Covid constraints on care: the impact of COVID-19 on decision-making for people at the end of life and the experiences of healthcare professionals and bereaved carers

ABSTRACT

IntroductionPeople are living longer with terminal illness, increasing the need for good palliative care. Projections indicate rising home deaths;accelerated by the COVID-19 pandemic but dying at home is reliant on informal carers.AimsTo identify the impact of the COVID-19 pandemic on hospice services from the perspectives of staff and bereaved carers, exploring decision-making for place-of-care and informal caring.MethodScoping reviews explored (1) place of end of life care, and (2) informal caring during the pandemic. Online interviews are being conducted with healthcare professionals in England (n=10) and Scotland (n=10) and bereaved carers who experienced Marie Curie services during lockdown in England (n=10) and Scotland (n=15-20). Once completed by January 2022 and thematically analysed key findings will drive a ‘knowledge exchange’ discussion with policy makers in England and Scotland.ResultsThe reviews and preliminary interview findings indicate the pandemic has put greater pressures on those accessing palliative care services. Decisions were influenced by the media;‘fear of contracting’ or ‘spreading the virus’ are evident in preferences for ‘home-based care. Social distancing, wearing of PPE and shielding restricted practical and emotional support that carers feel enable a good home death. The literature suggests that many carers adjusted to the altered methods of social connection and communication, but interview data suggests concerns about wellbeing especially where ‘grief’ was put ‘on hold’, delaying the bereavement process.ConclusionFindings will identify key considerations for policy and practice change around the future of hospice services if the move to community continues and how we develop and deliver hospice community based services to meet need.ImpactThis research will seek to inform Government policy and Marie Curie services to enable evidence based change and inform future research priorities.