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 Barclay said: “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 felt they were not offered all the care and support they needed as carers.
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.”
* 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.