Ending inequalities in end of life care: Supporting prisoners

Categories: Care, Community Engagement, and Featured.

Rini Jones, Policy & Advocacy Officer at Hospice UK, writes about providing adequate end of life care to the UK’s growing prison population.

“Within the prison system are remarkable people working tirelessly in impossible circumstances. I saw real compassion in action, tempered by an outdated, nebulous bureaucracy which was never designed to provide for prisoners at the end of life… With a prison population increasing in size and frailty along with prison sentences which are growing longer, society needs to very carefully consider how it provides for its most vulnerable members.”  Testimony from a palliative care doctor engaged in prisoners’ end of life care.

Our prison population is rapidly ageing. Within the past two decades, the number of prisoners over the age of 60 in the UK has risen by 130 per cent, making them by far the fastest growing prison demographic, a trend that is set to continue. In part due to the accelerated physiological ageing associated with incarceration, older prisoners are generally defined as those aged over 50. In England and Wales alone, over 50s account for one in six people in prison, a proportion that has tripled in this same time period.

This isn’t, however, due to a protracted “elderly crime wave,” but rather a combination of harsher, more punitive sentencing practices and an acute rise in historic sex offences convictions. It means prisoners are being incarcerated later in life and growing older behind bars. As this continues, it becomes increasingly likely that prison is also where they will face the end of life; a reality reflected in the figures. In the past year, there have been 158 deaths in prison categorised as due to natural causes across England and Wales, a 60 per cent increase compared to a decade prior.

As those providing and championing high quality end of life care for all, this is something we should all be addressing. After all, a prison sentence is the deprivation of an individual’s liberties, it is not a sentence for poorer health and social care services.

Results from a survey of Hospice UK’s English membership have shown us that 24 hospices are working with a total of 21 prisons across England. From providing on-demand advice to prison clinicians, to directly caring for patients on the prison estate and in hospice inpatient units, the breadth of work conducted is far-reaching and deserves to be loudly supported.

Preliminary Hospice UK research into the English context demonstrates the growing, unmet need for end of life care in prisons. From our analysis of the deaths in English prisons due to natural causes between October 2018 and October 2019, we know that 61 per cent were foreseeable. These cases all explicitly mentioned the prisoners had required end of life care, and they represent a considerable proportion of need.

In over a quarter of these cases, hospices were, to varying degrees, involved in the prisoners’ end of life care. Out of the 24 cases describing particularly good end of life care practice, 58 per cent were cases in which hospices were involved in delivering this care. This included assisting prison clinicians with advance care planning and admitting prisoners to the hospice for their final days. This indicates that whilst there is substantial existing hospice involvement in prisons, there is also potential to increase it, and ultimately, improve the end of life care that prisoners receive.

But when the care needs of prisoners at the end of life aren’t met, the results are troubling to say the least. Of the 60 cases of deaths due to natural causes in this time frame, Prisons & Probation Ombudsman investigators detail the inappropriate use of restraints in 15 cases. In nine, there was a significantly delayed or no consideration at all of the prisoners’ early release on compassionate grounds. Most worryingly, four prisoners received substandard care that was considered inequivalent to what they would have received in the community.

Interviews with hospice staff and prison clinicians have shown us the sometimes difficult reality end of life care providers can face in delivering this care. From managing symptoms in the face of medication restrictions to caring for end of life prisoners with dementia within an estate unfit for purpose, the challenges can be significant. They also highlighted the innovative ways in which end of life care providers can collaborate to solve really pressing problems, as exemplified by St Peters Hospice in Bristol.

At the request of a local health lead working for a prison healthcare provider, St Peter’s Hospice held a virtual training session for prison nurses from five prisons in the Bristol area with no experience of delivering end of life care. Prison staff were anxious at the prospect of having to deliver end of life care within the prison, in a climate exacerbated by Covid-19. Their anxieties included managing multiple patients at the end of life within the prison and handling Covid-19-related medication shortages. The sessions that the hospice delivered were invaluable, putting worries at ease. An attendee attested, “anxieties were so high prior to it, but after, they were much more comfortable around the prospect of end of life care.”

In committing to improving end of life care for those in prison, we must account for the intersections at which prisoners are marginalised on multiple counts. Specifically, we must recognise that prisoners from racialised communities, and most acutely, Black prisoners, face distinct challenges whilst in prison. Prisoners from racialised communities are significantly overrepresented in prison, making up 27 per cent of the general prison population. It is well-documented that their healthcare needs are less likely to be identified and they often have poorer relationships with prison staff and experience higher levels of discrimination across all aspects of prison life.

As a sector, this is not something we should be passively accepting as an inevitable reality.  We must proactively collaborate to improve this intolerable state of affairs. From facilitating knowledge-sharing and peer learning for those engaged in prisoners’ healthcare, to dispelling misconceptions around prisoners and tackling the stigma that surrounds them, there is considerable opportunity for work to be done. Hospices, hospitals, care homes, and other community care providers all have a role to play and expertise to contribute in improving the end of life care prisoners receive.

Hospice UK are currently engaged in further research and activity exploring end of life care in prisons. If you have any questions, further comments, or would like to contribute your own expertise, contact Rini Jones in the Policy team at Hospice UK at r.jones@hospiceuk.org

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