Around 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.
This is the first major study in over a decade to estimate unmet palliative care need among people at the end of life, led by researchers at King's College London and Hull York Medical School, University of Hull, with contributions from the University of Edinburgh and funded by Marie Curie.
Findings show that almost one in three people each year die with unaddressed symptoms and concerns, in pain or distress and with little or no access to GP support, despite evidence that the right care would help them. Without action to improve care, the situation will get worse; unmet palliative care need is expected to rise by 21% over the next 25 years. This means that by 2050, over 212,000 people each year in England could die without the care they need.
The UK government had committed to publishing a Palliative and End of Life Care Modern Service Framework in spring which has now been delayed until summer. This leaves people without the support they need at the end of their life. Jo from Leicestershire struggled to secure night care for her husband when he was terminally ill: "It was constant phone calls, just trying to get things sorted for my husband. I was desperate for some night-time support, scared, exhausted and completely drained, knowing I still had to care for him the next day. He wanted to die at home and I fought for that. But fighting to make it happen safely, all the time, was utterly exhausting."
Our research shows that many people are reaching the end of their lives with distressing symptoms that aren't being addressed, and without feeling adequately supported by primary care. We also found that the number of people experiencing unmet needs is likely to rise in the years ahead. At a time that is already profoundly difficult for individuals and their families, everyone should be able to access the care and support they need.
Dr Anna Bone, study lead and Lecturer in Epidemiology and Palliative Care at King's College London
Professor Fliss Murtagh, Professor of Palliative Care at Hull York Medical School, Director of the Wolfson Palliative Care Research Centre said: "These findings are a stark warning that our systems are not meeting the needs of a growing older population as they reach the end of their lives. What we see from the evidence is not just gaps in care but system-wide limitations that repeatedly fail people in their final months."
Matthew Reed, Chief Executive of Marie Curie, said: "The evidence is clear. Hundreds of thousands of people are reaching the end of their lives without basic palliative care, causing pain and distress that is totally avoidable - and the situation is getting worse. 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."
