Research shows end of life care was not seen as an essential, frontline service in the pandemic

• Experts agree Covid-19 has been a stress-test for care of dying in the future
• Better End of Life programme launched today to help ensure everyone has best possible end of life experience
• Marie Curie calls for proper recognition and sustainable funding of end of life care and bereavement support

A new 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 – a collaboration between Marie Curie, King's College London Cicely Saunders Institute, Hull York Medical School, University of Hull, and the University of Cambridge – is a new research programme that will examine evidence on the current state of dying, death and bereavement across the four nations of the UK and propose a policy agenda aimed at helping to ensure that everyone has the best possible end of life experience.

Today's report, which launches the programme, is the first comprehensive 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.1

Professor Katherine Sleeman, from King's College London and lead researcher on the Better End of Life 2021: Dying, death and bereavement during Covid-19' Research Report, 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.2

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 of Palliative Care, Hull York Medical School, and Associate Director of the Wolfson Palliative Care Research 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.

Dr Stephen Barclay, a GP and Consultant in Palliative Care from the Department of Public Health and Primary Care at the University of Cambridge, and co-researcher, said:

"General Practitioners, Community Nurses and Care Home staff have all been at the front line of end of life care during the pandemic. There is a pressing need for their central role in caring for people at the end of their lives to be recognised, supported and adequately resourced."

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.3

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, by Marie Curie and conducted in partnership with data and insights provider Dynata, showed that three quarters 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 (76 per cent) felt they were not offered all the care and support they needed as carers.4

In light of today's report, end of life charity Marie Curie is calling 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.

Marie Curie Chief Executive Matthew Reed, said:

"Many people will not be able to forget the deaths we have experienced this last year, but it is crucial that the lessons learned during the pandemic are applied to policy and practice in ways that help ensure that, in future, everyone has the best possible end of life care and experience.

"Palliative and end of life care must be an essential part of the health and social care system and not a forgotten after-thought. Hospitals and care homes have rightly had a focus in the pandemic but the Better End of Life 2021 Research Report shows us that many in our society fall through the cracks when they need support at the end of life.

"How the dying spend their final days lives on in the memory of the people who love them. It is true that most people would choose to die at home, but no one should be allowed to die in pain and without the essential care they need. Today, we are calling for a long-term settlement to make sure end of life care is sustainably funded, with a particular emphasis on ensuring people dying at home always receive the support they need.

"The Better End of Life research programme has never been more needed. In the coming years it will help national and local decisionmakers across the UK have the evidence they need to improve end of life experience for all."

-ends-

1. Better End of Life 2021: Dying, death and bereavement during Covid-19 Research Report 1 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. Link to Research Report: www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2021/better-end-of-life-research-report.pdf

Link to Better End of Life 2021: Dying, death and bereavement during Covid-19 Briefing:
www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2021/better-end-of-life-report-briefing.pdf

Methodology

The research report draws on published literature, and secondary analysis of research and publicly available data. It includes previously unpublished data on the intensity of activity of hospice and palliative care services in UK nations and English regions, as well as the challenges faced by UK services, drawn from the CovPall study, a multinational observational study of palliative care during the Covid-19 pandemic funded by the UKRI and NIHR.

The research report was carried out by an Expert Group made up of clinical academics in palliative medicine and primary care from King's College London, Hull York Medical School, University of Hull, and the University of Cambridge, as well as other researchers with both clinical and non-clinical backgrounds.
The Group's work was shaped and informed by a Patient and Public Involvement (PPI) Reference Group and members of the Cicely Saunders Institute PPI web-based forum. It is the insights from these individuals and carers, and the professionals supporting them which lie at the centre of our research findings and policy recommendations.

Funding

This report was supported by Marie Curie, grant [MCSON-20-102]. The CovPall study is jointly funded by UKRI and NIHR [COV0011; MR/V012908/1], with additional support from the National Institute for Health Research (NIHR) Applied Research Collaboration, South London, hosted at King's College Hospital NHS Foundation Trust, and Cicely Saunders International (Registered Charity No. 1087195). Professor Katherine Sleeman is funded by an NIHR Clinician Scientist Fellowship (CS-2015-15-005) and is the Laing Galazka Chair in palliative care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. Professor Fliss Murtagh is a National Institute for Health Research (NIHR) Senior Investigator, Professor Irene Higginson is an NIHR Senior Investigator Emeritus. Professor Higginson and Dr Stephen Barclay are supported by the NIHR Applied Research Collaboration (ARC) South London (SL) and NIHR ARC East of England respectively. Dr Anna Bone is funded by the Dunhill Medical Trust and Cicely Saunders International.

2. Etkind, S.N., Bone, A.E., Gomes, B. et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med 15, 102 (2017). https://doi.org/10.1186/s12916-017-0860-2

3. CovPall study

The research report draws on unpublished data from the CovPall study (Principal Investigator Prof Irene Higginson). We thank CovPall study team members including Prof Nancy Preston, Dr Matthew Maddocks, Dr Sabrina Bajwah, Prof Lorna Fraser, Dr Mevhibe Hocaoglu, Dr Adejoke Oluyase, and Prof Catherine Walshe. We thank the CovPall collaborators and advisors, participants especially the responding hospices and palliative care services, PPI members and our Study Steering Group. For more information see https://www.kcl.ac.uk/cicelysaunders/research/evaluating/covpall-study/covpall-study

4 Survey of bereaved carers

For the survey Marie Curie partnered with Dynata, the world's largest first-party data and insights platform, and respondents confirmed that they both knew someone who had died at home from March 2020 to date, and were involved in caring for that person. The survey ran for the last 2 weeks of March 2021 and respondents were from the following nations within Great Britain: Scotland: 97; Wales: 80; England: 818.

