Charity warns three out of four home deaths during pandemic did not get the care they needed
Press release published
- Three quarters of bereaved carers said their loved one didn't get all the care and support they needed and nearly two thirds said their loved one's pain wasn't fully managed
- Separate research also warns end of life care was not seen as an essential, frontline service in the pandemic
- Marie Curie calls for proper recognition and sustainable funding of end of life care in the launch of new report
A charity has warned that three quarters of people who died at home during the pandemic may not have got all the health and social care they needed[1].
Carers surveyed by the end of life charity Marie Curie have said their loved one didn't get all the help they needed with pain management (64%) [2], personal care (61%) [3] and out-of-hours support (65%) [4] before they died at home. 78% [5] shared that the pandemic meant they took on more emotional burdens when caring for their dying loved one, and 76% [6] of all respondents felt they were not offered all the care and support they needed as carers.
The sad findings of the survey, conducted in partnership with data and insights provider Dynata, are released alongside the charity's inaugural Better End of Life report, a comprehensive look at dying, death and bereavement during the pandemic, produced by independent researchers at King's College London, Hull York Medical School, the University of Hull and the University of Cambridge.
During the pandemic, there was a sustained increase in the number of deaths at home, even outside of pandemic peaks with 40% [7] more people dying in private homes overall. Today's report says that the quality of palliative and end of life care across the UK was compromised due to it not being recognised as a frontline, essential service. This meant that palliative care teams struggled to access personal protective equipment (PPE), essential medicines and medical equipment.
Marie Curie has said that the last year has been a stress-test for community-based palliative care in homes and care homes. People with terminal illness have stayed away from hospitals to help protect the NHS but have not been able to get the help they need in the community.
The report finds that urgent action is needed to ensure our health and social care system is ready for the increased number of people dying in future - 100,000 more people a year are expected to die in 20 years' time as the UK population ages.
In light of today's report, 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 always receive the support they need.
Susan Lowe, from the West Midlands, cared for her mother, Sheila, before she died in April last year with bowel cancer:
"Caring for my mum in lockdown was hard. The support we had from nurses and our oncologist changed. It wasn't their fault, the system was just under so much pressure that we had to manage largely on our own. I struggled to get the palliative care drugs mum needed and I spent a lot of time trying to find the right pain killers for her by driving to lots of pharmacies. It made me panic to think that mum would be in pain if I couldn't find what she needed.
"We were offered some appointments over the phone but they were often late and my mum was so ill that we needed people helping us in the home. My dad's cancer is terminal now. I'm really worried that I will have the same struggles. Caring for my mum was a privilege but families need support. We know that there is a pandemic but terminal illness is still happening, people are dying at home as well as in hospital, and it's a really difficult thing to manage in normal times, let alone now. It's horrendous."
Matthew Reed, Chief Executive at the end of life charity Marie Curie, said:
"Many people will not be able to forget the deaths we have experienced this last year and it is vital that the Government, local health and social care leaders, and providers learn vital lessons from the pandemic. It's heart-breaking to see that people dying at home, and their carers, struggled behind closed doors.
"The Government must now ensure that end of life care is seen as essential and not a forgotten after-thought. 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 coming years it will help national and local decisionmakers across the UK have the evidence they need in order to improve end of life experience for all."
Professor Katherine Sleeman, from King's College London and lead researcher on the Better End of Life Report said:
"For people living with serious illnesses and approaching the end of life, the Covid-19 pandemic has had profound impacts. Lockdown and social distancing have caused isolation and loneliness during a phase of life where relationships and human contact are of utmost importance. Although there has been an intense focus during the pandemic on the number of people who have died, the impact on the care needs of these people and those who have been bereaved has received little scrutiny.
