An estimated 20 terminally ill people in the UK die in unrelieved pain each day, according to a study by the independent Office of Health Economics (OHE).
According to its research, to be presented to MPs on Tuesday, one in four people receiving palliative care in England have “unmet pain needs”. The OHE said it used “the most conservative of estimates [suggesting] the true number is likely to be much larger”.
It calculated that, even with the “highest possible standards of hospice-level palliative care”, more than 7,300 people across the UK died with unrelieved pain in the last three months of their lives in 2023. In 2019, the comparable figure was nearly 6,400 people a year – a 15% increase over four years.
It also said that fewer than 5% of terminally ill people in England who needed hospice care in 2023 received it.
The OHE’s findings will feed into an intensifying debate over the legalisation of assisted dying ahead of a historic vote by MPs on Friday. Supporters and opponents of Kim Leadbeater’s private member’s bill are making final efforts to persuade undecided MPs, with few willing to predict the result of the free vote.
The last few weeks have exposed divisions over the issue within the government, despite an appeal by Keir Starmer for ministers to remain neutral in the debate.
Two justice ministers are understood to be planning to vote in favour of assisted dying, after the justice secretary, Shabana Mahmood, said over the weekend that she was fiercely against the proposals.
Jess Phillips, the safeguarding minister, said that she was “a person who fundamentally believes in the right for people to make a choice about their bodies”. But she defended Mahmood’s intervention, saying it was up to each individual MP to make their own moral choice.
Heidi Alexander, the courts minister, is also understood to be in favour of the bill and was formerly the chair of the all-party parliamentary group on end-of-life care.
The OHE said that irrespective of the outcome of Friday’s vote, investment in high-quality end-of-life care should be a “crucial component of the conversation around assisted dying”.
Its research supports the argument advanced by advocates for assisted dying that even excellent and comprehensively available palliative care cannot guarantee a pain-free death and that all options should be available to terminally ill people.
Demand for palliative care in England increased by 15% between 2019 and 2023, from 378,427 to 436,022 patients. Between now and 2040, demand is expected to increase by a further 25%, the OHE said.
Prof Graham Cookson, the organisation’s chief executive, said: “Our research finds that even assuming the highest standards of care, there remains a group for whom no amount of pain relief will ease their suffering in the last few months of their life.
“However, the reality is that there is an increasingly widening gap in access to palliative care, and this number is only projected to grow, across settings, over the years. The true number of people dying in unrelieved pain in the UK is likely to be much higher than our conservative estimate.”
Mark Jarman-Howe, the chief executive of St Helena hospice in Colchester, Essex, said the palliative care sector needed to be more honest. Speaking in a personal capacity, he said: “I’m a great advocate for hospice and palliative care. It can be transformational for people, but it cannot possibly resolve all symptoms and all pain at the end of life.
“There are at least 20 people a day in the UK dying in pain, and that doesn’t include other unresolved symptoms such as uncontrollable nausea. Even if we have the best possible funding for hospice care, that would still be an issue that we need to address.”
Rebecca Gillanders, a barrister, said her mother’s “excellent” palliative care did not stop a capable, robust and positive woman from being “reduced to a desperate, tormented creature” who begged to die.
Gillanders’ mother was diagnosed a year ago with brain cancer and died two months later at the age of 69. “She was on the strongest possible medication, but it took 10 desperate, miserable, brutal days for her to die. Her death was emblematic of the experiences an awful lot of people have behind closed doors.”
