“End-of-life care is in crisis: we need to improve to offer people a good death”

In this country, you can’t take dying well for granted. I wish you could, but you can’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 dying well, in peace, with comfort and dignity, and the kind of ending you wouldn’t wish on anyone. I’ve seen people left to die alone in isolated hospital rooms when they could have been comfortable in their own home; I’ve met families who have been left to fend for themselves as untrained caregivers while their loved one deteriorates without the medication that might have provided comfort.

I moved into palliative care work because I was so shocked by what I had seen in hospitals. More than two decades later, a new Marie Curie report has left the state of end-of-life care in worse shape than ever. According to the report, one in three people in England and Wales suffers severe pain in the last week of their life. Meanwhile, fractures in the way we treat (or fail to treat) people in their final days appear to be woven throughout the system.

The study, carried out by King’s College London, Hull York Medical School and Cambridge University, and funded by Marie Curie, exposed a crisis in end-of-life care that I have seen growing for some time. It found that one in five people had had no contact with their GP in the last three months of their life and that A&E admission was too often relied upon as a first option for people who could have been treated at home. It found that up to one in eight people who died in hospital had been there for less than 24 hours. Half of the people surveyed were dissatisfied with the care their loved one received in their final days.

Particularly shocking was the revelation that end-of-life care is another area of ​​medicine that is at the mercy of a cruel postal lottery. One respondent, Kate Dobbs, 58, is living with terminal cancer. Kate was so affected by the death of her father, where a lack of support at home had meant unnecessary admissions to A&E, that she is planning to move house to have better access to palliative care when her 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 will get the same poor care as my father.

“With Dad, we had no medical care at home. We had to go to the emergency room constantly. It was horrible. If it was a weekend, there was never enough staff. It was chaos. At home, we were left to our own devices. My sister and I would drive huge distances late at night, completely exhausted, trying to find a pharmacy that had medication for her pain.

“My stepdaughter recently passed away. She had a hospice team in her home and the right pain medication ready when she needed it. Access to care and pain management depends on your zip code. That’s why I’m moving.”

A few months ago I received a phone call from someone who didn’t live near my hospice in Bradford, so couldn’t offer much help. Sadly, that’s how the system works at the moment. Her mother had been in very bad pain and was seeing her condition getting worse. No one was talking to her about what kind of support she could access – she was just going back and forth to GPs and other health professionals and no one was telling her where to go for help. Palliative care should 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 the right extra care.

For too long we have relied on funding from charities to supplement palliative care. This cannot continue – it is not sustainable. Often, patients tell me that they did not even know palliative care was an option. “If only we had known about this before,” they say, having struggled for too long without help.

When you are in the late 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 during that time. In the UK, in 2024, people come into this world with a plan, a back-up plan for that plan, and a whole team of experts ready to step in and make sure everything goes as smoothly as possible. We should be able to leave this world with the same level of care.

One of the challenges facing the NHS is that people don’t always die between 9am and 5pm. People need care and access to medicines 24/7. There are no resources to cover those extra hours, which means people simply end up in A&E, where they often die, and they die alone.

People should be able to call their GP, district nurse or other community professional whenever they need to. At the moment, there are too many gaps in that access to care. I have palliative care patients whose families tell me they have called their surgery to ask to be seen out of hours and have had to wait half a day for someone to come out to see them. The system is at capacity.

Other people tell me that they often can’t get medication when they urgently need it. This is especially worrying as when a person is at the end of their life, the right medication can go a long way to relieving pain, which in turn can have a huge impact on their mental state. Pain is what people fear most in dying, and as end-of-life care professionals, we are dealing with both: pain and 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 feel as comfortable as possible.

The report also reveals that many people don’t necessarily know that they may die from their illness. I’ll never forget a woman in a hospital where I worked before I moved into palliative and end-of-life care (in fact, her case was part of the reason I made the jump). She had been hospitalized for about a month, and no one had really focused on the fact that she was dying. The team had been actively trying to treat her for a number of different things, and the fact that she wasn’t getting better hadn’t been discussed. One day, I walked into the ward and she had been moved into a side room. They had finally acknowledged that she was dying. If only they had caught it sooner, they could have talked about what mattered most to her, and she and her family would have had more time to prepare.

One day years ago, on my way home from work, I saw a woman staring at me on the bus. Eventually she came up to me and asked, “Are you Sarah?” “I’ll never forget you. You told me my mother was dying. No one else had ever been honest with me about that. That allowed me to spend time with my mother, have conversations, and say the things we wanted to say.”

People are worried about talking about death. Even healthcare professionals are more likely to try to keep people alive than to acknowledge that they are dying. I have found that people often appreciate the open and honest conversations that allow them to make all those important decisions about how they want to move forward. It is unacceptable that many people are not aware of what is happening or, when the time comes, are deprived of those decisions.

I recently had a patient who we knew was dying and we had made a plan to help him die at home. When his condition suddenly deteriorated, more quickly than expected, his family called 999. The paramedics tried to resuscitate him, which was not what he wanted. He died at home, but he did so in the midst of the chaos he desperately wanted to avoid.

The fact that we are unable to offer more people appropriate end-of-life care is a poor reflection on our society, but it doesn’t have to be that way. I will always remember one young woman we cared for who was referred to me for help with her pain. With adjustments to her medication we were able to make her much more comfortable, but sadly she continued to deteriorate due to her underlying condition. She knew she wanted to be cared for at home and we were able to go out to see her every day as she got worse. One morning she asked to sit in the garden – as the sun came up she died peacefully with her family by her side as her favourite song played in the background.

We have an ageing population that often enters old age with a range of medical conditions – previously someone might have developed lung disease and died, now they might also have diabetes and a heart condition. That fact is unavoidable, but we now know much more about how to help people die peacefully, whatever their disease. 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, is welcome to visit www.mariecurie.org.uk or call the Marie Curie free helpline on 0800 090 2309

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