Wales reaches a ‘critical moment’ in care for the dying. Research backs Marie Curie’s call for priority to be given to palliative and end of life care, as charity lead second National Day of Reflection.
The devastating impact of the pandemic on health and care services, increasing number of people dying each year in Wales, and a lack of clarity around the strategic direction for end of life services, have created a critical moment for improving palliative and end of life care, says end of life charity Marie Curie, as it leads the second National Day of Reflection.
A report featuring newly published findings from research led by the Marie Curie Research Centre at Cardiff University, reveals four out of five people across Wales (80 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 and the Motor Neurone Disease Association are urging people to sign a petition calling on the Welsh Government to stick to its commitment of publishing a replacement to the End of Life Care Delivery Plan, which comes to an end this month*.
As well as publishing a replacement to the plan, the Welsh Government previously committed to a new overarching End of Life Care Programme, and Marie Curie expects it to include a “clear and bold implementation plan” including a timetable, a commitment to sustainable funding and a sufficient number of staff to enable successful delivery. It must also support integrated services and meet the needs of all people in Wales who would benefit from palliative care.
The results from the survey – which was UK wide, but included more than 2,000 people from Wales – also found that there is a huge gap between the high number of people who say they are comfortable talking about death and dying with their loved ones and the number who have done so. While nearly all (92 per cent) think it is important to express future care preferences in advance of serious illness, just 16 per cent have done this.
During this year’s National Day of Reflection, the charity called on people to connect and remember those who have died over the course of the pandemic, while also encouraging people to have those important conversations with loved ones.
Angie Owens, a Marie Curie Healthcare Assistant in North Wales, whose father died in October, agreed that more open conversations are needed. She said: “Death is something that happens to us all, so it’s something you have to talk about. I think a Reflection Day or anything to get people to talk about it is fantastic, particularly talking about wills or insurance or funeral plans. My dad had nothing prepared, so I’ll be paying for a long time.
“I also lost my sister 12 years ago – she was 38. But it’s something we hadn’t talked about with her, we have no idea what she wanted, so we hope we did the best we could.”
Marie Curie also calls on the Welsh Government to adopt a public health approach to end of life and encourage more open conversations by tackling taboos and seeking to improve public understanding of the language around palliative and end of life care.
The survey results raise concerns about perceptions of end of life care and that it might not be available when it is needed. More than half of people in Wales 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 , and during the pandemic end of life care providers raised concerns about not being treated as “frontline NHS” services.
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
- Being free of pain, with loved ones, and dying with dignity are people’s top priorities for their end of life experience, with people more likely to prioritise these over dying at home, which could have important implications for measuring how well services are performing and meeting people’s needs and wishes.
- More than seven in ten (70 per cent) of people fear being helpless and dependent more than they fear death – reinforcing the importance of doing everything we can to ensure that people have their voice heard in the care they receive.
- Only 20 percent of people have made financial arrangements for their funeral and fewer than half have talked to someone about whether they want their body to be buried, cremated, or donated.
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 with deaths at home expected to continue to increase by over 88 percent in Wales and England alone .”
Marie Curie Head of Policy and Public Affairs in Wales, Lowri Griffiths, said:
“How we treat people in the final phase of their life is a fundamental mark of a civilised society.
“The End of Life Care Delivery Programme is an 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 Welsh Government to publish the programme implementation plan in a clear and bold way and sooner than later, to ensure that everyone who dies in Wales has their needs met at end of life.
“Patient care means just that, a patient should be cared for equally no matter at what stage of life they 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. In order to support this, we must also begin to have more open conversations around death and dying in wider society.”
Hospices are the main providers of specialist palliative care across the UK. In Wales in 2018-19 only around 15 percent of their income came comes from the NHS and statutory sources. However, during the pandemic, hospices in Wales received £13.8 of emergency funding from the Welsh Government to help support the delivery of front line care and have also recently received an inflationary lift in funding in recognition of the vital role they play in supporting people at end of life.
However, charities like Marie Curie, the largest provider of palliative care beds outside of the NHS, continue to rely on public donations from activities such as bake sales and running events to meet current and rising demand.
Public Attitudes to Death And Dying in the UK Marie Curie Palliative Care Research Centre, Division of Population Medicine, Cardiff University School of Medicine. October 2021. The report is available to download from http://www.mariecurie.org.uk/policy/publications
Opinium surveyed 8,077 UK adults: England 5,076, Wales 2,005, Scotland 485, Northern Ireland 506.Opinium surveyed 8,077 UK adults: England 5,076, Wales 2,005, Scotland 485, Northern Ireland 506.
*The current End of Life Care Delivery Plan comes to an end 31 March 2022. This does not mean that palliative and end of life care services will no longer be commissioned or delivered across Wales, but that the overarching strategic direction of end of life care services will be unclear going forward. We are therefore calling for urgent replacement of this Delivery Plan (Welsh Government are naming these replacements plans ‘Quality Statements’, not delivery plans.) Quality statements form part of the enhanced focus on quality and will be integral to the future planning and accountability arrangements for the NHS in Wales.
Marie Curie is the UK’s leading end of life charity. The charity provides essential frontline nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death and bereavement.
It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.
The National Day of Reflection on 23 March 2022 is a day to support the millions of people who’ve been bereaved during the pandemic and to reflect on the lives of the people who have died. Find out more and pledge to take part at mariecurie.org.uk/daytoreflect
Cardiff University is recognised in independent government assessments as one of Britain’s leading teaching and research universities and is a member of the Russell Group of the UK’s most research intensive universities. The 2014 Research Excellence Framework ranked the University 5th in the UK for research excellence.
Among its academic staff are two Nobel Laureates, including the winner of the 2007 Nobel Prize for Medicine, Professor Sir Martin Evans. Founded by Royal Charter in 1883, today the University combines impressive modern facilities and a dynamic approach to teaching and research. The University’s breadth of expertise encompasses: the College of Arts, Humanities and Social Sciences; the College of Biomedical and Life Sciences; and the College of Physical Sciences and Engineering, along with a longstanding commitment to lifelong learning.
Cardiff’s flagship Research Institutes are offering radical new approaches to pressing global problems. More at http://www.cardiff.ac.uk
The MND Association was founded in 1979 by a group of volunteers with experience of living with or caring for someone with MND. We are the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.
About motor neurone disease (MND):
• MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
• It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.
• It kills a third of people within a year and more than half within two years of diagnosis.
• A person’s lifetime risk of developing MND is around 1 in 300.
• Six people per day are diagnosed with MND in the UK.
• It affects up to 5,000 adults in the UK at any one time.
• It kills six people per day in the UK, this is just under 2,200 per year
• It has no cure.