“People don’t understand what goes on in here”: A consensual qualitative research analysis of inmate-caregiver perspectives on prison-based end-of-life care

Abstract

Findings suggest that inmate-caregivers believe they provide a unique and necessary adaptation to prison-based end-of-life care resulting in multilevel benefits. These additional perceived benefits go beyond a marginalized group gaining access to patient-centered end-of-life care and include potential inmate-caregiver rehabilitation, correctional medical staff feeling supported, and correctional facilities meeting end-of-life care mandates. Additional research is imperative to work toward greater standardization of and access to end-of-life care for the incarcerated.

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…”

“…Some were accepting of death as something inevitable and natural3 32 (median SQS=90%; range 85% to 95%, n=2 studies), others found prolonged and frequent exposure to death in prison to be demoralising36 40 42 (median SQS=88%; range 83% to 90%, n=3 studies). The perspective of prisoners’ family members was considered in only one study,2 although several studies cited the perceived importance of family relationships for prisoners at the end of life2 3 33 36 40 41 (median SQS=87%; range 63% to 98%, n=6 studies).…”

“…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).…”