These were Professor Irene Higginson’s 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 coronavirus 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. At the daily press conference on 15 April, the health secretary, Matt Hancock, said: “Wanting to be with someone you love at the end of their life is one of the deepest human instincts and it’s a moment that will be with you forever. Done right, it can help those left behind to cope and it brings comfort to those who are dying.”
However, as we know, for many relatives and loved ones of those very ill with Covid-19 in hospital or care homes, this physical presence hasn’t been possible. The news reports of nurses staying on after their shifts to be with dying patients or of hospital staff sourcing iPads to allow relatives to be with their loved ones virtually, have highlighted the possibility of compassionate care at the end of life, even in these difficult circumstances.
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 per cent 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 per cent by 2035 (compared with a 12 per cent increase in the numbers aged under 60). And by 2040, the number of people dying in England is expected to have increased by 25 per cent.
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.
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.
A recent systematic review, led by Dr Matthew Maddocks, a specialist physiotherapist working in the ARC’s palliative research theme, highlighted the benefits of this holistic approach. It looked at the effect of a very short-term breathlessness support service for people with severe lung disease, and showed the effect on psychological outcomes for people who had experienced the service was equivalent to an 11-week course of psychotherapy. Dr Maddocks says: “We now know that if you can improve quality of life and symptom management, that improves psychological wellbeing and can lead to longer life as a side effect.”
Palliative care has a distinguished history in south London. In fact, the very idea of modern evidence-based palliative medicine was pioneered here, in Sydenham, at the world’s first purpose-built hospice. St Christopher's Hospice was opened in 1967 by Cicely Saunders, a nurse, social worker, doctor and campaigner who led the UK’s hospice movement.
It was there that the philosophy underpinning palliative care – that everyone should matter at the end of their life – was developed and put into practice. Professor Higginson explains: “Whereas some specialties see not curing as failure, palliative professionals struggle if they can't get on top of a person's symptoms and their suffering. Somebody with an advanced illness will have around 13 or 14 different symptoms on average. These can include pain, breathlessness, fatigue, weakness, nausea, and psychological problems. As clinicians, we want to unravel this knot of problems. Our job is to help patients to live well, to make sure that they matter at the end of their life, and to support them and their loved ones.”
Today, a few miles north of Sydenham in Denmark Hill, you can find the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, named after the campaigner.
The Institute, which opened in 2010, has its own dedicated building (pictured) on King’s College London’s Denmark Hill campus, and is led by Professor Higginson. It is a home to a team of around 85 researchers and clinicians, and is a hub for research in this field.
In February, at one of the last physical events held at the Institute before the onset of the current crisis, more than 200 professionals gathered from across the UK to learn how patient outcome measures and data can be used to improve palliative care – a long-term project of the theme.
One attendee at the event, Dr Margaret Elliott from St Elizabeth Hospice in Ipswich, described the value to the hospice of patient-reported outcome measures, developed by the Institute’s researchers. “The good thing about the Integrated Palliative Outcome Scale is that it enables us to collect data more formally and rigorously. The changes we’ve implemented as a result are not expensive or high-tech. In fact, we’ve gone back to basics by being less reliant on drugs and spending more time with patients helping them with their breathing techniques. Another benefit has been that staff morale has been boosted. Staff feel very empowered as they can see that their work is making a difference.” (Read the full interview with Dr Elliott.)
In the weeks since that event, palliative care services across the country have been placed under severe pressure. “With more than 65,000 excess deaths, and many more people severely ill, palliative care has been stretched and has needed to respond in ways I have never seen," says Professor Higginson. "South London has been particularly badly affected. Although these are awful times, and several colleagues have been ill, palliative care is also changing fast in numerous ways.”
The ARC’s research team at the Cicely Saunders Institute responded rapidly to support the local, national and international Covid-19 effort. They realised that with the government’s focus on protecting the NHS and ensuring adequate intensive care capacity, there was a risk that palliative care services would be overlooked. They also recognised that with many people living with chronic long-term conditions shielding at home, unable to access their usual support services, there was a challenge around self-managing care at home.
In response, the team has published several rapid Covid-19 research studies, and launched new research, including a study to understand how palliative services have responded to Covid-19. They have also produced rapid new clinical resources, including recommendations for hospital clinicians to support relatives with bereavement, and guidance for patients and respiratory professionals on treatments and support for those with Covid-19, translated into 15 languages. Connected to this work, they have produced a practical guide to help people experiencing breathlessness who are unable to access secondary care, to manage their symptoms at home. This resource has been shared widely across the UK, Canada and the USA.
In addition, the team has reached out to patients, carers, family and the public to understand their experiences and to identify research priorities. In this respect, the theme’s online public forum for palliative research – the first of its kind in the UK – has been an invaluable tool in the crisis. They have also co-hosted a virtual meeting with ARC East of England as part of their NIHR joint national leadership for palliative and end of life care, bringing together clinicians and researchers from across the UK to discuss the situation.
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.
Thinking about the future of palliative care, Professor 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, Professor 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.”