Palliative care for people in prison: past, present and future

Introduction

Whilst the field of palliative care as we understand it today emerged more than half a century ago, a specific focus on palliative care for people in prison is a much more recent development. More than 15 years ago, in 2008, I started working in this area; in this editorial, I want to reflect on how palliative care for people in prison has developed since then, in terms of practice, policy and research, and suggest what further developments are necessary to ensure that prisons are not overwhelmed with trying to care for increasing numbers of very ill and dying people in the coming years. I will illustrate my arguments with examples drawn mainly from the United Kingdom (UK), because it has the highest prison population in Western Europe (1) and is facing multiple challenges in managing growing numbers of dying people in custody; however, emerging evidence shows similar issues in other countries (2-6).

The past

When I first began working in this area, there were around 9.8 million people held in penal institutions across the world (7). Although there was widespread awareness of violent and unexpected deaths in custody (such as suicides), scant attention had been paid to the rising numbers of old and ill people who faced the possibility of dying in prison from natural causes. At that time, the evidence base in this area was embryonic; as part of the first study that I and colleagues undertook, we searched for published research on palliative care in prisons and found only eight empirical papers and three literature reviews published in the preceding 20 years (8). There was little understanding of the challenges faced by prison staff and services in trying to provide appropriate care for dying people. Even in the UK, where palliative care was well established, there was no national guidance or policy about palliative care in prison, and even specific prison instructions to staff (known as ‘Prison Service Orders’) on healthcare made no mention of palliative care. Although a few prisons were trying to find solutions to the challenges they faced, there was little shared learning between prisons.

In a mixed methods study across six prisons in the North West of England (8), we interviewed both prison healthcare staff and specialist palliative care staff from hospices about their experiences of providing care for those dying in prison. What immediately struck us was the stark contrast between the two environments where these staff worked, and that hospice staff had little understanding of prisons and vice versa. Perhaps unsurprisingly, prison staff demonstrated low confidence in some aspects of palliative care, as they lacked training and experience. Some key challenges that emerged from this research included the safe and timely delivery of medications at the end of life, and balancing the available options with patient choice in determining where the person should die. Staff also reported job satisfaction when things went well, and there was a clear commitment to collaborative working. Many of these aspects of delivering palliative care in prison have subsequently been reflected in my own and others’ more recent work.

The present

Since 2008, the world prison population has risen by more than a million people and now stands at 10.99 million (1). There are multiple reasons for this, including population growth, ageing populations, and more punitive sentencing policies, meaning that people now spend longer in prison for crimes that in the past attracted shorter sentences. Across England and Wales for example, more than 2.5 times as many people were given sentences of 10 or more years in 2022 than in 2010, and the average sentence for serious indictable offences has risen by almost 40% from 38.7 months in 2010 to 62.4 months now (9). There are now almost four times the number of people aged 60 years and over in prison than there were 20 years ago (9), many of whom have multiple, chronic health problems and require healthcare, social support, and specialist equipment.

In many countries the numbers of deaths from natural causes in prison populations are also on the rise. In 2008, there were 98 deaths from natural causes in prisons in England and Wales (10); by March 2025, the annual figure had more than doubled to 227 (11). The inevitable consequence of increasing numbers of dying people is a greater need for palliative care in prisons. However, a recent report (12) concluded that almost a quarter of dying patients did not have an end-of-life care plan, and that end-of-life care “could have been improved in 45.2% of patients where the death was from natural causes” (p.14).

Despite these shortcomings however, there is far more interest in this area now than there was 15 years ago, and the evidence base has developed substantially. National studies have been undertaken in some countries [e.g., France (5)], models of care have been developed (13), and some international work has begun. In 2017, I was invited by the European Association for Palliative Care (EAPC) to lead an international task force focused on palliative care for people in prison, with the aim of undertaking some mapping work and sharing learning from different countries. We completed a survey in eight countries to identify prison systems and processes, discover whether and how palliative care was being provided, and find examples of good practice (14); we then undertook a qualitative study in six countries to explore the views and experiences of key stakeholders about the barriers and facilitators in providing palliative care in prison (15). Whilst the first study found very different prison systems and processes in the different countries, the second showed that, to a large extent, the same issues and challenges in providing palliative care are faced by people working in prisons in different parts of the world. There is therefore a great deal of scope for learning from the experiences of other countries and implementing strategies that have been shown to work.

