Unrelieved Pain in Palliative Care in England

Although the quality of palliative care in England and the wider UK is regarded as excellent, many patients receiving palliative care die in pain. This new study estimates that more than 5,000 patients would die in pain every year even under the ‘best practice’ palliative care such as that provided in hospices.

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 regarded as excellent. Despite the excellent provision of palliative care in the UK, it is recognised that not all needs are met, especially within community palliative care.

Yet, to date, there is little evidence on the level of unrelieved pain in end-of-life patients, nor any understanding of the extent of this unmet need, even if every patient received the very highest standards of care as currently delivered by hospices. Moreover, there is recognition that the application of current best practice protocols for palliative care, such as the WHO’s cancer pain ladder for adults or the NICE guidelines, cannot alleviate pain for all end-of-life patients.

In a new OHE Consulting Report, we assess the extent of this unmet need by estimating the number of palliative care patients who would have their pain relieved if ‘best practice’ was adopted, and some projections of how these numbers may change over time. The study focused on England due to the limited availability of data for the entire UK. However, extrapolations are also provided that estimate the number of end-of-life patients with unrelieved pain in Scotland, Wales, and Northern Ireland assuming similar levels of unrelieved pain as reported in England.

The estimates presented in this study assume the levels of unrelieved pain in the last three months of life reported by families and carers of patients dying in hospices in England in the National Survey of Bereaved People (VOICES), which was conducted in 2015 by the Office of National Statistics. We know from the VOICES data that reported levels of unrelieved pain are significantly lower in hospices than in other care settings, including hospitals.

Our estimate of 5,298 patients who would die without any pain relief at all represents an aspirational, best-case scenario where every patient receives the very highest standard of care as provided in hospices. At present, the level of unmet need is greater; an estimated 16,130 patients are dying in pain, that is, with pain not at all relieved. If we were to include only adults over 18, the number of patients who experience no relief from their pain would be 15,996.

If the current levels of unmet need in specialist palliative community care continue, it will result in growing numbers of patients whose pain is unrelieved at the end of life, with a projected increase of 21.7% in parallel to the increase in deaths.

Citation

Zamora, B., Cookson, G., Garau, M., 2019. Unrelieved Pain in Palliative Care in England. OHE Consulting Report. London: Office of Health Economics. Available at: https://www.ohe.org/publications/unrelieved-pain-palliative-care-england

Related research

Sampson, C.J., 2016. Identifying Objects of Value at the End of Life. In: J. Round, ed., Care at the End of Life: An Economic Perspective. Switzerland: Adis, pp.103–122. DOI.

Shah, K. K., Tsuchiya, A. and Wailoo, A. J., 2015. Valuing health at the end of life: A stated preference discrete choice experiment. Social Science & Medicine, 124, pp.48-56. DOI. RePEc.

Shah, K. K., Tsuchiya, A. and Wailoo, A. J., 2011. Valuing Health at the End of Life: An Exploratory Preference Elicitation Study. OHE Research Paper 11/06. London: Office of Health Economics. RePEc.