10 September 2020

Read the Applied Research Collaboration South London’s blog exploring palliative and end of life care.

Nick Sarson, Communications Manager at the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) South London, explores the context of the ARC's palliative and end of life care research, how the team have supported the COVID-19 response, and the implications of the pandemic for the future of palliative care.

It used to be that death was very much a part of everyday life. Now it's become a rare thing. This means people in society have less experience of it.

These were Prof Irene Higginson’s, Vice Dean for Research (Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care) and Director of Cicely Saunders Institute, King’s College London, words when I interviewed her in early February about the ARC’s palliative and end of life care research, just a few weeks before the COVID-19 crisis hit the UK.

Since then, death has become a part of everyday life in ways few of us could have expected – most visibly, in the daily updates on the number of deaths in the UK linked to COVID-19, this measure of progress through the epidemic. 

The crisis has brought conversations about the practicalities of care at the end of life into public life.

Even before the current crisis, policymakers, commissioners and researchers were concerned about the long-term challenges of providing adequate levels of palliative care services. Most of us in the UK will need some form of palliative care before we die – researchers estimate between 74% and 96% of the UK population. With the ageing population, there will be far greater demand for these services in the future. In London, for example, the number of people aged above 80 years is predicted to rise by 70% by 2035 (compared with a 12% increase in the numbers aged under 60). And by 2040, the number of people dying in England is expected to have increased by 25%.

Improving the quality – and availability – of palliative and end of life care services is a local and national priority for health and care services, commissioners and the NHS. It is also the focus for the ARC's palliative and end of life care research over the next five years.

But what do we mean by palliative care?

At a clinical level, when someone is diagnosed with a life-limiting or terminal illness, such as dementia or cancer, they may be offered palliative care to help them live as well as possible, without pain, until they die. Although palliative care is associated with the end of life, people can be referred for it at any stage of their illness. It can also be accessed in a variety of places – at home, in hospital, care homes, and hospices.

Another feature of palliative care is its holistic approach. A patient’s psychological, practical and spiritual needs are as important as their physical needs. As a result, palliative care is a broad interdisciplinary specialism, taking in specialist nurses, doctors, psychiatrists, physiotherapists, art therapists, counsellors, occupational therapists, and carers.

Prof Irene Higginson said:

Palliative and end of life care puts the person and those important to them first, before the disease. In this way, we can consider patients in the complexity of their disease – performing a very detailed assessment of their main problems.

The disproportionate impact of COVID-19 on older people, those with underlying health conditions, such as diabetes, and on people from Black, Asian and minority ethnic groups has highlighted the priorities that drive the ARC South London’s applied research. These include the need to improve care for vulnerable and older populations, to support people living with multiple health conditions, and to address inequalities in health and social care.

The ARC’s research team at the Cicely Saunders Institute responded rapidly to support the local, national and international Covid-19 effort. The team published several rapid Covid-19 research studies, launched new research, and produced rapid new clinical resources, including advice for hospital clinicians to support relatives with bereavement. They have also produced a practical guide to help people experiencing breathlessness, shared widely across the UK, Canada and the USA.

Thinking about the future of palliative care, Prof Higginson says:

We have ageing populations, living with multiple chronic conditions. In the long term, we're going to see a big increase in the number of deaths, and we know that we don’t have enough service capacity currently. There's a big question about how we respond to this.” One approach could be greater integration with social care services, an area the theme is investigating.

In relation to the more immediate challenges from COVID-19, Prof Higginson says:

It is very clear that we need a more concerted effort to gather more data in real time, to inform the response now and in the future. This is a new disease, and we know so little about it. Current guidance is using the best evidence from a different situation. This is urgent. The number of people who have been severely ill has been very high, and although the situation in hospitals and care homes is easing now, this disease will be with us for some time.

To read the blog in full, visit the ARC South London’s website.