"There was a sustained increase in deaths at home during the Covid-19 pandemic. However, without adequate support and care, dying at home may not be a positive experience. Our report highlights how primary care professionals managed increased volume and increased complexity of palliative care for people in the community. At the same time, hospices and palliative care teams made rapid innovations, adapting their services to support more people in their homes and care homes, as well educating and training wider health and social care professionals. However, these teams experienced shortages of essential medicines and equipment meaning they could not always provide the care that was needed.
"Everyone approaching the end of their life deserves the best possible care. The need for palliative care in the UK will increase over the next decades because of population ageing. We must ensure that palliative care services are resourced appropriately."
Better End of Life Report
Today's report, – is a collaboration between Marie Curie, King's College London Cicely Saunders Institute, Hull York Medical School, University of Hull, and the University of Cambridge. It is the first report in an annual series that will examine evidence on the current state of dying, death and bereavement across the four nations of the United Kingdom and propose a policy agenda aimed at helping to ensure that everyone has the best possible end of life experience.
This first research report from the programme explores the ongoing impact of the Covid-19 pandemic on dying, death and bereavement in the UK. It looks back at 2020, a unique year in history that was marked by the arrival of the ongoing Covid-19 pandemic, but which also provides valuable wider lessons for the longer-term future of palliative and end of life care and bereavement support in the UK by drawing on patient and carer perspectives, published literature, secondary analysis of research data, and analysis of publicly available data.
Highlights of the research include detailed analysis of mortality data for England, Scotland, Wales and Northern Ireland, focusing on the impact of Covid-19 on the place of death, extending this beyond the first pandemic peak and to the four nations of the UK. It also contains UK data from CovPall [8] - a study of the role and response of palliative care and hospice services to the Covid-19 pandemic – which shows how frontline services struggled to access essential supplies that compromised the quality of care.
Better End of Life 2021: Dying, death and bereavement during Covid-19 is released today. To read the full report, or a summary briefing, please visit www.mariecurie.org.uk/better-end-of-life-report
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Notes to editors
Survey stats
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
[1]'Three out of four/three quarters: When surveyed respondents said their loved one received no support (8%), very little support (18%), some support (28%) or most (22%) of the care and support they needed (76% total). 24% said they received all the support they needed and 1% answered 'prefer not to say'
[2]nearly two thirds/64% Pain management: When surveyed respondents said they got no help (9%), very little help (15%), some help (19%) or most (21%) of the help they needed with pain management.
[3]61% Personal care (for example bathing and showering, getting dressed): When surveyed respondents said they got no help (14%), very little help (13%), some help (17%) or most (17%) of the help they needed with personal care
[4]65% Out of hours support: When surveyed respondents said they got no help (17%), very little help (15%), some help (15%) or most (18%) of the help they needed outside of office hours and overnight
[5]'78% shared that the pandemic meant they took on more emotional burdens': Respondents were asked if they if the pandemic caused more emotional burden when caring. 14% said they somewhat agree, 27% agreed and 37% said they strongly agreed (78% total).
[6]76% fully supported as carers: When surveyed respondents said, speaking as a carer, they got no (14%), very little (20%), some (26%) or most (16%) of the care and support they needed.
[7] During the pandemic, 40% more people died in private homes: England and Wales data (ONS) and Scotland data (NR Scotland). Place data not available for NI. Figures based on w/e 27 March 2020 to w/e 19 March 2021)
Nation Deaths at home during pandemic period* Deaths at home 5-year average (2015-2019) Percentage increase
England and Wales 177235 124415 42.40%
Scotland 21736 15331 41.70%
Total 198971 139746 42.30%
[8] 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).
About Marie Curie
Marie Curie Nurses, doctors and hospice staff are on the frontline of the Coronavirus crisis. Every day they are helping to support dying people to be cared for away from hospital when every bit of available capacity is needed to care for people diagnosed with the virus, and we are also providing care to those who have tested positive for coronavirus in our hospices and who are suspected as having the virus at home across the UK.
Marie Curie organised a National Day of Reflection on 23 March 2021 to reflect and remember those who have died during in the pandemic from Covid-19 and other causes.
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.