Marie Curie is collaborating with several UK universities on a ‘Better End of Life’ programme – which is focused on ensuring a ‘best possible end of life experience’ for everyone.
The news follows the findings of a report by the charity and its partners, which has helped to launch the three-year project . It found that palliative care in the UK and those with life-limiting illnesses had suffered ‘profound impacts’, during the COVID-19 pandemic.
The report highlights shortages of PPE, essential medicines, and equipment as being among the reasons for the impact on the quality of end-of-life care. Research also found that although primary care services ‘delivered more palliative and end of life care’ the ‘community and home-based care was particularly stretched’.
The report also suggests palliative care services were ‘undermined’ by failing to be treated as a ‘frontline’ service.
‘Priorities for policy’ in the published literature include a need for: appropriate resourcing of palliative care services, recognising the frontline role of these services during the pandemic, increased provision of bereavement services, and that family members, carers, primary services and care homes must be recognised as providers of palliative care.
Marie Curie is to work with experts from the Hull York Medical School, University of Hull, King’s College London Cicely Saunders Institute, and the University of Cambridge to continue to ‘examine evidence’ on ‘dying, death and bereavement’ across the UK. It will also propose policy agendas and is calling for long-term sustainable funding support for those dying at home, and their carers.
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 on the programme, 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.
“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’.”
Another ‘key research finding’ in the report was that despite being ‘stretched to and beyond capacity’, palliative care teams across the UK made ‘rapid innovations’ by ‘adapting their services to educate, upskill and support wider health and social care professionals’.
According to the University of Hull, the report is accompanied by the results of a survey of bereaved carers, conducted by Marie Curie with data partner Dynata, which found that ‘three quarters of people who died at home during the pandemic may not have got all the health and social care they needed’.
Marie Curie Chief Executive Matthew Reed, said: “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.
“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.”
Read the full report online via mariecurie.org.