Inequality in end of life care
A significant rise in the number of people dying in prison, together with an increasingly sick and older prison population, has led to a corresponding rise in need for end of life care – a need that Hospice UK’s new report (published on 26 April 2021) – Dying Behind Bars – says is not being adequately met. Hospice UK says there is reliable evidence that end of life care in the UK is highly unequal, with those marginalised by society – including racialised communities, LGBTQ+ and incarcerated people – being left by the wayside. For those facing their last days in prison, society continues to fail them, with adequate palliative and end of life care needs remaining unmet.
End of life care in the prison service
Today, the prison system is the UK’s largest provider of residential care for frail, older men – with significantly more people dying behind bars as a consequence of the number of incarcerated people aged over 60 tripling in the past two decades.
In the 12 months to June 2020, there were 218 deaths in prison due to natural causes, which is an increase of 77% compared to a decade prior. (The figure for the year to March 2021 was even higher with 408 people dying in prisons, however, 143 of these deaths were caused by coronavirus.)
Hospice UK attributes this trend to the consequence of harsher, longer sentences, the rise in the number of convictions for sexual offences (including historical cases), and the absence of timely and transparent processes when it comes to compassionate release when a person in prison has a terminal illness and is approaching death.
Despite people in prisons being legally entitled to the same healthcare and treatment as those on the outside, older incarcerated people’s experiences are much worse in comparison to those of the same age in the general population.
Accounts from inside prisons include:
- People with dementia who didn’t know they were in prison being locked in cells alone;
- frail, elderly people cuffed to hospital beds;
- and terminally ill people dying in their cells while awaiting their application outcomes for compassionate release (with the pandemic halting the process for many).
These examples, sadly, are all too common.
While the health inequalities within the prison population are stark and present major challenges, Hospice UK says we should expect uniformly high standards in the services available across society – including within prisons.
The report is informed by in-depth analysis of the Prisons and Probation Ombudsman’s Fatal Incident reports, as well as close engagement with hospice services and other health and social care providers who support imprisoned people at the end of life. Among the challenges this report identified were the widespread inappropriate use of restraints, delayed or absent consideration of compassionate release, and care that did not make use of the skills and specialisms available from the health and social care sectors.
Findings from fatal incident reports
Hospice UK found that delving deeper into the FIRs made for grim reading. The FIRs describe people with dementia who don’t know that they are in prison, or how they got there. Frail, elderly people taken to hospital chained to prison officers and later, cuffed to hospital beds. Terminally ill imprisoned people dying in their cells before receiving the outcomes of their applications for compassionate release.
But amongst this, there are accounts of incredibly compassionate care. From managing symptoms in the face of medication restrictions to caring for older, frail imprisoned people within an estate unfit for purpose, the challenges to delivering end of life care can be significant. In spite of this, the FIRs detail a number of cases in which prison staff and health and social care professionals, including hospice staff, have gone above and beyond to provide exemplary care in less-than ideal circumstances.
The report concluded that while there is substantial hospice involvement within prison healthcare, it is by no means standardised at a national level. There is considerable potential to increase hospice involvement and ultimately, it can significantly improve the end of life care received by imprisoned people.
The report makes 9 recommendations:
- The Prisons and Probation Ombudsman should comprehensively review its application of “equivalent care” and ensure that it is aligned with standards of care in the wider health and care system.
- HM Prison and Probation Service and the prison system should review their policy and practice on the use of restraints, especially concerning seriously and terminally ill imprisoned people.
- The compassionate release process should be comprehensively reviewed and amended to ensure that it is used in a consistently fair and timely manner.
- The provision of bereavement support within prisons should be established at a national level and hospice services should explore the possibility of supporting or providing this care.
- The Prisons and Probation Ombudsman should conduct an in-depth review of natural, foreseeable deaths of those with protected characteristics in prison.
- It is vital that there is a better shared understanding of the support that is available from hospice services, and the unique needs that imprisoned people will have at the end of life. National organisations and local services should commit to dispelling myths and misconceptions.
- National organisations should support and facilitate the sharing of good practice across the palliative and end of life care system for those providing care for imprisoned people.
- Hospice services should assess the need for palliative and end of life care support for imprisoned people in their community and proactively engage and work closely with local specialist organisations supporting prison health and care services to ensure that need is met.
- End of life care for imprisoned people should be a UK-wide policy priority. The current provision of and unmet need for end of life care in prisons should be established across the four nations.
Thanks to Andy Aitchison for kind permission to use the header image in this post. You can see Andy’s work here.