Shocking research organised by Marie Curie, the end of life charity, has found a crisis in palliative care. Traumatised families are forced to watch their loved ones die in agony
One in three people in England are dying in pain or distress, a major new study shows. End of life charity Marie Curie has published their shocking research which highlights a crisis in palliative care.
They say about 170,000 people in England every year spend their final days in ‘pain, distress or without vital support’ that should be available to everyone at the end of life. They say by 2050, that could rise to more than 212,000 people dying without the care they need.
This is the first major study in over a decade and was led by researchers at King’s College London and University of Hull, with contributions from the University of Edinburgh, and funded by Marie Curie.
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Families are now urging the Government to stop the “hell” their loved ones have been going through in their final days.
Zoe Cooney, 43, from Chesterfield, Derbyshire, told how her mum pleaded and begged for help.
“It was totally traumatic and something we will never forget or get over. It was just hell. I think the ministers should go and see people in their final days and see that people are not passing away peacefully.”
Describing the heartbreak of watching her mum, Karen Cooney, 65, suffer, she said: “She was saying; ‘Can you help me, can you stop the pain? I didn’t think it was meant to be this painful.’ They always say we can make you comfortable but it doesn’t happen.”
She said her mum’s final hours came during the April bank holiday weekend last year and they were told by the hospital, they could not get her a place in the local hospice.
“Some of the nurses were very young ones, they just kept apologising, they generally didn’t know what to do. It was not a palliative ward and we were all just stood there shocked,” she said.
“She was still really aware of what was going on and she was screaming and begging for help. She would look like she was dozing off, and then she’d just wake up, totally distressed, thrashing around and we just said to them: “can you not give us something like sedation?”
“She had a syringe driver but it obviously wasn’t working and we kept saying: “can you get somebody to come and re-evaluate her?” And the response was just ‘nobody’s available because it’s bank holiday’…everything seemed to be impossible because it was a bank holiday – as if people don’t die on bank holidays!
“She was in so much distress for hours and hours and hours up until 2am in the morning when she passed away.”
Zoe’s mum had cervical cancer which had spread and finally after weeks of agony, she told her family ‘I’m going’ just before she passed away.
“I could see her face was white and I knew the life was draining from her. I just held her hand. It was like she was choking on the secretions. “
Breaking down in tears, Zoe said: “I just feel so bad she suffered the whole time and I just couldn’t take the pain away,
She suffered right to her last breath. I can’t understand how we let this happen. This shouldn’t be happening?”
Matthew Reed, Chief Executive of Marie Curie, said: “The evidence is clear. People are reaching the end of their lives without basic palliative care, causing pain and distress that is often avoidable – and the situation is getting worse.
“The UK Government has the evidence it needs, it must act. Dying people cannot afford further delay.”
He points out the Government is developing a new framework to improve end-of-life care which was due to be published in Spring but has been delayed until the autumn.
“The Modern Service Framework is a critical opportunity to fix this, but only if it delivers guaranteed 24/7 palliative care in every community, backed by proper funding.”
Marie Curie is urging the UK Government to include three essential commitments in the Modern Service Framework: round the clock care. They want to see every community with “round-the-clock advice and coordination” – including through specialist telephone service with access to essential medicines when they’re needed most.
They also want to see care is available in a place close to them. “Palliative care being fully embedded in every neighbourhood health service in England.”
And “quality support from all healthcare providers:”. That means compulsory palliative and end of life care training for all health and care staff, including GPs, paramedics, and emergency teams “so they feel confident supporting people towards the end of life.”
A spokesperson for the Department of Health and Social Care said: “No one should face the end of life in pain or without the support they need and we know there are unacceptable gaps in access to palliative care.
“Our Modern Service Framework will help tackle variation, strengthen the workforce and expand access to 24/7 support, so patients and families can rely on compassionate care when it matters most.
“This builds on the biggest investment in hospices in a generation – £125 million – as we shift more care into the community and ensure more people can receive high-quality, dignified care closer to home.”