Compared with 15 years ago, there is now much more recognition of the issue of the equivalence of care. In 2015, the United Nations (UN) adopted the ‘Nelson Mandela Rules’ (16), a set of rules about the treatment of people in prison. Rule 24 states that: “Prisoners should enjoy the same standards of health care that are available in the community, and should have access to necessary health care services free of charge without discrimination on the grounds of their legal status” (p.8). These rules have been widely adopted across all 193 UN Member States. In England and Wales, the Prisons and Probation Ombudsman (PPO), who conducts an independent investigation into every death in custody, makes an assessment in every natural cause death report about whether the care was equivalent to that which the person could have expected to receive in the community, and prisons are criticised if this falls short. Whilst assessments of equivalence only include the provision of healthcare, rather than other aspects of imprisonment that impact on both quality of life and dignity at the end of life, it is nevertheless important that these assessments are made.

Despite these positive steps, there remain significant challenges in providing palliative care in prison settings. Although there are pockets of good practice in some prisons in a few countries, there is little sign of national strategic thinking; in the UK for example, despite numerous calls from multiple organisations, and government acceptance of the need, there is still no national strategy for older people in prison (9), let alone those requiring palliative care, although the ‘Dying Well in Custody Charter’ (17), first published in 2018 and updated in 2024, is a positive step towards policy in this area. There is still too much reliance on motivated members of staff working in individual prisons, which means that some excellent initiatives are not sustained when key people change jobs or retire. Whether people receive good palliative care and are treated humanely at the end of life remains a lottery, and depends on what is currently available in their specific prison.

Another area of concern is the use of restraints on dying individuals. When someone is escorted out of prison to visit a hospital or hospice, a risk assessment is carried out by prison staff to determine the level of restraint required to ensure the person does not escape and to keep the public safe. Risk assessments are meant to take into account the person’s medical condition, age, and mobility (18). Too frequently however, risk assessments are based on the offence committed (often many years previously), rather than on the actual risk a frail, ill and dying person presents at the time. Researchers in Australia have recently highlighted multiple cases where restraints were inappropriately used on incarcerated individuals dying in hospital (19), and in the UK the use of restraints is frequently criticised by the PPO in their independent investigations of natural cause deaths. A recent study by Roulston et al. (20) reviewed PPO reports of natural cause deaths across the whole of the UK from 2017–2020 and found that restraints were used in 35.1% of cases where dying people were escorted out of prison for healthcare reasons; of these, the PPO criticised their use in 69% of cases, highlighting that the inappropriate use of restraints remains a prevalent issue.

The future

A more humane approach to the use of restraints at the end of life is just one of the changes required as we move into the future. There is little doubt that the trajectory for prison populations around the world is going up and will continue to do so in the foreseeable future. If courts across the globe are going to continue to incarcerate old, sick and dying people, the need for palliative care in prisons will continue to increase. Palliative care therefore needs to be more firmly embedded within prison systems, and prison administrations need to develop strategies and policies for delivering palliative care in at least some of their prison establishments. This will require a substantial investment in staff, infrastructure, equipment, and other resources.

However, there are alternative choices available to prison administrations around the world. The first of these is early release on compassionate grounds (ERCG), whereby people who are approaching the end of life are released from prison custody and moved to a location where they can receive the care they need. Whilst of course there are some people who can never be released because of the risk they pose to society, for many the risk is greatly diminished because of their age, frailty, immobility, or illness. It is difficult to obtain accurate data on the number of people who apply for ERCG, and how many of these applications are successful, but there is little doubt that the numbers are very small in many countries. Some argue (21) that the rare use of compassionate release negatively impacts patients’ access to end-of-life care. In the UK, in the five years from 2015 to 2019, only 53 people were granted compassionate release on the grounds of ill health (22). This is perhaps not surprising, given that the application process is complex and lengthy, and multiple criteria must be met before it can be considered; applications are often made very late and the person dies in prison before a decision is made. There would appear to be scope for making ERCG more accessible, speedier, and simpler, so that those who are in the last few weeks or days of life and who pose little or no risk could be moved to a more appropriate care setting.

