Zamora, B., Cookson, G. and Garau, M.
In England, an estimated 378,427 people receive palliative care each year in a range of specialised and generalised services. Overall, the quality of palliative care in England and the wider UK is widely regarded as excellent. However, despite the generally high level of care, many patients receiving palliative care die in pain every year. Yet, to date, there is little evidence of the scale of this problem.
This study estimates that currently there are approximately 125,971 end-of-life patients receiving, or in need of, palliative care suffering from unrelieved pain. Of these, an estimated 16,130 patients experience no relief from their pain at all in the last three months of life. Some of these patients suffer unnecessarily because of variations in the quality of care across care settings (e.g. hospice versus at home services).
However, even if unrelieved pain rates were the same as they are in hospices, where they are at their lowest since palliative care is excellent in hospices, there would still be 50,709 palliative care patients dying in some level of pain each year. Of these patients, 5,298 would still experience no pain relief at all in the last three months of life.
Our estimates include patients of all ages, including children (under 19) which only account for 0.83% of the registered deaths in England and Wales. This was dictated by the availability of evidence of the number of deaths by place of death, which does not differentiate by age. If we were to include only adults, the number of patients who experience no relief from their pain at all in the last three months of life would go from 16,130 to 15,996.
Overall, this study has adopted conservative assumptions that will provide the lowest possible estimate of the number of patients dying with unrelieved pain.