Dying matters - which is why we need to deepen our understanding of end-of-life care

What does it mean to be in a good place to die?

That’s a question that Hospice UK are encouraging people to think about as part of this year’s ‘Dying Matters Week’. Obviously, the idea of ‘place’ here is somewhat metaphorical, and rightly draws our attention to the importance of people’s and their family’s emotional states as they approach end-of-life.

'Deaths at home reached a high of 33 per cent of total deaths in July 2020, and sat at the start of this year at 28 per cent, still up from the January 2020 rate of 24 per cent.'

However, physical place is also a very important part of discussions about this area of care. Indeed, this has been a particular focus during the Covid-19 pandemic, during which there has been a large increase in the numbers of people dying at home (rather than in hospitals or care homes). Deaths at home reached a high of 33 per cent of total deaths in July 2020, and sat at the start of this year at 28 per cent, still up from the January 2020 rate of 24 per cent. This has led to questions about the extent to which people have been able to make meaningful choices about their care in the final weeks and months of their life, and about whether that care is of a sufficient quality to ensure that people really are in ‘good’ places to die.

For various reasons, answering these questions and really getting under the bonnet of what’s going on in end-of-life care can be a challenge. For one thing, compared to other areas of care, it can be difficult to identify quantitative metrics and collect data that tells us whether good outcomes are being achieved – a situation that has been accentuated by some key data sources being discontinued, such as the National Survey of Bereaved People.

The nature of end-of-life care is that it is very broad, and brings together a variety of pathways. This makes collecting data on generalisable clinical outcomes tricky, with the things that patients really prioritise tending to relate to compassion, communication and comfort. This challenge is compounded by the range of professional staff that come together at the end-of-life, with domiciliary care workers often playing just as important a role as doctors.

Another issue that makes answering these questions difficult is the way services are commissioned in the NHS. There aren’t, as a matter of course, dedicated end-of-life care commissioners – and there is rarely anyone within local systems required to take a birds-eye view of the co-ordination of all the services that come together in people’s final days. This means that approaches to end-of-life care at the system level, and the information we have about them, are often quite ad-hoc.

'...there are serious gaps in our understanding about whether people really are in ‘good places to die’.'

All of this, predictably, means that there are serious gaps in our understanding about whether people really are in ‘good places to die’. One of the ambitions established by the National Palliative and End of Life Care Partnership (a framework used to benchmark services and local strategies) is that ‘each community is prepared to help’ with end-of-life care, and that we are all ready to ‘support each other in emotional and practical ways’. This is an important goal, which encapsulates the ways in which dying and bereavement are ‘not primarily health and social care events’, but instead are far more significant and communal experiences for both families and communities. How though, do you go about systematically measuring progress on improvements in end-of-life care?

The King’s Fund is launching a new research project that will aim to find out more about this area of care, particularly in the context of deaths that occur at home. We are going to speak to commissioners and others inside the system to try and get a handle on how they go about measuring and assuring quality in end-of-life care, and in so doing, work out what is needed to support and improve commissioning. In particular, we will look to explore what inequalities exist in care at end of life – between different areas, people with different conditions and between people with different protected characteristics – and whether decision makers have the tools needed at their disposal to identify and address them.

Whatever this means in practice, it’s clear that we need to find ways of deepening our knowledge of what’s going on in end-of-life care. This is an important part of how we will make sure that everyone is in a ‘good place to die’ – and ensure that service provision and quality keeps up with the changes that have occurred in where people die due to the pandemic.