It should be noted that some countries take a different approach. In Spain for example, incarcerated people are eligible to apply for parole when they reach the age of 70 years (23), and thus there are far fewer older people in prison. In France, very few people die in prison; those with significant healthcare needs are transferred to secure hospitals, so although they are not freed, they are able to access appropriate care from suitably qualified staff. Another approach, which is well established in some prisons in the United States, is prison hospice, one example of which is the Humane Prisons Hospice Project (24) in California. This project, which began in 2017 in San Quentin prison, provides a “humanitarian, cost-effective, and restorative justice solution” by training incarcerated individuals as peer caregivers and grief companions. Now established in five Californian prisons, these peer caregivers work within multidisciplinary teams to provide compassionate care to those who are old and dying in prison. As the project’s website states: “Training peer caregivers not only meets a critical healthcare need but also creates opportunities for purpose and humanity in the most challenging environments.” This initiative has been shown not only to be of benefit to those who are dying, but also to have a life-changing positive impact on those providing the care, and is a model that could be replicated in other countries.

There remain significant difficulties in obtaining funding for research in this area. The relatively small numbers of people affected mean that it is often considered a niche area, even though prison settings create disproportionately complex challenges for those trying to provide appropriate care. Research funders can also be deterred because of the political sensitivities around palliative care for people in prison; there are still those who believe that punishment should be the primary purpose of prison, and argue that justice for victims is more important than the needs of dying people who have committed offences. This is a complex ethical debate that needs to be had. However, new ideas (such as secure care homes) need to be tried and properly evaluated; although we now have a body of evidence detailing challenges and possible solutions, we need larger scale intervention studies to determine which approaches work. We also need more research on the perspectives of those who are dying in prison, and their families and friends.

There is a strong economic argument that it does not make financial sense to keep old and ill people in prison until they die (23). Rather than continuing to incarcerate increasing numbers of people for ever longer sentences, perhaps it is time for a rethink. We need public debate about what to do with older, frail, ill people who have committed serious offences but whose health and social care needs place enormous strain on custodial services. The very first study I undertook in prisons in 2008 explored the tensions between care and custody. Those tensions still exist; the challenge for the future is to find a sustainable balance between justice and humanity.

Acknowledgments

None.

Footnote

Provenance and Peer Review: This article was commissioned by by the Guest Editors (Eva Oldenburger and Johan Menten) for the series “Multidisciplinary and Holistic Palliative Care” published in Annals of Palliative Medicine. The article has undergone external peer review.

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-25-106/prf

Funding: None.

Conflicts of Interest: The author has completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-25-106/coif). The series “Multidisciplinary and Holistic Palliative Care” was commissioned by the editorial office without any funding or sponsorship. The author has no other conflicts of interest to declare.

Ethical Statement: The author is accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

