District nurses play under-recognised role in end of life care, says think tank

The increasingly vital role of district nurses in providing end of life care in the community is little understood by NHS commissioners, according to a think-tank report.

A report from the King’s Fund, entitled ‘Dying Well at Home’, found that NHS commissioners frequently lacked an understanding of the role played by district nurses and often had limited data about the generalist services in their area.

Generalist services include GPs, district nurses, and homecare providers who often take on the bulk of end-of-life care for those who die at home; alongside their other responsibilities.

Since Covid-19 there has been a surge in the number of deaths at home and in care homes, rather than in hospital. It is estimated that the number of deaths at home is set to overtake those in hospitals and hospices by 2030, and account for three-quarters of all deaths by 2040.

Deaths at home and in care homes surged in 2020, with 41,000 more deaths than expected in private homes in England and Wales and 25,000 more than expected in care homes.

However, as the report’s authors argue, ‘very little is known about whether all those people who died at home had a good death’.

The findings were based on interviews with NHS commissioners responsible for end-of-life care in integrated care boards (ICBs) in 10 areas of England and social care commissioners in five local authorities.

These interviews revealed that, while the development of ICSs created a ‘moment of opportunity’ to develop end-of-life care, many commissioners currently lacked very basic information needed to commission care in their area.

Outside of specialist services, such as hospices, the study found ‘variable ability to measure the quality of end-of-life care at home’ while in some cases ‘NHS commissioners told us that they had literally no quality measures for generalist end-of-life care at home.’

One NHS commissioner who spoke with the King’s Fund said: ‘We do have quality measures in place for hospice care, but what happens to the population that dies at home, are there any quality measures in place? No, there are not. There is none whatsoever.’

Commissioners were encouraged to ‘Focus on getting an overview of quality of end-of-life care in their local ‘place’ that looks across health and social care and that includes both specialist and generalist services’

A spokesperson for the Queen’s Nursing Institute told Nursing in Practice that, since the pandemic, ‘There is a growing level of awareness about the vital role of district nurses in delivering healthcare in the community.

‘There is a growing and ageing population in the UK and the number of people requiring end of life care is increasing. The people needing care may be elderly, with multiple complex health conditions requiring specialist care.

‘Against this backdrop, the number of qualified district nurses will need to increase significantly to meet the needs of individuals, families and carers, and deliver the NHS’ objectives to deliver high quality care in people’s homes and prevent unnecessary hospital admissions.’

The report also predicts that as more deaths occur at home, district and other community nurses will ‘become even more important’. For this reason, the authors maintain that ‘getting the right balance between developing the critical role of these generalist services and investing in the equally critical role of specialist services should be a priority’.

The King’s fund also found that while all commissioners were aware of inequalities in end-of-life care, none had begun action to redress these inequalities. Again, lack on information and understanding of services in the community presented a serious barrier to action.