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.
MaullF. Dying in prison: sociocultural and psychosocial dynamics. Hosp J1991; 7: 127–142.
2.
HammettTMHarmonMPRhodesW. The burden of infectious disease among inmates of and releasees from US correctional facilities, 1997. Am J Public Health2002; 92: 1789–1794.
3.
LinderJFEndersSRCraigE, et al. Hospice care for the incarcerated in the United States: an introduction. J Palliat Med2002; 5: 549–552.
4.
MaullFW. Issues in prison hospice: toward a model for the delivery of hospice care in a correctional setting. Hosp J1998; 13: 57–82.
5.
Australian Bureau of Statistics. Prisoners in Australia, 2020. Sydney, NSW: Australian Bureau of Statistics, 2020.
US Department of Justice. Aging of the state prison population, 1993-2013. Washington DC, US: US Department of Justice, 2016.
8.
ZingerILandryM. Aging and dying in prison: an investigation into the experiences of older individuals in federal custody. Ottawa, ON: Office of the Correctional Investigator, 2019.
9.
Her Majesty’s Inspectorate of Prisons. Justice committee inquiry into older prisoners. London, UK: Her Majesty’s Inspectorate of Prisons, 2014.
10.
Her Majesty’s Inspectorate of Prisons for Scotland. Who cares? The lived experience of older prisoners in Scotland’s prisons. Edinburgh: HMIPS, 2017.
11.
House of Commons Justice Committee. Ageing prison population: fifth report of session 2019-21. London, UK: House of Commons Justice Committee, 2020.
12.
WilliamsBAGoodwinJSBaillargeonJ, et al. Addressing the aging crisis in U.S. Criminal justice health care. J Am Geriatr Soc2012; 60: 1150–1156.
13.
BaidawiSTurnerSTrotterC, et al. Older prisoners: a challenge for Australian corrections. Trends Issues Crime Crim Justice2011; 426, 1.
14.
Australian Institute of Health and Welfare. Health and ageing of Australia’s prisoners 2018. Report no. PHE 269 Canberra, Australia: AIHW, 2019.
GrantA. Elderly inmates: issues for Australia. Canberra, Australia: Australian Institute of Criminology, 1999.
17.
HollandMMProstSGHoffmannHC, et al. U.S. Department of corrections compassionate release policies: a content analysis and call to action. Omega J Death Dying2020; 81: 607–626.
18.
KarchACravensM. Rapid diffusion and policy reform: the adoption and modification of three strikes laws. State Polit Policy Q2014; 14: 461–491.
19.
TurnerSTrotterC. Growing old in prison? A review of national and international research on ageing offenders. Corrections Research Paper Series, Paper No. 03July2010: Victorian Department of Justice, 2010.
20.
Australian Institute of Health and Welfare. The health of Australia’s prisoners 2018. Government. Report no. Cat. no. PHE 246 Canberra, Australia: ACT, 2019.
21.
RikardRVRosenbergE. Aging inmates: a convergence of trends in the American criminal justice system. J Correct Health Care2007; 13: 150–162.
22.
BryantCD. Handbook of death & dying. Thousand Oaks, CA: SAGE Publications, Inc, 2003.
23.
TurnerMPayneSBarbarachildZ. Care or custody? An evaluation of palliative care in prisons in north west England. J Palliat Med2011; 25: 370–377.
24.
ChassagneAGodardACretinE, et al. The collision of inmate and patient: end-of-life issues in French prisons. J Correct Health Care2017; 23: 66–75.
25.
PazartLGodard-MarceauAChassagneA, et al. Prevalence and characteristics of prisoners requiring end-of-life care: a prospective national survey. J Palliat Med2018; 32: 6–16.
26.
PanozzoSBryanTCollinsA, et al. Complexities and constraints in end-of-life care for hospitalized prisoner patients. J Pain Symptom Manag2020; 60: 984–991.e1.
27.
