‘End of life care is in crisis – we need to get better at giving people a good death’

A shocking report from Marie Curie exposes how the British healthcare system is failing society’s most vulnerable members

A good death is not a given in this country. I wish it were, but it isn’t. When you work in the field of palliative and end of life care – as I have for 23 years – you come to know the difference between what it is to die well with peace, comfort and dignity and the sort of ending you wouldn’t wish on anyone. I’ve seen people left to die alone in isolated rooms in hospitals when they could have been made comfortable in their own home; I’ve known families left to fend for themselves as untrained carers while their loved one deteriorates without the medication that could have made them comfortable. 
I moved into palliative care work because I was so shocked by what I’d seen in hospitals. More than two decades later, a new Marie Curie report has cast the state of end of life care in a poorer light than ever. One in three people in England and Wales, the report reveals, experience severe pain in the final week of their life. Meanwhile, the fractures in the way we treat (or fail to treat) people in their final days seem to be woven through the whole system
The study, carried out by King’s College London, Hull York Medical School and the University of Cambridge, and funded by Marie Curie, exposed a crisis in end of life care that I have watched building for some time. It found one in five people had no contact with their GP in the last three months of their life and that an admission to A&E was all too often relied upon as a first port of call for people who could have been treated at home. It found as many as one in eight people who died in hospital had been there for less than 24 hours. Half the people surveyed were unhappy with the care their loved one received in their dying days. 
Particularly shocking was the revelation that end of life care is yet another area of medicine that is at the mercy of a cruel postcode lottery. One respondent, Kate Dobbs, 58, is living with terminal cancer. Kate was so affected by her father’s death, where a lack of support at home had meant unnecessary admissions to A&E, that she is planning to move house in order to have better access to palliative care when her own time comes. “Most people research the quality of schools when they move house,” she said. “I’m researching hospices. My biggest fear is that I get the same poor care as my father.
“With dad, we had no care at home. We had to keep going to A&E. It was awful. If it was a weekend, there were never enough staff. It was just so chaotic. At home we were left to it. My sister and I would drive huge distances late at night, completely exhausted, trying to find a chemist that had drugs for his pain.
“My stepdaughter died recently. She had a palliative care team in her home and the right pain medication ready for when she needed it. Access to care and pain control depends on your postcode. That’s why I’m moving.” 
I had a phone call from somebody a few months ago who wasn’t local to my hospice in Bradford, so there was only so much help I could offer. Unfortunately, that is the way the system currently works. Her mum had been experiencing really difficult pain and she could see her getting more poorly. Nobody was talking to her about what support she could access – she was just going backwards and forwards to GPs and other health professionals and wasn’t really being pointed in the direction of help. Palliative care needs to be part of the core business of what we do in the NHS, not an add-on that might be available if you live in the right place or can seek out the right additional care. 
For too long we have relied on topping up end of life care with charitable funding. This can’t continue – it’s not sustainable. Often patients will tell me they didn’t even know palliative care was an option. “If only we’d known about this sooner,” they’ll say, having struggled for too long without help. 
When you are in the final stages of an illness, every day counts. Every day is a day you could be spending precious time with your loved ones. It shouldn’t be a luxury to feel supported through that time. In the UK in 2024, people are brought into this world with a plan, a backup plan for that plan, and a whole team of experts ready to step in to make sure things go as smoothly as they can. We should be able to leave the world with the same level of care. 
One challenge the NHS faces is that people don’t always die between the hours of 9am and 5pm. People need care and access to medication 24/7. There aren’t the resources to cover those extra hours, meaning people simply end up in A&E, where they often die – and die alone. 
People should be able to call on their GP, a district nurse or another professional in the community whenever they need to. At the moment, there are too many gaps in that access to care. I have hospice patients whose families tell me they’ve called their surgery asking to be seen out of hours and they’ve had to wait half a day for somebody to get out to see them. The system is just so stretched. 
Others tell me they often can’t get medication when they urgently need it. That is particularly worrying, as when a person is at the end of their life, the right medication can go a long way to addressing their pain, which can in turn have a huge impact on their mental state. Pain is the thing people fear most in death, and as end of life practitioners we are managing both – the pain and the fear. 
Supporting people through their fears and managing their medication appropriately is an important part of what we do as end of life specialists to make people as comfortable as possible. 
The report also reveals that many people do not necessarily know they might die because of their illness. I’ll never forget a lady at a hospital where I worked before I moved into palliative and end of life care (in fact, her case was part of the reason why I made the leap). She had been in hospital for about a month and no one had really focused on the fact that she was dying. The team had been trying to actively treat her for various different things and there hadn’t been a conversation about the fact that she wasn’t getting better. One day, I went into the ward and she’d been moved to a side room. They had finally recognised she was dying. If only they’d spotted it sooner, they could have discussed what mattered most to her, and she and her family would have had more time to prepare. 
One day, years ago, on the way home from work, I noticed a woman staring at me on the bus. Eventually she came over. “Are you Sarah?” she asked. “I’ll never forget you. You told me that my mum was dying. Nobody else had been open with me about that. It allowed me the time to spend with my mum, to have the conversations and say the things that we wanted to say.” 
People worry about talking about death. Even healthcare professionals are more inclined to try to keep people alive than acknowledge they are dying. I’ve found people are often grateful for open and honest conversations that allow them to make all those important decisions about how they want to go. It’s unacceptable that for many people they are either not aware of what’s happening or, when it comes to it, have those decisions taken away from them. 
I had a patient recently who we knew was dying and we had made a plan to support him to die at home. When he suddenly deteriorated, more rapidly than expected, his family called 999. The paramedics tried to resuscitate him, which wasn’t what he wanted. He died at home, but did so amid chaos he desperately wanted to avoid.
It reflects so poorly on us as a society that we aren’t able to give more people the right care at the end of their life, but it doesn’t have to be like this. I’ll always remember a young lady we cared for who was referred to me for help with pain. With adjustments to her medications we were able to get her much more comfortable, but sadly she continued to deteriorate due to her underlying condition. She knew she wanted to be looked after at home and we were able to go out and see her every day as she got more poorly. One morning, she asked to sit out in the garden – as the sun came out, she died peacefully with her family at her side while her favourite song played in the background. 
We have an ageing population who are often entering old age with a range of medical conditions (where once someone might have developed lung disease and died, they might now have diabetes too, and a heart condition). That fact is unavoidable. But we know so much more now about how to help people die peacefully, whatever their illness. So now is the time to act. Now is the time to start doing a better job of giving people a good death.  
As told to Eleanor Steafel 
Anyone living with a terminal illness, or who has been affected by death, dying or bereavement, can visit www.mariecurie.org.uk or call the free Marie Curie support line on 0800 090 2309