End-of-life care: can it be everyone's business?

There is a growing mantra that end-of-life care is ‘everybody’s business’, but when a mantra takes hold in the devotee it can induce an altered state of consciousness. Professor David Clark argues that it may be time for a reality check.

There is a growing mantra that end-of-life care is ‘everybody’s business’. I have been known to repeat it myself. But when a mantra takes hold in the devotee it can induce an altered state of consciousness. As the ‘everybody’s business’ theme picks up momentum, it may be time for a reality check.

There can be no doubt that globally we are facing a largely unheeded tidal wave of death, dying and bereavement. Currently, about 56 million people die each year around the world. Driven by population growth and ageing, that number is estimated to approach 90 million in the coming decades. How will the world sustain a historically unprecedented level of care needs as people die on this scale?

The recent report of the Lancet Commission on pain and palliative care suggests global society is inadequately prepared. In particular, where the need is greatest – in the low- and middle-income countries where 80% of deaths occur – infrastructures for health and social care at the end of life are frequently inadequate and access to pain management is highly uncertain. Indeed, the commission estimates that worldwide 62 million people every year are in need of pain and palliative care interventions.

Beyond health and social care

In the UK we have some highly developed systems for palliative and end-of-life care. The Economist Intelligence Unit has twice declared that Britain is the best place in the world to die

We are proud of our hospices and the contributions they have made to new approaches, to such an extent that strategies, guidelines, commitments and frameworks now exist across the jurisdictions of the UK, all bent on improving care for patients and families at the end of life.

Creeping into these documents in recent years has been the suggestion that meeting emerging care needs cannot be the job of the health and social care system alone. Ideas have developed to promote ‘compassionate communities’, ‘advance care planning’, ‘death awareness’ and ‘before I die’ resolutions.

For 50 years hospices have faced the criticism that they merely offer a bit of heaven for the fortunate few and many palliative care services struggle to get beyond a preponderance of patients with cancer.

Family members and lay carers are urged to feel more empowered about how they can care for their dying loved ones. The overriding message from this perspective is that ‘top down’ institutional models are not working and that we need to look for ‘bottom up’ solutions to obdurate problems.

Some of these initiatives have inspiring leaders. I am tempted to see a new charismatic ‘turn’ in the evolution of modern end-of-life care in Britain, rekindling some of the passion seen in the work of Cicely Saunders and her collaborators. This ‘new public health’ approach, inspired by declarations like Alma Ata and Ottawa, calls for a population-based, ecological model that puts people and capacities, rather than professionals and deficits, at the centre.

Can all of this help us with our current dilemmas? I believe the answer is: ‘only at the margins’. For 50 years hospices have faced the criticism that they merely offer a bit of heaven for the fortunate few and many palliative care services struggle to get beyond a preponderance of patients with cancer.

The ‘compassionate communities’ movement, despite 20 years in genesis, seems yet to have reached a scale commensurate with the needs it champions. For those lucky enough to come into contact with such interventions, there are likely to be individual benefits. But what about the greater majority, sometimes referred to as the ‘disadvantaged dying’?

It is the principle of justice, and not choice, that should prevail when it comes to accessing the best available care at the end of life.

We know that one-third of people in hospital on any one day are in the last year of life, and many of these are older and frail. Likewise, and despite a modest recent upswing, the number of people dying at home has been in decline for decades. By contrast, death in a care home of one sort or another is becoming increasingly common. Now is not the time to abandon the institutional commitment to care that was built up by the very baby boomers that today make the most demands upon it. 

‘Compassionate communities’ may be easier to visualise than to realise. Ultimately, in the west a heavy burden will continue to fall upon professional services. But they in turn must adapt and change accordingly. And there’s the rub.

At the moment our publicly funded health and social care services are striving valiantly to offer dignified, personalised care at the end of life using a ‘choice agenda’ that promotes an individual’s right to determination over the place and manner of their end-of-life care. It is a noble goal, but it is not the principle upon which the welfare state was founded. Nor is it likely to succeed in the current climate. It is therefore the principle of justice, and not choice, that should prevail when it comes to accessing the best available care at the end of life. We need the very best that can be provided for the greatest number.

This means being more realistic about what public services can provide and the expectations that we have of them. Certainly there is much room for improvement. But the Care Quality Commission reports on hospital end-of-life care can be read positively, though they are often described negatively. Sixty per cent of hospitals were graded outstanding or good in a 2016 report and only 4% were inadequate. There is plenty to build on here. The health and social care system is part of a welfare state first articulated in 1942 on utilitarian foundations. It famously promised care from the cradle to the grave. We abandon or substitute for it at our peril. Death may be ‘everyone’s business’, but the most geared up and resourced provider of help continues to be the National Health Service.  

Professor David Clark is professor of medical sociology at the University of Glasgow’s School of Interdisciplinary Studies in Dumfries. He also leads the Glasgow End of Life Studies Group, which he founded in 2014.

This article appears in the February 2018 'End-of-life care' issue of Commentary.