References

1. Fair H, Walmsley, R. World Prison Population List (14th ed). Institute for Crime and Justice Policy Research 2024. Available online: https://www.prisonstudies.org/sites/default/files/resources/downloads/world_prison_population_list_14th_edition.pdf. Accessed 2 July 2025.
2. McParland C, Johnston BM. Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018. BMJ Open 2019;9:e033905. [Crossref] [PubMed]
3. Schaefer I, Panozzo S, DiGiacomo M, et al. Perceptions and experiences of clinicians and correctional officers facilitating palliative care for people in prison: A systematic review and meta-synthesis. Palliat Med 2024;38:951-67. [Crossref] [PubMed]
4. Barasker SK, Singhai P, Nair M, et al. Challenges and Ethical Considerations of Palliative Care in Indian Prisons. J Pain Symptom Manage 2025;70:e185-7. [Crossref] [PubMed]
5. Pazart L, Godard-Marceau A, Chassagne A, et al. Prevalence and characteristics of prisoners requiring end-of-life care: A prospective national survey. Palliat Med 2018;32:6-16. [Crossref] [PubMed]
6. Maschi T, Marmo S, Han J. Palliative and end-of-life care in prisons: a content analysis of the literature. Int J Prison Health 2014;10:172-97. [Crossref] [PubMed]
7. Walmsley R. World Prison Population List (8th ed.). International Centre for Prison Studies, King’s College London 2008. Available online: https://www.prisonpolicy.org/scans/wppl-8th_41.pdf. Accessed 2 July 2025.
8. Turner M, Payne S, Barbarachild Z. Care or custody? An evaluation of palliative care in prisons in North West England. Palliat Med 2011;25:370-7. [Crossref] [PubMed]
9. Prison Reform Trust. Bromley Briefings Prison Factfile, February 2024. Prison Reform Trust, London 2024. Available online: https://prisonreformtrust.org.uk/wp-content/uploads/2024/02/Winter-2024-factfile.pdf. Accessed 2 September 2025.
10. Prison Reform Trust. Bromley Briefings Prison Factfile, December 2010. Prison Reform Trust, London 2010. Available online: https://prisonreformtrust.org.uk/publication/factfile-december-2010/. Accessed 2 September 2025.
11. Ministry of Justice. Safety in Custody Statistics, England and Wales: Deaths in Prison Custody to March 2025 Assaults and Self-harm to December 2024. Ministry of Justice, London 2025. Available online: https://www.gov.uk/government/statistics/safety-in-custody-quarterly-update-to-december-2024/safety-in-custody-statistics-england-and-wales-deaths-in-prison-custody-to-march-2025-assaults-and-self-harm-to-december-2024#:~:text=Over%20the%20same%20period%2C%20there%20were%20227,(a%20rate%20of%202.0%20per%201%2C000%20prisoners). Accessed 2 September 2025.
12. National Confidential Enquiry into Patient Outcome and Death (NCEPOD). Inside Healthcare: A review of healthcare provided to people who died from a ‘natural’ or other ‘non-natural’ cause of death while detained in prison or were transferred to an acute NHS hospital or hospice while detained. NCEPOD 2024. Available online: https://www.ncepod.org.uk/2024prisonhealthcare/Inside%20Healthcare_summary%20report.pdf. Accessed 14 May 2025.
13. Gilbert E, Viggiani N, de Sousa Martins J, et al. How do people in prison access palliative care? A scoping review of models of palliative care delivery for people in prison in high-income countries. Palliat Med 2024;38:517-34. [Crossref] [PubMed]
14. Turner M, Chassagne A, Capelas ML, et al. Mapping palliative care provision for people in Europe and Australia: Findings from a survey undertaken by an EAPC Task Force. BMJ Support Palliat Care 2021. Available online: http://spcare.bmj.com/cgi/content/full/bmjspcare-2020-002701?ijkey=YI4jvFSiafvC2Bb&keytype=ref. Published online 23 April 2021.
15. Turner M, Brady B, Capelas ML, et al. Barriers and Facilitators in Providing Palliative and End-of-Life Care in Prison Settings: A Qualitative Study of Professional Stakeholders' Views and Experiences in Six Western Countries. J Correct Health Care 2025;31:373-82. [Crossref] [PubMed]
16. United Nations Office of Drugs and Crime (UNODC). The United Nations Standard Minimum Rules for the Treatment of Prisoners (the Nelson Mandela Rules). UNODC 2015. Available online: https://www.unodc.org/documents/justice-and-prison-reform/Nelson_Mandela_Rules-E-ebook.pdf. Accessed 2 July 2025.
17. NHS England. Dying Well in Custody Charter. NHS England, London 2024. Available online: https://www.england.nhs.uk/long-read/dying-well-in-custody-charter/#dying-well-in-custody-charter. Accessed 3 November 2025.
18. Price J. Growing Old and Dying Inside: Improving the Experiences of Older People Service Long Prison Sentences. Prison Reform Trust; London 2024. Available online: https://prisonreformtrust.org.uk/wp-content/uploads/2024/08/Growing-old-and-dying-inside.pdf. Accessed 6 September 2025.
19. Pemberton L, Panozzo S, Philip J. Call to end shackling of hospitalised palliative prisoner patients. Med J Aust 2024;220:304-6. [Crossref] [PubMed]
20. Roulston A, Turner M, Carduff E. A review of deaths in prison custody across the UK (2017-2020): What are the lessons for the future delivery of palliative and end-of-life care to people in prison? Pall Med 2025;39:
21. Handtke V, Bretschneider W, Elger B, et al. The collision of care and punishment: Ageing prisoners’ view on compassionate release. Punishment and Society 2016;19:5-22. [Crossref]
22. UK Parliament. Written Questions, Answers and Statements: Prisoners’ Release: Health. UK Parliament 2020. Available online: https://questions-statements.parliament.uk/written-questions/detail/2020-11-11/HL10210/. Accessed 6 September 2025.
23. Prais V. Elderly life-sentenced prisoners: a forgotten and ‘invisible’ group. Penal Reform International, UK and Netherlands, 2019. Available online: https://www.penalreform.org/blog/elderly-life-sentenced-prisoners-a-forgotten-and-invisible/#:~:text=Moreover%2C%20older%20life%20sentenced%20prisoners,both%20cases%2070%20years%20old. Accessed 6 September 2925.
24. Humane Prison Hospice Project. (2025). Available online: https://humaneprisonhospiceproject.org/. Accessed 6 September 2025.