Volume 24, Number 6: June 2023
Image by Holger Schué from Pixabay; used with permission.

Caring for Each Other: End-of-life behind bars

By Barry R. Ashpole
IAHPC Board Member & communication consultant

Worldwide, prison populations are ageing rapidly, with the life expectancy of elderly inmates considerably shorter than those in the "outside world.” And, with age, there is a corresponding increase in chronic illness and disability. For a disturbing number of inmates, prison will be their "final resting place.” 

The quality of end-of-life care behind bars is emerging as a universal public health issue, one that is receiving increased attention in the literature as well as in the news media, with reports of a number of initiatives, notably in the United States, in what is commonly termed “prison hospice.”1

Where volunteer inmates have been trained to care for those living with a terminally illness, prison hospice has also served to work against the sense that prisoners often have of having little or no value. Prison hospice, therefore, can serve two critically important purposes consistent with the philosophy of hospice and palliative care: improving the quality of care for the incarcerated, and the potential capacity of correctional facilities to help rebuild—not destroy—souls.

An Encouraging Trend

An encouraging trend in recent years is toward medical decision-making and advance care planning (ACP) in the prison population.4 Further research is needed, however, to better understand the attitudes, perspectives and experience with ACP for prisoners, prison-based health practitioners, correctional officers, and health practitioners providing care to prisoners. 5

Variable, "homegrown" care

Geriatric and end-of-life care in correctional facilities is not as equitable as care in the free world. The training of inmates as hospice volunteers, however, is gaining increased attention. Currently, their training is typically “face-to-face, homegrown, and variable in content and duration.”2 Some correctional facilities are extending this training to prison staff.3   

Research gaps, social challenges

To date, there has been little research on how inmates experience dying behind bars. (Though one study from the University of Iowa provides insight into how inmates view the dying process.6) Add to this the need for greater understanding of bereavement in the prison population and how a universal life experience can be particularly debilitating for the incarcerated.7 All this underscores the critical importance of psychosocial care for inmates with a life-limiting illness, which will require both a seismic shift in the prevailing public discourse and a stronger human rights focus.8 Early release on compassionate grounds, which is extremely rare in most countries, is a related issue. 

Faster rate of aging

The number of older people in prisons is known to be rising in many countries. For example, it is as high as 20% in Japan. And it is often growing at a faster rate than that of the general prison population. This poses specific challenges for health and age-related policy and practice in prisons, as older people in prison are more likely to have disabilities, multiple, chronic health conditions, or age-related cognitive impairment, such as dementia. An issue gaining traction is assisted suicide.9 Palliative care in prisons can be challenging not least because of the restrictions of the environment.10

Australia | Deeble Institute for Health Policy Research (Australian Healthcare & Hospitals Association): Ensuring the Quality of Palliative Care in Australia's Prisons. 

Australia | University of Technology Sydney: Palliative Care in Prisons Project. 

Australia | University of Melbourne: Caring for the Terminally Ill in Prison. 

Canada | Office of the Correctional Investigator: Aging and Dying in Prison: An Investigation into the Experiences of Older Individuals in Federal Custody.

Europe | EAPC Task Force on End-of-Life Care in Prisons. 

Europe (Belgium) | End-of-Life Care Research Group (University of Ghen): Palliative and End-of-Life Care Provision in Prisons in Europe and Australia. 

Europe (Switzerland) | Prison Research Group (University of Bern): End of Life in Prison. 

Europe (United Kingdom) | International Observatory on End of Life Care (Lancaster University): Dying behind Bars: An evaluation of end of life care in prisons in Cumbria and Lancashire.

United States | Humane Prison Hospice Project.

United States | Prison Fellowship: Hospice: The prison's forgotten corner.

United States | Prison Terminal: The Last Days of Private Jack Hall.

Read Barry Ashpole's bio.

IAHPC Policy Recommendations for Palliative Care in Prisons
is being presented at the EAPC World Congress in Rotterdam by IAHPC Senior Director of Advocacy & Partnerships Katherine Pettus on Thursday, June 15 at 4:30 p.m.

References
  1. Ashpole BR. End-of-Life Care in the Prison Environment offers a representative sample of articles, reports, etc., published over the past five years (2018-2022). 
  2. Loeb SJ, Murphy JL, Kitt-Lewis E, Wiom RK, Jerrod T, Myers VH. Inmates Care: Computer-based training for geriatric and end-of-life care in prisons. J Correctional Health Care 2021; 27(2): 132-144. 
  3. Harwell Myers V, Loeb S, Kitt-Lewis L, Jerrod T. Large-Scale Evaluation of a Computer-Based Learning Program to Increase Prison Staff Knowledge on Geriatric and End-of-Life Care. Int J Prison Health 2022; 18(2): 185-199. 
  4. US National Commission on Correctional Health Care Position Statement. Medical Orders for Life-Sustaining Treatment in Correctional Settings. J Correctional Health Care 2022; 28(4): 283-284. 
  5. Macleod A, Nai D, Ilbahar E, Sellars M, Nolte L. Identifying Barriers and Facilitators to Implementing Care Planning in Prisons: A rapid literature review. Health & Justice. Online September 21, 2020. 
  6. Sanders S, Stensland M. Preparing to Die behind Bars: The journey of male inmates with terminal health conditions. J Correctional Health Care 2018; 24(3): 232-242.  
  7. Wilson M, Johnston H, Walker L. “It’s Like an Animal in Pain”: Institutional thoughtlessness and experiences of bereavement in prison. Criminology Criminal Justice 2022; 22(1): 150-170.  
  8. Johns L, Weightman S, Blackburn P, McAuliffe D. A Systematic Literature Review exploring the psychosocial aspects of palliative care provision for Incarcerated Persons: A human rights perspective. Int J Prisoner Health 2022; 18(4): 443-457.  
  9. Downie J, Iftene A, Steeves M. Assisted Dying for Prison Populations: Lessons from and for abroad. Med Law Int 2019; 19(2-3): 207-225. 
  10. Saunders L. End-of-Life Care in Prisons. Penal Reform International. Online February 21, 2022. 

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