Better ‘out of hours’ care and support for terminally ill rated top research priority

The results from an extensive 18-month public consultation were revealed at the Palliative and End of Life Care Research Summit, hosted by Public Health England’s National End of Life Care Intelligence Network, and, NHS England.

Over 1,400 people in the last years of life, current and former carers, and health and social care professionals participated in the Palliative and end of life care Priority Setting Partnership, initiated by Marie Curie and independently overseen by the James Lind Alliance, a non-profit making initiative, hosted by the National Institute for Health Research, to determine the most important unanswered questions (i.e. gaps in existing evidence) that could improve overall care and experiences. 

Top of the list, narrowed down from a ‘long list’ of 83 questions, was identifying the best ways of providing care outside of working hours to avoid crises and help patients to stay in their place of choice. This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families. This was followed in second place by questioning how access to palliative care services can be improved for everyone regardless of where they are in the UK, and, in third place, what are the benefits of Advance Care Planning? 

Claire Henry, Chief Executive of the National Council for Palliative Care, said: “Every minute someone in the UK dies, but too many people still aren’t able to get the end of life care and support that is right for them. That’s why understanding about and learning from people’s experience of end of life care is so important, something which is rightly at the heart of today’s important report.

"By setting out the top unanswered questions in palliative and end of life care, we hope that these findings will help shape research priorities and make a significant contribution to improving the care and support that is available to people who are dying and their friends, families and carers.”

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View the Palliative and end of life care Priority Setting Partnership final report

View the Palliative and end of life care Priority Setting Partnership executive summary