Improving 24/7 palliative care in the community

This was just one of the many experiences shared by individuals with life-limiting illnesses and their informal caregivers regarding their encounters with out-of-hours healthcare. 

For those living at home with advanced illness, deterioration in health can happen at any time of the day or night. People with advanced illness and their informal carers need reliable support, available to them at any time. However, research has found that this is not the case, and the most disadvantaged in society fare the worst. 

Research in the Better End of Life project, funded by Marie Curie and conducted by the Wolfson Palliative Care Research Centre in a collaboration with Marie Curie, King’s College London, and University of Cambridge, highlights an urgent need for better and more equitable end-of-life services. 

Professor Fliss Murtagh, Professor in Palliative Care and Director of the Wolfson Palliative Care Research Centre, explained how - from her clinical experience - families often report fragmented care.

She said, “One person looked after her mother, who had dementia. She didn’t know who was responsible for various aspects of her mother’s care. The family were completely lost in this rather fragmented system.

"Palliative care services didn't think her mother was ill enough for their support, carers came and went… The family did not know who was responsible for medicines, who was responsible for catheters… They felt they had to muddle their way through."

Their story was one of many told by bereaved family members who had experience of end-of-life care with their loved ones.

The research findings

Through their research, Professor Murtagh and colleagues wanted to address these issues and improve access to end-of-life and palliative care for everyone who needs it.

The project therefore involves several different areas of work, shared with the teams at King’s College London and University of Cambridge, and with a UK-wide group of patient, family and public partners, to help shape the work and ensure optimal relevance for people with advanced illness and their families. 

Researchers at the Wolfson Palliative Care Research Centre at University of Hull are taking the lead on looking at how out of hours care is delivered across the UK, and conducting a systematic review to summarise the evidence about out-of-hours care. 

Researchers in the collaboration began by talking to the Integrated Care Boards and Care Systems that had formed in recent years. They conducted a documentary analysis studying how palliative end-of-life care was portrayed in their policies and strategies¹. Following publication of this analysis, they moved on to interviewing commissioners and other healthcare leads from all over the UK. 

This resulted in a large dataset that laid bare major gaps in out-of-hours care, and formed the basis of the published Marie Curie – The Better End of Life Report 2022. The report’s findings presented a stark reality in out-of-hours care: 

78% of areas did not consistently provide nursing services to dying people overnight at home, despite 75% of the week falling "out-of-hours"² 

69% of areas did not provide a 24/7 designated telephone line that could connect people approaching the end of life, and their carers, quickly and easily to local services³ 

Of these, 27% of areas had no designated phone line at all, while 42% had only partial coverage out-of-hours⁴ 

These findings are despite recommendations from The National Institute for Health and Care Excellence (NICE) over the last 10 years to implement a designated phone line. 

Professor Murtagh hopes that this research will influence policymakers and commissioners to recognise the enormity of this issue and shift more focus and funding towards care rather than treatments. 

“[We’ve spent] so long developing treatments for people in healthcare, that we haven't thought enough about care. So increasingly, we are finding big gaps in care that need to be addressed and that's why I think there's been the shift towards considering care more and influencing policy to improve care.” 

Professor Murtagh thinks the current state of care is only the tip of the iceberg. 

“The Department of Health and Social Care can see the demographics changing. They can see there's more older people, and (proportionately) fewer people working.

"There's also this big inequality gap still, and it's widened a lot [since Covid]. That's why we've got to do something about it.” 

Professor Murtagh recognises the importance of policymaker’s directives in setting priorities for healthcare resources, and that palliative and end-of-life care is often overlooked due to the many health priorities that policymakers have to consider. 

She acknowledges if policymakers were to give directives to prioritise palliative and end-of-life care, it would lead to a significant change in the allocation of resources, and make major improvements in care. 

A collaborative approach

The level of collaboration with Marie Curie and King’s College London has also led to engagement with key decision makers in palliative and end-of-life care. The Better End of Life report has already made an impact with policymakers, with Marie Curie securing discussion of the issue through parliamentary questions. 