Three quarters of people who died at home during the pandemic may not have got all the health and social care they needed.

Carers surveyed said their loved one didn't get all the help they needed with pain management (64%), personal care (61%) and out-of-hours support (65%) before they died at home. 78% shared that the pandemic meant they took on more emotional burdens when caring for their dying loved, and 76 percent of all respondents felt they were not offered all the care and support they needed as carers.

Further information available here https://www.mariecurie.org.uk/media/press-releases/charity-warns-three-out-of-four-home-deaths-during-pandemic-did-not-get-the-care-they-needed/293397

Marie Curie's own analysis found that overall since March 2020, deaths at home rose as a proportion of total deaths in Great Britain (England, Wales and Scotland) from 24% to 29%, compared with the five-year average for the same period, while deaths in care homes rose from 22% to 24%, with a corresponding fall in the proportion of hospital deaths 47% to 42%.

About Marie Curie

Marie Curie is the UK's leading end of life charity.  The charity provides essential frontline nursing and hospice care, a free support line and a wealth of information and support on all aspects of dying, death and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.

The charity believes it is important to talk more openly about dying, death and bereavement to improve experiences at end of life and to help reduce the lasting effects of grief.  Marie Curie organised a National Day of Reflection on 23 March 2021 to provide an opportunity for the Nation to reflect, remember and celebrate the lives of everyone that died during the pandemic – from Covid and other causes. The charity aims for the national day of reflection to become an annual event.
Please note we are 'Marie Curie' (not 'Marie Curie Cancer Care').

Marie Curie information and support: Call free on 0800 090 2309. Lines open 8am-6pm Monday to Friday and 11am-5pm on Saturday. Visit mariecurie.org.uk/help/support

About King's College London

King's College London is one of the top 10 UK universities in the world (QS World University Rankings, 2021) and among the oldest in England. King's has more than 29,000 students (including more than 12,800 postgraduates) from some 150 countries worldwide, and some 8,500 staff.

King's has an outstanding reputation for world-class teaching and cutting-edge research. In the 2014 Research Excellence Framework (REF), eighty-four per cent of research at King's was deemed 'world-leading' or 'internationally excellent' (3* and 4*).

King's Strategic Vision looks forward to our 200th anniversary in 2029 and sets out our ambitious plans in five key areas: educate to inspire and improve; research to inform and innovate; serve to shape and transform; a civic university at the heart of London; an international community that serves the world.

More information: https://www.kcl.ac.uk/about

The Cicely Saunders Institute is the world's first purpose-built Institute for Palliative Care and Rehabilitation, named after Dame Cicely Saunders (1918–2005), recognised internationally as the founder of the modern hospice movement 50 years ago. The Institute is a partnership of Cicely Saunders International, King's College London and associated local clinical services to bring together clinical and academic teams to innovate, discover, evaluate, and translate solutions

About Hull York Medical School

Hull York Medical School is a partnership between the University of Hull and the University of York. Since opening in 2003, the School has become known as one of the UK's most welcoming and inclusive medical schools with a reputation for innovative, inspiring and rigorous medical education. Students graduate from Hull York Medical School as excellent thinkers, evidence-based practitioners and patient-centred communicators, who are thoroughly prepared for clinical practice.

Hull York Medical School researchers conduct world-class, interdisciplinary research, addressing issues that are of critical national and international importance, including primary care, mental health, palliative care, public health, and immunology and infection. Research undertaken to date has attracted significant grants and funding, including from Marie Curie, the Wolfson Foundation, Cancer Research UK, and the British Heart Foundation. The School strives for excellence in research, with 85% considered world-leading or internationally excellent (REF 2014).

About the University of Cambridge

The mission of the University of Cambridge is to contribute to society through the pursuit of education, learning and research at the highest international levels of excellence. To date, 109 affiliates of the University have won the Nobel Prize.
Founded in 1209, the University comprises 31 autonomous Colleges and 150 departments, faculties and institutions. Cambridge is a global university. Its 19,000 student body includes 3,700 international students from 120 countries. Cambridge researchers collaborate with colleagues worldwide, and the University has established larger-scale partnerships in Asia, Africa and America.

The University sits at the heart of the 'Cambridge cluster', which employs more than 61,000 people and has in excess of £15 billion in turnover generated annually by the 5,000 knowledge-intensive firms in and around the city. The city publishes 316 patents per 100,000 residents.
www.cam.ac.uk

About Dynata

Dynata is the world's largest first-party data and insights platform. With a reach that encompasses over 62 million consumers and business professionals globally, and an extensive library of individual profile attributes collected through surveys, Dynata is the cornerstone for precise, trustworthy quality data. The company has built innovative data services and solutions around its robust first-party data offering to bring the voice of the customer to the entire marketing continuum – from strategy, innovation, and branding to advertising, measurement, and optimization. Dynata serves nearly 6,000 market research, media and advertising agencies, publishers, consulting and investment firms and corporate customers in North America, South America, Europe, and Asia-Pacific. Learn more at www.dynata.com.