PenrodJLoebSJSmithCA. Administrators’ perspectives on changing practice in end-of-life care in a state prison system. Public Health Nurs2013; 31: 99–108.
28.
HandtkeVWangmoT. Ageing prisoners’ views on death and dying: contemplating end-of-life in prison. J Bioeth Inq2014; 11(3): 373–386.
29.
CloyesKGRosenkranzSJBerryPH, et al. Essential elements of an effective and sustainable prison hospice program. Am J Hosp Palliat Care2015; 33: 390–402.
30.
PapadopoulosILayM. Current and emerging practice of end-of-life care in British prisons: findings from an online survey of prison nurses. BMJ Support Palliat Care2016; 6: 101–104.
31.
AhaltCTrestmanRLRichJD, et al. Paying the price: the pressing need for quality, cost, and outcomes data to improve correctional health care for older prisoners. J Am Geriatr Soc2013; 61: 2013–2019.
32.
BaidawiS. Managing the health of an ageing prison population – a review of the challenges to be addressed by effective models of care: an Evidence Check rapid review brokered by the Sax Institute for the Justice Health and Forensic Mental Health Network. Report, The Sax Institute, Australia, 2015.
33.
BedardRMetzgerLWilliamsB. Ageing prisoners: an introduction to geriatric health-care challenges in correctional facilities. Int Rev Red Cross2016; 98: 917–939.
34.
BoyleBA. The Maryland division of correction hospice program. J Palliat Med2002; 5: 671–675. Article.
35.
Australian Healthcare Associates. Exploratory analysis of barriers to palliative care: issues report on people who are incarcerated. Report, Australian Government Department of Health, Australia, 2019.
GinnivanNAButlerTGWithallAN. The rising health, social and economic costs of Australia’s ageing prisoner population. Med J Aust2018; 209: 422–424.
38.
Inspector of Custodial Services. Old and inside: managing aged offenders in custody. Sydney, NSW: Inspector of Custodial Services, 2015.
39.
MitchellAWilliamsB. Compassionate release policy reform: physicians as advocates for human dignity. Am Med Assoc J Ethic2017; 19: 854–861.
40.
Ambitions for Palliative and End of life Care Partnership. Dying well in custody charter: a national framework for local action. London: Ambitions for Palliative and End of life Care Partnership, 2018.
41.
World Health Organisation. Strengthening of palliative care as a component of integrated treatment throughout the life course. Geneva, Australia: World Health Assembly, 2014.
QuillTEAbernethyAP. Generalist plus specialist palliative care—creating a more sustainable model. New Engl J Med2013; 368: 1173–1175.
44.
McParlandCJohnstonBM. Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018. BMJ Open2019; 9: e033905.
45.
ThomasJHardenA. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol2008; 8: 45.
46.
ThorneSJensenLKearneyMH, et al. Qualitative metasynthesis: reflections on methodological orientation and ideological agenda. Qual Health Res2004; 14: 1342–1365.
47.
SladekRTiemanJFazekasBS, et al. Development of a subject search filter to find information relevant to palliative care in the general medical literature. J Med Libr Assoc2006; 94(4): 394–401.
48.
SladekRMTiemanJ. Applying evidence in the real world: a case study in library and information practice. Health Inf Libr J2008; 25: 295–301.
49.
PageMJMcKenzieJEBossuytPM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ2021; 372: n71.
50.
Australian Commission on Safety Quality in Health Care. National consensus statement: essential elements for safe and high-quality end-of-life care. Sydney, NSW, Australia: ACSQHC, 2015.
51.
TranNTBaggioSDawsonA, et al. Words matter: a call for humanizing and respectful language to describe people who experience incarceration. BMC Int Health Hum Rights2018; 18(1): 6.
52.
PeacockMTurnerMVareyS. ‘We call it jail craft’: the erosion of the protective discourses drawn on by prison officers dealing with ageing and dying prisoners in the neoliberal, carceral system. Sociology2018; 52: 1152–1168.
53.