The UK Government has given directives to address inequalities and "level up" healthcare, which has led to increased attention from healthcare commissioners in identifying and addressing inequalities. Professor Murtagh is finding this has started to change the conversation, with healthcare commissioners getting to understand more about where the inequalities are and how they can address them. 

Professor Murtagh said, “We've recently formed the Yorkshire and Humber Palliative Care Research Network and hosted a Commissioners’ meeting about palliative care research priorities.” 

“They know the inequalities are there, they just don't know how to solve the problem and they don't necessarily know how it quite applies in their patch. They're getting some of the national data coming in and the national evidence, but they don't really know how best to apply it. 

“We had a very good dialogue around the areas of research we need to address. We did a Dragons’ Den approach, so we had three or four research ideas that we pitched and people critiqued. And they told us what their priorities were. They've requested another meeting, please!” 

This has influenced how the Wolfson Palliative Care Research Centre shape research funding bids. It has started their conversations with Commissioners and working with them on their research priorities. 

Reflecting on the experience, Professor Murtagh explained she was really appreciative of Marie Curie’s different approach to their funding model. Traditionally in research funding, research projects will deliver on specific KPIs and produce outputs at the end.

Professor Murtagh said, “The way Marie Curie wanted to work was different; they wanted to do research which was more immediately impactful on policy and consider a much more collaborative way of working." 

Professor Murtagh acknowledges that the project has been a success because of this, and the focus on collaborative working with Marie Curie, King’s College London, and University of Cambridge.

She said, “We’ve also reassessed and iterated our work along the way. It has been both fantastically productive, and also fantastically challenging.” 

Professor Murtagh has high praise for Professor Katherine Sleeman, from King’s College London and lead researcher on the Better End of Life Care project. “I would say it's almost like having one team, really. We get on really well and we learn a lot from each other. We can work to each other's strengths. We've both got a wealth of different experience from each other.”

What is next for the Better End of Life research study?

The Better End of Life project comes to an end in December 2023.

A final piece of work is underway in the project, involving a large, representative survey of bereaved carers and relatives, to provide valuable insights into the quality of end-of-life care. 

This is an exciting development, and Professor Murtagh feels that that the results of this survey will be an important step towards improving end-of-life care for those who needed it most. 

"Most of the people affected by poor end-of-life care don't have anybody to help them; they are ill and often they are older people.

"That's what we all do in the Wolfson Palliative Care Research Centre, is try and fight the corner of the people that don't have their voices heard, because they're too sick or they're too busy caring for the people who are sick. So that's what we want to keep doing. Developing good evidence. Understanding what works, what doesn't work. And ultimately, try and get more resources for care.” 

For more information about this research, contact Professor Fliss Murtagh or visit the Wolfson Palliative Care Research Centre.

References

1. Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FEM, Sleeman K. Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved]. AMRC Open Res 2023, 4:19 (https://doi.org/10.12688/amrcopenres.13079.2

2. Pask S, Davies JM, Mohamed A, Leniz J, Chambers RL, McFarlane P, Bone AE, Barclay S, Higginson IJ, Sleeman K, Murtagh FEM. (2022, p.16), Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers (PDF). Better End of Life 2022 Research report. London (UK): Marie Curie.

3. Pask S, Davies JM, Mohamed A, Leniz J, Chambers RL, McFarlane P, Bone AE, Barclay S, Higginson IJ, Sleeman K, Murtagh FEM. (2022, p.13), Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers (PDF). Better End of Life 2022 Research report. London (UK): Marie Curie.

4. Pask S, Davies JM, Mohamed A, Leniz J, Chambers RL, McFarlane P, Bone AE, Barclay S, Higginson IJ, Sleeman K, Murtagh FEM. (2022, p.13), Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers (PDF). Better End of Life 2022 Research report. London (UK): Marie Curie.)