“There is no more we can do for you” – changing the conversation around palliative care

Since 1948, when the NHS was introduced, the UK population has seen a 15-year increase in average life expectancy. However, a longer life does not necessarily equate to a healthier life, and consequently, people are increasingly facing longer periods of ill health.

Death is also changing. Just 20 years ago it would have been the norm to die of single organ failure, a specific cancer or an acute episode. Advances in medicine over the last 20 years have resulted in people often surviving issues that would have previously caused death.

However, the consequences of these advances have given rise to people increasingly living with several conditions, or ‘multi-morbidity’ (the presence of two or more long-term health conditions in an individual), and complexity.

In 2004, 31% lived with basic multi-morbidity, and 15% had complex multi-morbidity; however, by 2019, this had increased to 53% and 33%, respectively.

We know our health systems are struggling to cope with this shift. The 1948 NHS model was a response to a very different demographic and environment. And the challenges faced by the level of complexity we now see are the source of much debate. We have an amazing health system in this country despite its challenges, but a downstream, patch and repair-focused service is not the answer we need.

The pressure on hospitals for people who are dying is significant - 30% of all hospital beds are filled with people in their last 12 months of life, and 43% of people currently die in hospital.

The Government has responded to these challenges by establishing three core shifts for the NHS – from hospital to community, from treatment to prevention and from analogue to digital.

A commitment to a 10-Year Plan for the NHS is an extremely positive intervention, and there has also been great news for the hospice and palliative care sector, with the Government pledging £125m in grants to support sustainability and modernisation.

Improving and expanding palliative and end-of-life care is not only the right thing to do, but it can also play a key role in fixing the wider system.

We know that palliative care is poorly understood. Many people think that it is provided just to patients with cancer when treatment options for their disease have been exhausted, and the individual has a short time to live.

But palliative care is much more than this. The World Health Organisation (WHO) describes palliative care as:

Palliative care is not just delivered by the few people who work in specialist palliative care teams (those who work in hospitals, community teams and hospices). We need many more health and social care professionals to be able to take a palliative care approach. Doing this would help people to weigh up the burdens and benefits of potential treatments.

In palliative care, we often ask our patients, “What matters most to you?” This helps patients (and reminds us healthcare professionals!) to think beyond the disease they have and refocuses the conversation and treatment options around the things they want to do with the life they have left to live and the things that bring them joy.

For some, there may be a trade-off between length of life at all costs versus quality of life, but the palliative care approach helps to explore what is right for each person.

It brings focus to all the parts of what makes a person human, as well as very practical medical planning, such as how they want to be cared for, where they want to receive care and what support is needed for the people in their lives.

This approach can also help the healthcare system be more efficient. More health and social care professionals must understand this palliative care approach.

There is also a job to be done by healthcare professionals, including the hospice sector, to help the public understand how palliative care can help them and reduce the fear and mistruths that limit their acceptance of it.

If we bring these things together, this holistic approach can be so helpful for people living with multi-morbidity and complexity. It can help them to have the best quality of life possible, not just for days or weeks, but for 20 or 30 years in some cases.

The support we provide at Sue Ryder, and that of our colleagues throughout the hospice and palliative care sector, is geared towards an individual, tailored to their needs and focussed holistically on all aspects of their lives.

Our new ecosystem for palliative and end-of-life care aims to expand the support we can provide to the population. It is not just a change programme for us as a charity but a blueprint for the wider health and care system.

Let’s begin to reframe palliative and end-of-life care, recognising its role in tackling the big health challenges we face as a country and seeing it as part of the wider solution rather than having a small role to play. Maybe then we can truly reap the benefits of those advancements from the past 70 years.