Nuffield Trust: UK hospices adapt to huge pandemic shake-up to end of life care

Hospices in the UK delivered ‘hospice at home’ services almost a million times during the pandemic as they sought to rapidly adapt to a seismic shift in where people died, an analysis by the Nuffield Trust reveals.

The increasing number of people dying at home, seen before the pandemic, has rapidly accelerated, with statistics authorities across the UK recording over 100,000 extra deaths at home over the last two years.  

Hospices have been agile by turning to remote communication and providing more services within the homes of patients but there is a need to ensure access to services is equitable, and that services are properly supported so the experience of dying at home is a positive and dignified one.

The report, Support at the end of life: the role of hospice services across the UK finds:

• An estimated 300,000 people in the UK were supported by hospices in 2020/21, including patients, families, carers and bereaved relatives.
• There has been a shift during the pandemic in where and how hospice services are provided, with more care delivered at home, making almost a million “hospice at home” contacts in 2020/21. In contrast, hospice day services and outpatient settings saw a decline in contacts and people seen, and fewer people were hospice inpatients in 2020/21.
• In 2020/21 there were over 120,000 community support contacts between people and services delivered virtually, along with virtual welfare, bereavement, and therapy services. Hospices switched to providing services remotely, to respond to concern from patients about attending appointments, and to reduce risk of Covid-19 infections.
• Despite only a small drop, around 4%, in the number of people supported by hospices in 2020/21, particularly when compared to other health services during the pandemic, hospice and end-of-life care still faced significant disruption.
• Hospices reported changing their delivery in response to Covid-19 in other ways, for example bringing together teams from different organisations with a range of skills to address workforce gaps, but it has been difficult to gather information on how new ways of delivering care are going.
• The needs of patients using hospice services appear to have become more complicated with greater demand from these patients for both in-patient end of life care and bereavement services.

Hospices must be supported to respond appropriately and evolve with changing patterns in where people are dying. If hospices are to sustain the increase in people dying at home and embed positive changes made during the pandemic, better quality data on what hospices do, who they support, and how, is needed.

Improving data collection is vital to ensuring hospices are responsive to the needs of people dying and their loved ones. This is more urgent than ever, given the impact of the pandemic on where people are dying and the rapid shift in how care is provided. 

Sarah Scobie, Deputy Director of Research at the Nuffield Trust said:

“It’s so important we get end of life care right – for patients and their loved ones. The pandemic has been a difficult time and has rapidly accelerated changes to how hospice care is delivered.

“Services have adapted to reach the increasing number of people who need support from hospices in their own homes. But we need to know more about people’s experiences of that care and ensure that all areas have services which are properly supported to meet the needs for end of life care and sustain these changes as more people die at home.”

Craig Duncan, interim Chief Executive of Hospice UK said:

“This report shows that hospices continue to play a vital role in providing quality end of life care. Having adapted so quickly during the pandemic, hospices have been able to serve their communities and provided much needed care for people and their families at a time when it was most needed.

“Hospices are often best placed to provide high-quality, holistic care for a dying person either in the hospice itself, or more commonly at home. The pandemic has only reaffirmed that hospices play a key role in ensuring that people get the best quality care and are able to die where they wish, with the support they need.

“More and more we have seen that hospice staff have been able to provide quality end of life care throughout the pandemic and beyond. As part of an increasingly integrated health and care system, hospices will continue to deliver important end of life care for their community into the future.”