ANOTHER IMPORTANT CONTRIBUTION TO OUR SPECIAL SERIES ON COVID-19 AND THE PALLIATIVE CARE RESPONSE…
Today’s guest writers are Rachel Cripps, Dr Anna Bone, and Professor Katherine Sleeman from the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, United Kingdom, Professor Fliss Murtagh and Dr Sean O’Donnell from the Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, UK, and Dr Stephen Barclay from the University of Cambridge, UK.
Read on to hear about their recent report on ‘Better End of Life 2021: Dying, death and bereavement during Covid-19’ and the findings from a hot-off-the-press publication on changes in mortality patterns and place of death during the COVID-19 pandemic, which is Open Access …
The COVID-19 pandemic has increased mortality worldwide and has affected how1 and where people die.2 As a result, issues surrounding dying, death and bereavement have been brought to the fore in the media and public discourse.
The Better End of Life Programme is a three-year collaborative project between Marie Curie, King’s College London Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge. This exciting new programme will explore the state of dying, death and bereavement across the four nations of the United Kingdom and propose a policy agenda that aims to ensure best possible end-of-life care is experienced by all.
In our first research report of the series Better End of Life 2021: Dying, death and bereavement during Covid-19 3 we shed light on the multiple and ongoing impacts of the COVID-19 pandemic on end-of-life care. We showed that UK deaths peaked during the third week of April in 2020, with 24,691 deaths of which 9,509 were caused by COVID-19. In the same month, care homes became the most common place to die in England for the first time, raising the profile of this important sector and highlighting that care homes are key settings for end-of-life care.
We have recently published a paper 4 that explores patterns of place of death in the four nations for the UK in more detail (now available to download in Open Access). A COVID ‘wave’ has not been clearly defined; so, we defined a wave as ‘10% or more increase in total deaths, compared to expected deaths, sustained for at least three weeks or more’. We found that across the four nations of the UK, deaths at home increased during the first COVID wave, which in the UK occurred between March 2020 and May 2020. The higher-than-average number of deaths at home was sustained throughout 2020 and peaked again during the second wave, which for the UK occurred between October 2020 and February 2021. We don’t fully understand why this happened. With visitor restrictions in place, many people may have actively avoided hospital or hospice admission, opting to die at home through fear of contracting COVID-19 and to ensure they could be surrounded by their loved ones.5 The extent to which this phenomenon has been observed in other nations affected by COVID-19 is unclear.
We do not know whether societal preferences and expectations for death and dying have shifted permanently as a result of the pandemic. What is clear is that dying at home may not be a positive experience without adequate support. Therefore, primary care services, which play a key role in providing end-of-life care, as well as community specialist palliative care services, must be properly resourced to meet the increasing demand.
While routine data provides an opportunity to examine patterns of mortality, we currently know little about how death and dying were experienced by patients and carers in the past year. It is crucial that we understand this missing piece, listening to those who have experienced end-of-life care during the pandemic, so that important lessons are learnt. As part of the The Better End of Life Programme we next plan to gather the views and experiences of bereaved family members across the UK, to inform policy with the aim of ensuring the best possible end of life is experienced by everyone in the future.
- Lovell N, Maddocks M, Etkind SN, et al. Characteristics, Symptom Management, and Outcomes of 101 Patients With COVID-19 Referred for Hospital Palliative Care. J Pain Symptom Manage. 2020;60(1):e77-e81.
- Bone AE, Finucane AM, Leniz J, et al. Changing patterns of mortality during the COVID-19 pandemic: Population-based modelling to understand palliative care implications. Palliat Med. 2020;34(9):1193-201.
- Sleeman KE MF, Kumar R, O’Donnell S, Cripps RL, Bone AE, McAleese J, Lovick R, Barclay S, and Higginson IJ. Better End of Life 2021. Dying, death and bereavement during Covid-19. Research Report: Marie Curie, UK; 2021. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2021/better-end-of-life-research-report.pdf
- O’Donnell SB, Bone AE, Finucane AM, et al. Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations. Palliat Med. 2021: https://journals.sagepub.com/doi/full/10.1177/02692163211040981
- Higginson IJ, Brooks D, Barclay S. Dying at home during the pandemic. BMJ. 2021;373:n1437.
Links and resources
- Cicely Saunders Institute
- Wolfson Palliative Care Research Centre
- Better End of Life 2021: Dying, death and bereavement during Covid-19. Research Report.
- Follow us at @CSI_KCL
- Read more posts in the COVID-19 and the Palliative Care Response on the EAPC blog.
More about the authors…
Professor Katherine Sleeman is Laing Galazka Chair in Palliative Care, NIHR Clinician Scientist and Honorary consultant in palliative medicine. She is academic lead on the Marie Curie funded Better End of Life Programme. Rachel Cripps is a Research & Projects Coordination Assistant. Dr Anna Bone is a Research Associate. Professor Fliss Murtagh is Professor of Palliative Care, and Associate Director of the Wolfson Palliative Care Research Centre. Dr Sean O’Donnell is an Academic Foundation Programme Doctor. Dr Stephen Barclay is University Senior Lecturer in Palliative and End of Life Care at the University of Cambridge.
This work is supported by Marie Curie, grant [MCSON-20-102].
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