Why we need to invest more in research on out-of-hours palliative care

Dr Florence Todd Fordham, Project Coordinator with Marie Curie’s research team, was surprised to find that very limited research has been done on out-of-hours palliative care in the UK to look at what works and how can it be delivered successfully for people living with a terminal illness.

Here, she explains the importance of round-the-clock care and why it’s this year’s theme for the annual Marie Curie Palliative Care Research Conference.

In some areas, Marie Curie's nursing teams are available outside of normal working hours to provide urgent care and support to people in their homes.

Out-of-hours care refers to services provided by health professionals outside of normal working hours. These hours are usually from 6.30pm to 8am on Monday to Friday, throughout the weekend and on bank holidays.

Having access to out-of-hours care would mean people have the support they need any time, any day of the week, 365 days a year.

The importance of 24/7 care

In an ideal world, everyone living with a terminal illness who is being looked after at home would have access to high-quality round-the-clock care that meet their needs, regardless of where they live or what illness they have.

When good out-of-hours care is in place, it can help reduce the need for inappropriate hospital or A&E admissions, and therefore reduce pressure on acute care services. Having good continuity of care is also essential to support people living with a terminal illness, and central to this is the provision of care services that are reliable, co-ordinated and available whenever, and wherever, they’re needed.

Without this continuity of care, people at the end of their lives can face unnecessary time in hospital, and experience distress that could be avoided if the right services were in place to support them at home.

A key concern for people and their families

Since 1999, Marie Curie has been investing in research on palliative and end of life care – it’s an often complex, yet under-funded, area of care in the UK. We spend around £3 million each year on research activities through our research centres, grant-giving scheme and research leads based at Marie Curie Hospices.

To make sure our research funding is spent on key issues of importance to patients, carers and clinicians, we consulted extensively with these groups of people and received more than 1,400 responses through the Priority Setting Partnership project. The project helped our team to identify what people’s concerns were that would benefit from more research.

The resulting top 10 research priorities were published in 2015. Perhaps unsurprisingly, the number one concern in that list was out-of-hours palliative care – how it could be provided so people can avoid crisis situations and be cared for in their place of choice.

Lack of research that informs practice

To understand how much research has been done on out-of-hours palliative care, I carried out a grant mapping project to find out how many current research studies in the UK are addressing this area of care. 

Given that this is such an area of concern for patients and their families, I found it surprising that very few researchers are focusing on this topic. In fact, in 2014, there were just four grants – all supported by the Department of Health through the National Institute for Health Research or Marie Curie – which funded research on out-of-hours palliative care. However, none of these current research studies are interventional – this means research that can have a direct impact on care by helping us to improve what we’re doing now.

Therefore, there’s certainly a need for more future research funding on out-of-hours care that can make a difference to people with a terminal illness and their families. 

Creating interest in research

Over the last 10 years, Marie Curie has hosted an annual research conference, jointly with the Palliative Care Section of the Royal Society of Medicine, to share the latest findings, encourage discussion and create interest in palliative and end of life care research.

The theme of this year’s conference, Round the clock: making 24/7palliative care a reality, ties in neatly with the top priority – out-of-hours care provision – that we’ve identified through the Priority Setting Partnership project.

At the conference, I’ll be giving one of six presentations, introducing research studies on 24/7 care provision, what helps and how it could be achieved to support people being cared for at home – read about one of the studies funded by Marie Curie on the role of nurses in anticipatory prescribing.

This year’s annual Marie Curie Palliative Care Conference is held on 19 October. It’s open to any Marie Curie staff members with an interest in research as well as external clinicians and researchers. Register before 13 October to book your place