SandersSStenslandMJuracoK. Agency behind bars: advance care planning with aging and dying offenders. Death Stud2018; 42: 45–51.
54.
SandersSStenslandM. Preparing to die behind bars: the journey of male inmates with terminal health conditions. J Correct Health Care2018; 24: 232–242.
55.
TurnerMPeacockMPayneS, et al. Ageing and dying in the contemporary neoliberal prison system: exploring the ‘double burden’ for older prisoners. Soc Sci Med2018; 212: 161–167.
56.
HandtkeVBretschneiderWElgerB, et al. The collision of care and punishment: ageing prisoners’ view on compassionate release. Punishment Soc2017; 19: 5–22.
57.
TurnerMPeacockM. Palliative care in UK prisons: practical and emotional challenges for staff and fellow prisoners. J Correct Health Care2017; 23: 56–65.
58.
LoebSJPenrodJMcGhanG, et al. Who wants to die in here? Perspectives of prisoners with chronic conditions. J Hosp Palliat Nurs2014; 16: 173–181.
59.
DeatonDAdayRHWahidinA. The effect of health and penal harm on aging female prisoners’ views of dying in prison. Omega J Death Dying2010; 60: 51–70.
60.
AdayRH. Aging prisoners’ concerns toward dying in prison. Omega J Death Dying2006; 52: 199–216.
61.
EndersSRPaternitiDAMeyersFJ. An approach to develop effective health care decision making for women in prison. J Palliat Med2005; 8: 432–439.
62.
FeronJ-MTanLHPestiauxD, et al. High and variable use of primary care in prison. A qualitative study to understand help-seeking behaviour. Int J Prison Health2008; 4: 146–155.
63.
PluggeEDouglasNFitzpatrickR. Patients, prisoners, or people? Women prisoners’ experiences of primary care in prison: a qualitative study. Br J Gen Pract2008; 58: e1–e8.
64.
CondonLHekGHarrisF, et al. Users’ views of prison health services: a qualitative study. J Adv Nurs2007; 58: 216–226.
65.
HoffmanHCDickinsonGE. Characteristics of prison hospice programs in the United States. Am J Hosp Palliat Care2011; 28: 245–252.
66.
DepnerRMGrantPCByrwaDJ, et al. “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. J Palliat Med2018; 32: 969–979.
67.
WalshEButtCFreshwaterD, et al. Managing pain in prison: staff perspectives. Int J Prison Health2014; 10: 198–208.
68.
SextonL. Penal subjectivities: developing a theoretical framework for penal consciousness. Punishment Soc2015; 17(1): 114–136.
69.
GoffmanE. Asylums: essays on the social situation of mental patients and other inmates. 1st ed.Garden City, N.Y: Anchor Books, 1961.
70.
BrennanF. Palliative care as an international human right. J Pain Symptom Manag2007; 33: 494–499.
71.
KanbergsAAhaltCCenzerIS, et al. “No one wants to die alone”: incarcerated patients’ knowledge and attitudes about early medical release. J Pain Symptom Manag2019; 57: 809–815.
72.
MartiIHostettlerURichterM. End of life in high-security prisons in Switzerland: overlapping and blurring of “care” and “custody” as institutional logics. J Correct Health Care2017; 23: 32–42.
73.
BolanoMAhaltCRitchieC, et al. Detained and distressed: persistent distressing symptoms in a population of older jail inmates. J Am Geriatr Soc2016; 64: 2349–2355.
74.
LoebSJHollenbeakCSPenrodJ, et al. Care and companionship in an isolating environment: inmates attending to dying peers. J Forensic Nurs2013; 9: 35–44.
75.
CrawleyE. Institutional thoughtlessness in prisons and its impacts on the day-to-day prison lives of elderly men. J Contemp Crim Justice2005; 21: 350–363.
76.
YampolskayaSWinstonN. Hospice care in prison: general principles and outcomes. Am J Hosp Palliat Care2003; 20: 290–296.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
