Having the opportunity to die well at home: what must happen next

Most years, I give a lecture on how health resources are allocated in the NHS to students on a global health course. I talk about how decisions about who receives what in health care are made not once, but continually, daily, in the everyday micro decisions we make in the NHS about how to allocate the resource we have in that service, at that time, to meet the demand we have on that day.

Aware of financial constraints and the burden of demand, students have asked “why do you prioritise end-of-life care when it seems to cost so much?” My answer is always “because dying well matters. You only get one chance to get it right for the individual and those around them – you can’t go back and do it better next time.”

End-of-life (EOL) care, like all aspects of health care, was put under enormous strain during the pandemic. The Nuffield Trust’s latest report investigates how EOL care was impacted, how this affected communities and particular conditions in different ways, and starts to look at the consequences for services. 

More people are dying at home

In Leeds, we saw a 40% growth in people dying at home during the pandemic. Our community teams of nurses, therapists, health care assistants and third sector partners supported those deaths – and continue to do so today. That rise in people’s preference for dying at home has been sustained and continues, more slowly now, to grow.

The Nuffield report details this growth and the higher complexity of care needed by those dying at home who, in the years before the pandemic, chose or ended up having palliative care in either hospital or a hospice. This care, when provided by community teams, often requires four or more visits a day, night sitting or contact during the night (pain control isn’t a 9-5 service). In the best services, it also requires those caring for the individual who is dying to have rapid contact and immediate answers from the staff providing that care.

No one wants to see those they love in pain and distress in their last days and hours. Ensuring that isn’t the case is highly labour-intensive and demanding work, in terms of quantity of resource, the level of experience it requires, and the psychological toll it takes on staff managing their own response to managing death and dying as part of their daily work. It is important to note that few areas of the country have 24-hour waking community services as we do in Leeds, so the work falls to out-of-hours primary care alone. Few areas have night sitting services, which in my view are a crucial part of some EOL care at home.

There has been an overall acknowledgement, nationally, of the growth of EOL care at home, but community services have simply absorbed the work alongside their other growing commitments. Consequently other ‘routine’ work is delayed, and other pressures deprioritised in order to ensure that people get the opportunity to die well at home.

Inequality even at the end of life

What we learn from this research, however, is that not everyone gets that opportunity, and that “dying well requires people to be articulate, to have time, energy and persistence, and to have a self-belief that they deserve care”.

As the research shows, the growth in those choosing to die at home during the pandemic disproportionately came from the least disadvantaged neighbourhoods of the country. I haven’t yet looked to see if that is the case in Leeds, but I fear that it will be. Despite the well-documented literature that demonstrates that those from disadvantaged areas use A&E more and have worse outcomes across many health indictors, we in Leeds hadn’t mapped the rise in EOL care against postcode. I will be doing so. Even more shockingly, the research outlines that “people from more deprived areas had fewer EOL medications prescribed and were less likely to have palliative care coded”.

As I said at the beginning: we only have one chance to get this right. What this demonstrates, and again shouldn’t surprise us, is that we continue to let down the poorest and those from minority ethnic groups at the end of their lives, as we do at so many other points in their contact with health services earlier in their lives.

The time for action

This is an important paper. It tells us that more people than ever are dying at home but that not everyone has equal access to that care. We can, and should, do something about this. The NHS often looks for ways in which it, as an individual institution, can tackle health inequalities.

We are all aware that most health inequalities are improved by access to good housing, education, and a job that is properly renumerated. The ability to make a change to at least 10% of health inequalities lies firmly, however, in the hands of the NHS alone. In the health service, we have the ability to query our own data, to understand what it is telling us in terms of access from different groups, to listen to people’s experiences, to query why certain groups aren’t represented, to map our service increases or our do-not-attends, and to change our services with others, to make care better.

We need to understand how we ensure everyone has access to the best possible care, and we need to make conscious decisions now as a society about how we invest in the services needed to allow everyone, and those who care for them, the opportunity to die well at home.

Thea Stein is the Chief Executive at Leeds Community Healthcare NHS Trust and a trustee of the Nuffield Trust.