Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis

Abstract

Background: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. Aims: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. Design: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. Data Sources: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. Findings: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. Conclusions: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

Dying in Prison: End-of-Life Care Services in a State Correctional Facility

“…Many resources are required to care for and secure terminally ill inmates, which can strain state and federally-operated prisons (Gorman, 2008;Schaefer et al, 2022). Most prisons forgo a compassionate release option and provide hospice or EOL services to terminally ill patients.…”

“…Courtwright and colleagues (2008) ascertain bureaucracy and prison policies contribute to barriers in providing effective palliative and EOL care, while Chandler (2003) suggests for-profit or the privatization of prisons and punishmentcentered philosophies contribute to lack of programming. Additional barriers include mistrust between staff and inmates, understaffing and safety concerns, and negative public attitudes toward compassionate end of life care for the prison population are the most common barriers to successful implementation (Maschi et al, 2014;Schaefer et al, 2022).…”

Caring for people in prison with palliative and end-of-life care needs

“…Peer carers can form an important link between the dying person and the staff responsible for their care. They may act as an advocate and assist in symptom recognition (an area that is perceived to be inadequate by some incarcerated people) 36▪▪ . In a study of 52 incarcerated persons and 21 peer carers, Prost and Lee 37 noted very high levels of symptom agreement (93.58%) between carers and their patients.…”

Models of palliative care for under-served populations in high-income countries: a scoping review protocol

“…As such, they often have complex palliative care needs. In addition, although research has considered access to palliative care among other under-served groups, including people who are homeless or incarcerated, 23,24 there is limited research on access to palliative care among people of CALD communities, low socioeconomic status, and residing in rural areas.…”