Excellent end of life care is possible, but our new report shows too few are getting it

We've just published the latest research from our Better End of Life programme, Time to Care, and the picture it paints of patchy and inconsistent end of life care is a rallying cry for all of us to take urgent action to improve the lot of dying people and their loved ones.

This research is the largest nationally representative survey of the quality of end of life care in the UK in almost a decade. Major changes have taken place since the VOICES survey back in 2015 – particularly the Covid-19 pandemic, and the shift towards more deaths taking place in the community instead of in hospital. So it was important to properly understand the current state of end of life care in England and Wales.

We found that more than one in three dying people were severely or overwhelmingly affected by pain, with more than a third feeling depressed most or all of the time during their final week of life. And we know from more important new research, Public attitudes to death, dying and bereavement in the UK Revisited – published this month by the Marie Curie Research Centre at Cardiff University – that being free from pain is one of the key priorities for people at the end of life.

Most end of life care occurs in the community, with 64% of people spending most of their last three months of life at home, and 24% in a care home. But too often people are forced to use emergency services, with over half having to call an ambulance and visit A&E at least once, particularly out of hours. Experiences of dying in hospital were sometimes distressing, with over a third having no friends or family present in their final moments of life.

Half of those surveyed were unhappy with at least one aspect of the care received by the person who died. And one in nine of those people went on to make a formal complaint. Recognition that their loved one needed palliative care came too late for many, and they did not know who to contact or what care was available. Lack of communication was a common source of frustration.

A shortage of staff across health and care settings means that they often do not have enough time to provide adequate care for people at the end of life. Although most people who died did have contact with health and care professionals in the community, nearly one in five people had no contact with a GP in the last three months of life.

Unpaid carers – usually family and friends – are being left to plug the gaps in professional end of life care, despite feeling unprepared and lacking in the knowledge and skills needed to care for someone at end of life well. And that lack of a safety net and support for carers continues through bereavement. One in six of those in our survey met the clinical criteria for "disturbed grief" (when intense symptoms of grief and difficulties in coping with life do not start to ease more than six months after a bereavement), but 71% of those people have not used bereavement support services in the years since the death, creating a risk of damaging long-term consequences for their own lives.

It's easy to feel overwhelmed in the face of this bleak picture; but working at Marie Curie means I know that it's possible to provide truly excellent end of life care, whatever the illness. I see our nurses, healthcare assistants, doctors and other experts doing just this, day and night, in our hospices and in people's own homes across the UK.

Patchy and inconsistent end of life care is not inevitable. Alongside the shocking findings of this research, I want to highlight some brilliant Marie Curie services that are working with the NHS and other partners to ensure everyone has the best possible quality of care at the end of life.

Our IMPACT hub in Liverpool provides a single phone number so people can access a whole range of local palliative and end of life care services in a co-ordinated way. And our REACT service in Bradford Royal Infirmary is helping local people get the care they need close to home instead of waiting hours in A&E and having to be admitted to hospital.

We also provide much-needed support to anyone struggling to navigate grief. Our free Bereavement Support Service provides ongoing telephone support from a trained volunteer, giving people a confidential space to discuss their emotions and experiences.

These kinds of high-quality end of life care and support should be available to everyone who needs them at the end of life and through bereavement. That's why we've been at the recent party conferences, talking to politicians about the urgent action to fix end of life care. Thanks to the brilliant work of our Marie Curie campaigners, we had our highest ever number of MPs coming to meet with us and explore how they can help improve end of life care.

I was personally really encouraged by the commitment these MPs showed to fixing end of life care in conversation. But now we need them to turn their words into concrete actions.

We're calling on the Government to introduce a national strategy for palliative and end of life care that guarantees 24/7 access to local palliative and end of life care services for everyone who needs them. We also want a new funding solution to transform these services and reduce over-reliance on charitable fundraising to cover the costs of services provided by Marie Curie and other providers, as well as a whole range of other reforms which you can read about in our key policy recommendations.

Palliative and end of life care is arguably more prominent than ever before, but, as our Chief Executive Matthew Reed recently wrote, much of the public debate is too narrowly focused on whether or not to change the law on assisted dying.

Our priority is to ensure that action is taken to fix end of life care for both current and future generations, so that the patchy and inconsistent care shown in this survey is consigned to the history books.

All rights reserved. Contact stories@mariecurie.org.uk for more information.