“I’m somebody that nobody thought I could be.”

Categories: Care, Community Engagement, Education, Featured, Leadership, Opinion, People & Places, and Research.

This article was originally published on The Palliative Approach on June 4, 2024.

By Barry R. Ashpole

The concept of what is commonly termed “prison hospice” is being adopted by a relatively small number of institutions in several countries. These initiatives are consistent with the philosophy and practice of hospice and palliative care (PC): improving the quality of end-of-life care (EoLC) for the incarcerated and recognizing the potential capacity of correctional facilities to help rebuild – not destroy – souls. As one prison hospice volunteer has remarked: “I’m somebody that nobody thought I could be.”

Where volunteer inmates have been trained to care for those living with a terminal illness, prison hospice (PH) has also served to work against the sense that the incarcerated are of little or of having no value. PH, therefore, can serve two critically important purposes consistent with the philosophy and practice of palliative and EoLC: improving the quality of care for the incarcerated, and the potential capacity of correctional facilities to help rebuild – not destroy – souls. As one inmate at Iowa State Penitentiary commented:

“And we always wondered who was gonna be the last one living to take care of the rest of ’em. Well, when they brought in a hospice, it gave us an avenue to take care of each other. In order to get in here, they’re pretty sick. They’re dyin’. So you’re dealin’ with them knowin’ that it doesn’t matter what you do. You’re not helpin’ them to live. All you’re doin’ is makin’ their passing easier. We hold their hands. We pray. And we bathe ’em. We feed ’em, make sure they eat. We take ’em to the yard. We take care of all the things that they need. And when that patient has a family, his family is allowed to come back in here to the hospice.

When I started hospice, I thought it would be about what I can give to the patient, what I could do for that patient to make ’em feel better. But when you do what you do, the feeling that you get back from them, you can’t even describe it.”

The quality of EoLC behind bars is emerging as a universal public health issue. Geriatric and EoLC in correctional facilities are not as equitable as care in the outside world. The training of inmates as hospice volunteers, however, is gaining increased traction. Currently, their training is typically “face-to-face, homegrown, and variable in content.” Some correctional facilities are also extending this training to prison staff.

The aging of prison populations, and with this a corresponding increase in chronic illness and disability, is a world-wide phenomenon. For a disturbing number of inmates, prison will be their “final resting place.”

The support provided by some community hospices to prisons extends beyond direct care, and some hospices are also involved in sharing their expertise in relation to specialist PC. Others are developing services to meet the demand of this population with the assistance of prisons and those involved in custodial care. For the many countries who have not adopted prison-based hospices, effective collaboration between prisons and community hospices on a national level will be required to meet the needs of the growing number of people in prison who require hospice and palliative care.

One recently published study has taken a close look at three models of care adopted by some correctional facilities:

  • Embedded Hospice
  • Outsourcing Care
  • Community Collaboration

The study concluded that Embedded Hospice model shows potential benefits for patients and prisons, Outsourcing Care may miss opportunities for comprehensive care, and Collaborative Care relies on proactive prison-community relationships that could be formalized for improvement.

Keeping abreast of the literature on the aging prison population, the quality of prison healthcare services and, in particular, the quality of EoLC in the prison environment is a challenge. ‘End-of-Life Care Behind Bars’ is a new resource intended to facilitate easy access to the latest research. As an advocacy, teaching and research “tool”, this new resource will inform and, hopefully, advance a seismic shift in society’s attitudes towards the incarcerated – and to effect change in advancing the concept of prison hospice.

References / Sources:

  1. ‘Prison Terminal: The Last Days of Private Jack Hall,’ HBO Documentary: https://bit.ly/2LTYv7M
  2. McParland, C., Johnston, B. ‘Caring, sharing, preparing and declaring: How do hospices support prisons to provide palliative and end-of-life care?’ Palliative Medicine, 2020;35(3):563-573: https://bit.ly/3a1Ejv9
  3. Gilbert, E., De Viggiani, N., Selman, LE 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,’ Palliative Medicine, 2024;38(5):517-534. https://bit.ly/3w5V9q2
  4. ‘End-of-Life Care Behind Bars’ website: https://bit.ly/4dU4qmi

Additional Readings / Sources By Canadian Researchers

  1. Shaw, J., Driftmier, P. ‘“Dying with a smile, just knowing that somebody’s listened to me”: End-of-life care and medical assistance in dying in Canadian prisons,’ OMEGA – Journal of Death and Dying, 2024;88(4): 1290-1313: https://bit.ly/4aMvlh7
  2. Fisher, M. ‘Prison inmates deserve access to high-quality palliative care,’ Canadian Nurse. Posted online 18 July 2022: https://bit.ly/3G4LUYU
  3. Iftene, A., Downie, J. ‘End-of-life care for federally incarcerated individuals in Canada,’ McGill Journal of Law & Health, 2020;14(1):1-50: https://bit.ly/3x9mbNJ
  4. Speight, S. ‘Canadian penitentiaries: Dangerous for aging and palliative prisoners,’ The Conversation. Posted online 3 March 2020: https://bit.ly/4c1mpFA
  5. Hudson, H., Perron, A., Wright, DK. ‘Palliative care and the injustice of mass incarceration: Critical reflections on a harm reduction response to end of life behind bars,’ Witness: The Canadian Journal of Critical Nursing Discourse, 2019;1(2):4-16: https://bit.ly/36ZKYB4
  6. Burles, M., Peternelj-Taylor, C. ‘When home is a prison: Exploring the complexities of palliative care for incarcerated persons,’ Hospice Palliative Home Care & Bereavement, July 2019. Book chapter: https://bit.ly/3Ra3n81
  7. Dieleman, C. ‘Aging & dying in prison: The principle of equivalence,’ September 2017. Powerpoint presentation: https://bit.ly/3X8ii6h

Barry R. Ashpole is a semi-retired communications consultant and educator, whose active involvement in hospice and palliative care circles on the international front dates from the early 1980s. He has been involved in a broad range of initiatives and focussed much of his work on palliative and end-of-life care (P&EoLC) for vulnerable populations, in particular for the incarcerated. For 15+ years he published Media Watch, a weekly annotated listing of the latest journal articles, news media reports, etc., on P&EoLC. He currently compiles a similar, monthly listing, which is posted on the website of the International Association for Hospice & Palliative Care: https://bit.ly/3WWxUYC.

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