Research finds three quarters believe end of life care should be NHS priority

An increasing number of deaths and shortages in end of life services across the UK, coupled with unsustainable funding, have created a critical moment for improving palliative and end of life care, says end of life charity Marie Curie.
New research, led by the Marie Curie Research Centre at Cardiff University, reveals three quarters of people across the UK (77 percent) think that end of life care should be given equal priority in the NHS as care for people in any other stage of life. With that backing, Marie Curie is challenging the UK Government to 'ditch the sticking plaster' and address real reform of care at the end of life.

The Health and Care Bill, currently making its way through Parliament, provides a critical opportunity for the UK Government to improve care in England. Marie Curie is calling for a legal duty for Integrated Care Boards to commission palliative care services as well as a legal right for everyone to be offered a conversation about their personal needs, wishes and preferences for care at the end of life.

Marie Curie Chief Executive Matthew Reed said: "How we treat people in the final phase of their life is a fundamental mark of a civilised society. Every day that passes without reform leaves people living, and dying, without the care and support they need, and without their voice being heard.
"The Health and Care Bill is a rare opportunity to ensure that end of life care is given the same priority as support at any other phase of one's life. Marie Curie is calling on the UK Government to amend the Bill to require palliative care services to be available to dying people and their carers in every part of England, and to ensure that everyone living with terminal illness is offered a conversation about their personal needs and preferences at the end of life."

Sarah Candlish, 47, experienced the death of her husband (Simon) and mother (Ethel) in the first wave of the pandemic. Her mother was admitted to hospital with Covid-19 and died alone whereas her partner Simon, had stage 3 bladder cancer and died at home with the support of Marie Curie Nurses and Sarah at his side.
Speaking of her experience, Sarah said: "You should have the right to live as well as you possibly can until you die. I struggle with the guilt of my mother being alone at the end but was able to plan the funeral I knew she wanted which is some comfort. It would have been Simon's worst nightmare to die in a hospital and because I work in the NHS, I knew what support was available to us at home and knew how to ask for it.

"Patient care means just that, a patient should be cared for equally no matter at what stage of life we are at and palliative services should be funded equally as any other service, to ensure we all have an equal right to high quality personalised care and support."
The results from the survey of 8,077 UK adults, raises concerns about perceptions of end of life care and that it might not be available when it is needed. Around 60 percent of people did not agree, or did not know, whether adequate services are available.
Estimates suggest that as many as one in four people are currently missing out on palliative care[1], and during the pandemic end of life care providers raised concerns about not being treated as "frontline NHS" services.[2]

The research also reveals that:
• Seven in ten people believe their preferences around death and dying should take priority over the wishes of their next of kin or their doctor's advice - illustrating the importance of giving people living with terminal illness more of a say in the care and support that they receive
• Whilst most people think it is important to express future health and care preferences in advance of serious illness and dying, the research found that just 14 percent of respondents have done this themselves.
• Only 20 percent of people have made financial arrangements for their funeral and only 40 percent have talked to someone about whether they want their body to be buried, cremated, or donated. Amongst respondents who self-reported being in the last few years of life, a worryingly small proportion reported having made advance plans for the end of their life.

The report's Chief Investigator Professor Annmarie Nelson, Scientific Director at the Marie Curie Palliative Care Research Centre based at Cardiff University's School of Medicine said: "We asked people questions about what they understand about palliative and end of life care, their willingness to talk about their plans, their fears, and what matters in the last years and days of life. There is a huge gap between the proportion of people who say that they feel comfortable talking about death and dying, and the proportion who have actually done so. Their responses show that, as a society we have a long way to go to enable effective discussions and end of life planning, and although we are willing to have these conversations, we lack the language, and often don't follow through on our intentions to plan."

With an ageing population expected to mean a substantial increase in demand and pressure on end of life services over the next two decades, Marie Curie cautions that strains on the system and the people that deliver these vital services will only increase in coming years. By 2040 the number of people needing palliative care is expected to rise by 42 percent[3] with deaths at home expected to continue to increase by over 88 percent in England and Wales alone[4]. Without the UK Government committing to ensure that palliative care is commissioned in every part of England people will more often miss out on the support they need in the home or in a hospice.
Hospices are the main providers of specialist palliative care across the UK yet only around 30 percent of their income currently comes from the NHS and statutory sources. Charities like Marie Curie, the largest provider of palliative care beds outside of the NHS, rely on public donations from activities such as bake sales and running events to meet current and rising demand.