in care homes during the COVID-19 pandemic. The results will be used to inform policy to ensure high-quality provision of palliative and end-of-life care during future pandemics.