Caring to Learn and Learning to Care

Abstract

The increasing numbers of aging and chronically ill prisoners incarcerated in Western nations is well documented, as is the growing need for prison-based palliative and end-of-life care. Less often discussed is specifically how end-of-life care can and should be provided, by whom, and with what resources. One strategy incorporates prisoner volunteers into end-of-life services within a peer care program. This article reports on one such program based on focused ethnographic study including in-depth interviews with inmate hospice volunteers, nursing staff, and corrections officers working in the hospice program. We describe how inmate volunteers learn hospice care through formal education and training, supervised practice, guidance from more experienced inmates, and support from correctional staff. We discuss how emergent values of mentorship and stewardship are seen by volunteers and staff as integral to prison hospice sustainability and discuss implications of this volunteer-centric model for response-ability for the end-of-life care of prisoners.

Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014–2018

“…The review identified 23 articles, 16 reporting qualitative methods2 3 29–42(table 3), six reporting quantitative methods8 9 43–46(table 4) and one reporting mixed methods4(table 3). Methodological diversity was high across all groups.…”

“…Thirteen articles reported findings from six studies based in the USA,8 9 29–33 36 39–43 four articles reported findings from three studies based in the UK,4 35 38 45 three articles reported findings from two studies based in Switzerland,3 34 37 two articles reported findings from one study in France2 46 and one article reported findings from a study in India 44. The articles reported on a broad range of areas, including prison healthcare facilities,43 45 the health of dying prisoners and causes of death,8 9 44 46 elderly and dying prisoners views on issues related to palliative and end of life care in prisons3 4 34 36 40 and inmate volunteer caregivers 30–33 42. Of the 19 studies which sampled prisoners (or their case records),2–4 8 9 29–34 36–38 40–42 44 46 12 dealt exclusively with male prisoners,4 8 29 30 32 33 36–38 40–42 and seven with male and female prisoners 2 3 9 31 34 44 46…”

“…The articles reported on a broad range of areas, including prison healthcare facilities,43 45 the health of dying prisoners and causes of death,8 9 44 46 elderly and dying prisoners views on issues related to palliative and end of life care in prisons3 4 34 36 40 and inmate volunteer caregivers 30–33 42. Of the 19 studies which sampled prisoners (or their case records),2–4 8 9 29–34 36–38 40–42 44 46 12 dealt exclusively with male prisoners,4 8 29 30 32 33 36–38 40–42 and seven with male and female prisoners 2 3 9 31 34 44 46…”

“…Alongside these physical barriers, there are also ideological barriers to palliative and end of life care in prisons. Several studies highlighted the conflicting priorities of care and custody, and the way they could affect care2 29 30 35 37 39 45 (median SQS=68%; range 55% to 85%, n=7 studies). Locked doors at the end of life,2 45 and the use of handcuffs and restraints when offenders are attending community hospitals or hospices35 are examples of how care and custody can clash.…”

“…The most common facilitator of good palliative and end of life care in prison was allowing for the fostering of close relationships, particularly with families and other inmates (including inmate hospice volunteers)2 3 29–33 36 40 41 45 (median SQS=85%; range 57% to 98%, n=11 studies). Facilitating visits from families was seen as important2 3 40 45 (median SQS=73%; range 57% to 85%, n=4 studies), although some prisoners had limited, strained or no contact with their real families2 3 31 41 (median SQS=85%; range 63% to 90%, n=4 studies).…”