Palliative and end-of-life care must be better resourced after the Covid-19 pandemic ‘exposed systemic weaknesses that must be urgently addressed’, research has found.
The report, published last week, found services struggled to access essential supplies such as PPE, medicine and equipment during the pandemic because they were not seen as ‘frontline NHS’.
It was the first publication of the Better End of Life programme – a collaboration between cancer charity Marie Curie, University of Cambridge, King’s College London, Hull York Medical School and the University of Hull examining the current state of dying, death and bereavement across all four UK nations.
People may not have been able to access vital support because of stretched community services – but at the same time slogans such as ‘stay at home, protect the NHS’ may have discouraged people from seeking necessary hospital care and seen demand for community care rise, the report concluded.
In a series of 10 recommendations, it called for palliative care to be better resourced – including in primary care and the community, which carry out ‘essential, but often overlooked’ end-of-life work.
Dr Stephen Barclay, a co-researcher, GP and palliative care consultant at the University of Cambridge, stressed that GPs, community nurses and care home staff ‘have all been at the front line of end-of-life care during the pandemic’.
He added: ‘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 review, which considered evidence from several studies, highlighted that around 695,000 people died in 2020 – an increase of 91,000 on the previous five-year average of 604,000. Yet the report found there was ‘little focus on the need for palliative care’ at the start of the pandemic.
It said: ‘[Specialist palliative care teams] felt ignored by national and international policy response and often lacked equipment, staff and medicines.’
It included previously unpublished data from observational study CovPall, taken from April to July 2020, of 92 UK community palliative care providers, which found 30% were ‘a lot more busy’ than before the pandemic while 21% were ‘slightly more busy’.
The CovPall survey also found PPE shortages, ranging from 33% of services in the best areas to 61% of services in the worst UK areas.
It also featured a University of Sheffield study of 559 healthcare professionals including 387 community nurses that found 58% had provided ‘a lot more’ or ‘a bit more’ end-of-life care than before coronavirus, with data collected between 1 September and 16 October last year.
The report also suggested that care homes must be recognised as providers of palliative and end-of-life care, after deaths in care homes trebled during the first wave.
Marie Curie chief executive Matthew Reed warned ‘palliative and end of life care must be an essential part of the health and social care system and not a forgotten after-thought’.
He continued: ‘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.’