Urgent Reform needed to support Ambulance-Delivered End of Life Care

More than three quarters (78%) of paramedics sometimes fear doing the wrong thing when caring for people in the last year of life, new research has found.

Marie Curie, the UK's leading end of life charity is calling for urgent reform across the health and care system in England to ensure ambulance-delivered end of life care is properly supported. The call follows the publication of a study by researchers from the Universities of Southampton and the West of England and South East Coast Ambulance Service NHS Foundation Trust (SECAmb), funded by Marie Curie.

The research reveals that more than half of paramedics feel only somewhat or not confident in providing care at end of life, something they have not been commissioned, and often not specifically trained, to take on. With 670,000 people dying in the UK each year and demand for palliative care expected to rise by 10 per cent over the next ten years, the charity warns that paramedics are increasingly becoming frontline providers of end of life care, often without the joined-up systems, training, essential medicines access or information they need.

Joanne Hynan, whose husband died last year following a brain tumour diagnosis, described the challenges of relying on ambulance services during Mat's final months:
"My husband wanted to die at home and that is what I fought for him. However, the constant battle for this to happen safely for him was at times exhausting.

"Waiting for someone to help me out of hours was a lonely and scary time because of the helpless feeling of not knowing what to do for the best when seeing a loved one suffering. Unfortunately, on a couple occasions I had no one call me back (from the out of hours service) at all, so on those nights I had to call 999 for a paramedic to come to the home.

"The emergency medical technicians that arrived at our home during the night were always kind and supportive, but often talked about their experiences of epilepsy rather than having experience of the complications of brain tumours and what these can cause.

"I remember one EMT in training looking very nervous about all of Mat's medications and documents, needing reassurance from colleagues that Mat's ReSPECT Plan said he wanted to die at home; which was clearly overwhelming for her to see.

"I definitely think palliative training should be mandatory for paramedics and ambulance crews to support the patient and their families with respect and dignity."

The findings highlight that 80 per cent of paramedics at least sometimes lack access to necessary medicines, while 74 per cent cite missing charts as a barrier to administering them. Nearly half never or rarely know a patient's end of life status before arrival, and 77 per cent often or always lack access to advance care planning documents. Out of hours access to GPs, nurses, and palliative care professionals is frequently limited, leaving paramedics isolated at critical moments.

Dr Natasha Campling, Associate Professor at the University of Southampton and lead author, said:

"Our research highlights paramedics play a vital role providing end of life care in frequently challenging circumstances. Paramedics are often underprepared for the complexities of palliative care, with variable access to resources like patient records, essential medications and timely clinical advice. These gaps can lead to distress not only for patients and their families, but also paramedics who are working hard and with compassion to provide care in challenging circumstances."

Marie Curie is calling for England-wide improvements in ambulance-delivered palliative and end of life care, including training for all paramedics, improved access to 24/7 specialist advice lines and essential medicines, and stronger collaboration across services, with enhanced digital record sharing between health and care services, ambulance trusts and hospices, to make sure paramedics have access to patients' medical histories and advance care planning documents. Crucially, the charity is urging the UK government to support paramedics in the delivery of end of life care and for the forthcoming 10 Year Workforce Plan to include palliative and end of life care training for all paramedics.

Dr Sam Royston, Executive Director of Research and Policy at Marie Curie, said:
"It is deeply concerning that there are so many barriers to paramedics giving people at the end of life the support and medications they need in their own home. With winter fast approaching and pressure mounting across emergency services, Marie Curie are deeply concerned that without urgent action, thousands of people will be left without the compassionate, informed care they need in their final days.

We are calling on the UK government to ensure that paramedics are no longer left to navigate end of life care in the dark but have the training, access to medicines and patient records required to support dying people well."

Jen Scott-Green, End of Life Care Lead at South East Coast Ambulance Service NHS Foundation Trust, said:

"This study highlights variation across England in palliative and end of life care, as well as common themes for improvement. At SECAmb, we have been working on improving Palliative and End of life care with system partners for a number of years and are currently developing a new Model of Care.

In addition to this, the National Ambulance Service EOLC Leads Clinical Forum brings together expertise from across the country and we will continue to strive for clinical excellence in our field. It is clear within the study findings ambulance clinicians deliver kind, compassionate care in difficult circumstances. We look forward to continuing to work collaboratively on improving care for patients and families when they need us most."

Anna Parry, Managing Director of The Association of Ambulance Chief Executives, said:
"We are keen to further refine the contribution of paramedics to end of life care to help ensure patients who want to remain at home and die at home are supported to do so. We will continue to work with palliative and end of life specialists to support integration and learning, and ultimately, an enhanced experience for patients."