A new report suggests 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.
The 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.
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.
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The Better End of Life 2021 report contains unpublished UK data from CovPall – a study of the role and response of palliative care and hospice services to the Covid-19 pandemic – it shows that palliative care teams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.
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.
In light of the 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, ‘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.
‘The Better End of Life research programme has never been more needed. In the coming years it will help national and local decision-makers across the UK have the evidence they need to improve end of life experience for all.’
Visit the Marie Curie website to read the report in full.