Author: Professor Katherine E Sleeman, King’s College London, UK

The UK is moving closer to legalisation of assisted dying. One of the arguments made in favour of legalisation is the limit of palliative care to resolve all suffering. Many of the speeches made in support of the Leadbeater bill (which would legalise assisted dying across England and Wales) at its Second Reading in the House of Commons described people suffering unbearable physical symptoms towards the end of life. Similarly, campaigning groups highlight unrelieved pain among dying people to drive support.

Last year, a few days before the Second Reading of the bill, an analysis was published by the Office of Health Economics (OHE) that aimed to quantify how many people across the UK would die with unresolved pain, even if they had had access to high quality palliative (or hospice) care.(1) The analysis was an update of a 2019 report by the OHE that had been commissioned by Dignity in Dying, one of the most prominent organisations campaigning for law change.

VOICES survey and OHE analysis:

The 2024 analysis (which was published on the OHE website) used data from the 2015 VOICES survey, a post-bereavement survey across England and Wales, that asked respondents about aspects of care in the last months of life, including whether the person who died had used hospice care, and how much their pain was relieved in various settings (using a scale from “completely, all of the time” to “not at all”).

The 2015 VOICES study had found that for 1.4% of people, their pain had not been controlled (“not at all”) when in the hospice setting. The OHE authors applied this value to the population of people who died across the UK in 2023 (and who would have been expected to have palliative care needs) in an attempt to identify how many dying people would have had their pain controlled “not at all” even if they had had access to hospice care. They ended up with a figure of 7,329 people across the UK who would have died with uncontrolled pain, even if “the highest levels of hospice-level care” were available to them, or “20 people a day”. Not surprisingly, this soundbite was reported widely in the media and by campaigning groups, and has been frequently cited by Parliamentarians in support of law change.

Limitations of the analysis:

There are several limitations of the analysis that mean the headline figure is unlikely to be reliable. Most fundamentally, the analysis did not account for casemix; it assumed that people receiving hospice care are the same with respect to pain as those who do not receive this care. This is a problematic assumption, because severe pain is frequently a reason for being referred into inpatient hospice care. One would expect those receiving hospice care to have worse symptoms (including pain) than those who don’t. Applying a “1.4%” multiplier to the whole population would therefore result in an inflated headline finding.

Furthermore, we know that to be fully effective people need to receive specialist palliative care for 3-6 months before death (2), whereas those who do receive specialist palliative care in the UK generally only receive it for a few weeks (3). Therefore, even those people identified by VOICES as receiving hospice care are likely on average not to have received it for long enough to optimise their symptoms. Again, this would have the effect of inflating the headline figure of the total number of people with uncontrolled pain, even if “the highest levels of hospice-level care” were available to them.

Conclusion:

Most professionals accept that not all end-of-life suffering can be ‘solved’. Even with the best palliative care, there are likely to be people who will want to die before their bodies do. Experience from jurisdictions where assisted dying is legal indicates that this is more frequently due to existential than physical suffering, with ‘losing autonomy’ being the most frequent end-of-life concern in Oregon (cited by 92% of people who died after ingesting lethal medication in 2023, compared to 34% who cited ‘inadequate pain control or concern about it’).(4) People who have had control in life understandably often want to retain that control in dying. For some people this means choosing the time of their death.

There are strong arguments for legalisation of assisted dying, and strong arguments against it. Our path towards legislation in the UK (if that is where we are heading) should be guided by high quality, peer-reviewed evidence. Catchy soundbites based on simplistic analyses must not drive law change.

References:

(1) Office of Health Economics Nov 2024 https://www.ohe.org/insight/20-people-a-day-die-in-unrelieved-pain-across-the-uk-at-the-end-of-their-lives/

(2) Johnson M et al  August 2024 PLOS Medicine Benefits of specialist palliative care by identifying active ingredients of service composition, structure, and delivery model: A systematic review with meta-analysis and meta-regression.  https://doi.org/10.1371/journal.pmed.1004436

(3) Jordan RI et al, BMC Medicine 2020 Duration of palliative care before death in international routine practice: a systematic review and meta-analysis. BMC Med 18, 368 (2020). https://doi.org/10.1186/s12916-020-01829-x  https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-020-01829-x

(4) Oregon Death With Dignity Act 2023 Data Summary https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year26.pdf