Better End of Life report

8th April 2021

A report published today shows how palliative and end of life care in the UK was compromised by shortages of PPE, essential medicines, and equipment, because these services were not seen as ‘frontline NHS’ in the pandemic.

Better End of Life is a review of dying, death and bereavement during COVID-19 and highlights valuable lessons for the long-term future of palliative and end of life care and bereavement support in the UK.

Professor Katherine Sleeman, lead researcher for Better End of Life 2021:  Dying, death and bereavement during Covid-19 said:

“The Covid-19 pandemic accelerated the need for palliative and end of life care in the UK. However, the experiences of those affected by dying, death and bereavement – whether as a result of Covid-19 or other conditions – have had little scrutiny to date. It is essential that we learn from the achievements and weaknesses in care that the pandemic has exposed, to improve future provision of palliative, end of life and bereavement care.”

The report says more needs to be done to understand the care people did and didn’t receive to ensure that the whole system is ready for the increased number of people dying in the future, which is projected to be 100,000 more people a year across the UK in 20 years.

In 2020, the number of people who died was just over 695,000 – an increase of 91,000 on the previous five-year average (604,000).  There has also been a large increase in deaths at home – the overwhelming majority of which were from causes other than Covid-19.   

Professor Fliss Murtagh, Professor of Palliative Care and Associate Director of the Wolfson Palliative Care Centre, University of Hull, and co-researcher, said:

“While hospital and care homes deaths have increased during the pandemic waves, home deaths have increased throughout all of the last twelve months’, even between the waves. Home-based services have therefore had to provide more support for people dying at home and their families, over the last year.”

Experts warn that the last year has been a stress-test for community-based palliative care, in homes and care homes.

The Better End of Life 2021 report contains unpublished UK data from CovPall – a study of the role and response of palliative care and hospice services to the Covid-19 pandemic – it shows that palliative care teams in all settings were stretched to and beyond capacity, but proved a vital component to the emergency pandemic response.

However, too often, the ability of palliative care services to provide vital care and support was undermined by failing to be treated as a frontline NHS service.

Professor Katherine Sleeman added:

“The data show that hospice and palliative care teams had problems accessing supplies, partly because they felt they were not recognised as part of NHS supply chains.”

Primary care services also delivered more palliative and end of life care, with GPs and district nurses increasing their support for people dying at home.  

However, community and home-based care was particularly stretched, meaning people may not have been able to access the support they needed. At the same time, slogans such as ‘stay at home, protect the NHS’ may have discouraged people with life-limiting illnesses to seek hospital care when they needed it.

The researchers highlight that societal preferences and expectations for death and dying may have permanently changed, and if so, that new models of delivering palliative and end of life care in the community would be needed to reduce pressures on the NHS and ensure dying people are supported to die well at home.  

Attention is also needed to ensuring carers and family members do not become overwhelmed, as many have done during the pandemic. Greater support for those affected by bereavement and complicated grief during the pandemic is also urgently needed.

Dr Stephen Barclay added:

“Bereavement has been a much more difficult experience for people during the pandemic, whether loved ones died from COVID-19, died from non-COVID conditions, or were bereaved before the pandemic. There is pressing need to develop bereavement support to address this “tsunami of grief.”

Alongside the Better End of Life report, a new survey of bereaved carers showed over 75 percent of people who died at home during the pandemic may not have got all the health and social care they needed.  

Carers also shared that they took on more emotional burdens when caring for their dying loved one, yet three out of four of all respondents felt they were not offered all the care and support they needed as carers.

The report calls for a long-term settlement to ensure end of life care is sustainably funded, with a particular emphasis on ensuring people dying at home, and their carers, always receive the support they need.

Better End of Life 2021: Dying, death and bereavement during Covid-19 Research Report Sleeman, K.E., Murtagh, F.E.M., Kumar, R., O’Donnell, S., Cripps, R.L., Bone, A., McAleese, J., Lovick, R., Barclay, S., & Higginson, I.J. (King’s College London, Cicely Saunders Institute; Hull York Medical School, University of Hull; and University of Cambridge, UK). The impact of Covid-19 on dying, death and bereavement in the UK. Final report. London (UK): Marie Curie. 2021 April.

https://www.mariecurie.org.uk/policy/better-end-life-report