Why ambulance-led end of life care needs urgent reform

Too often, they have to take them to A&E, an outcome that hasn’t been designed, but exists by default, as gaps in community provision widen and families turn to the only service they know will answer the phone.

Ambulances symbolise urgency and emergency. Yet for people in the last year of life, what they often need most is planned and compassionate support, either at home or in community settings – precisely the care our current system struggles to deliver.

Our latest research paints a stark picture of what happens when end of life care collapses into emergency response. More than three quarters of paramedics (78%) say they sometimes fear doing the wrong thing when caring for dying people. That fear is not a reflection on these people; their dedication and professionalism are not in doubt. It reflects the reality that paramedics have not been commissioned, and often not specifically trained, to deliver palliative care, yet are increasingly asked to do so under extreme pressure.

More than half report feeling only somewhat confident or not confident at all to carry this out. At the same time, demand for palliative care is rising sharply. With 670,000 people dying in the UK each year and need expected to grow by 10 per cent over the next decade, ambulance clinicians are becoming de facto frontline providers of end of life care, without the joined-up systems, medicines access or information they need.

Behind these statistics are dying people and their families, who are not getting the care they have a right to expect. Joanne Hynan, whose husband Mat died at home following a brain tumour diagnosis, captured both the compassion of ambulance crews and the fragility of a system that often leaves families to fend for themselves. “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,” she told us.

When calls to out-of-hours services went unanswered, she had no option but to dial 999. “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.”

On one occasion, she recalled a trainee emergency medical technician “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.”

Her experience reflects the challenges paramedics face daily. Eighty per cent say they at least sometimes lack access to the medicines they need. Seventy-four per cent report missing charts as a barrier to administering drugs. Nearly half rarely or never know a patient’s end of life status before arrival, while 77 per cent often or always lack access to advance care plans.

When paramedics arrive in the dark – without patient histories, medication summaries, or clarity on a person’s goals and wishes, they are forced to provide end of life care without the knowledge they need. It is hardly surprising that, without key information, anxious crews take patients to hospital. Yet for many, hospital is not where they want to be in their final days.

The emotional toll on clinicians is profound. As Dr Natasha Campling, lead author from the University of Southampton, explains: “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.” Her words highlight that reform must focus not just on systems, but on supporting the workforce who are holding those systems together.

What emerges clearly from this research is that ambulance-delivered end of life care is not a standalone issue – it is a symptom of wider fragmentation. When people cannot access palliative care at home, or when community services can’t respond, they are pushed towards emergency services by default. And paramedics, working with complete dedication, are left to manage avoidable crises on their own.

That is why Marie Curie is calling for a set of England-wide improvements that could transform this picture. These include mandatory palliative and end of life care training for all paramedics; improved access to 24/7 specialist advice; reliable access to essential medicines; and, crucially, enhanced digital record-sharing so paramedics never again arrive at a patient’s home without knowing who they are caring for or what that person wants.

The ambition is shared across the ambulance sector. In the process of carrying out this research, ambulance trust leaders told us time and again about the importance of better integration, stronger national standards and a system that reflects the central role paramedics now play in supporting dying people. Their commitment is clear. What is missing is a national plan that matches it.

End of life care should never be a last-minute scramble mediated by emergency services. With the right reform, it can be coordinated, dignified and true to the wishes of the person receiving it. Paramedics want to deliver that care. Families and patients deserve it. Our health system must enable it.