Title: Preferred Place of Care at the End-of-life during Covid-19 (PPCE C-19): The impact of Covid-19 on decision-making for place of care at the end-of-life for hospice patients
Funder: Marie Curie

Abstract: Previous studies1-3 predict global challenges of an ageing population for those requiring end-of-life care and warn of the risks for health and social care services given the trends in place of death. A projected increase in annual deaths from 501,424 in 2014 (38.8% >85 years) to 635,814 in 2040 (53.6% > 85 years) suggests expanding effective care home and community provision4 to avoid overwhelming hospitals, least considered the preferred place of death5 and previously criticised in terms of quality6. Covid-19 put unprecedented pressure on the NHS, which was experiencing an increase in end-of-life admissions to hospitals. During the pandemic, hospice use decreased whilst hospitals and community deaths have increased11. This project aims to explore the impact of Covid-19 on place of death to better inform policy developments considering the decision-making behaviours of hospice patients and utilisation of palliative care services during the pandemic. A scoping review reporting where people have died since the start of the pandemic in UK will be conducted to identify the trends and transformations in place of death and show any differences to previous predictions. This will help inform where future services are most likely required and enable appropriate support to be embedded in the right place for people at the end-of-life in all settings to achieve a good death. Online interviews will be conducted with hospice staff (n=20) and bereaved close persons (n=20) from hospices in England and comparatively in Scotland to explore how the pandemic has affected decision-making about place of death. These qualitative data will be analysed thematically. Understanding the impact of Covid-19 on place of death short- and long-term will enable appropriate immediate and longer-term responses to change. Findings will be discussed in a round-table event with policymakers to appropriately plan future palliative care services and ensure quality end-of-life care across all settings.

Lay abstract: People are living longer and more people are living with a terminal illness from which they will die for a longer period of time. This has increased the need for palliative care services. Research has found that currently, most people die in hospital however projections indicate most people will die at home in the future and services will need to meet this need. Acute hospitals which are already over stretched may not be able to provide quality end-of-life care for the increased number of people who need it. The Covid-19 pandemic has put an overwhelming pressure on the NHS and although the impact has been made most visible by the media that this has occurred in hospital, most deaths have occurred in the community. Comparatively, hospice use has reduced. We need to understand how the pandemic has changed how people access palliative care services and where people requiring palliative care now die in order to appropriately plan future care. On-going studies are investigating the data to show where people have died. We aim to explore the decision-making process about place of care at the end-of-life. Firstly, we will review the evidence from all studies reporting projections and decision-making for place of end-of-life care since the pandemic to provide an overall picture of any changes. Secondly, we plan to interview hospice staff and bereaved relatives via Marie Curie Hospices in England and Scotland to explore how the pandemic affected their experience of hospice palliative care services and if/how it changed people’s understanding of “hospices” or “different locations” as a place[s] to be cared for at the end-of-life. This will provide detailed information about decision-making, preferences and factors that affect these things in order to inform policy and more effectively manage services in the future which will be shared with key stakeholders.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE