Who Wants to Die in Here?

Loeb, Susan J.; Penrod, Janice; McGhan, Gwen; Kitt‐Lewis, Erin; Hollenbeak, Christopher S.

doi:10.1097/njh.0000000000000044

Cited by 35 publications

(37 citation statements)

References 28 publications

(38 reference statements)

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“…The views of prisoners were included in other phases of the larger project (Loeb et al, 2013; Loeb et al, 2014), when we interviewed inmates in three segmented groups: (a) current consumers of EOL care (e.g., inmates housed in the infirmary), (b) future consumers of EOL care (e.g., those with advanced life-limiting illnesses), and (c) providers of EOL care (e.g., hospice workers). They informed our understanding of the need for services and attitudes regarding delivery and augmented experiential reports from the staff members in the collaborative team.…”

Section: Project Overviewmentioning

confidence: 99%

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Empowering Change Agents in Hierarchical Organizations: Participatory Action Research in Prisons

et al. 2016

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Participatory action research (PAR) approaches harness collaborative partnerships to stimulate change in defined communities. The purpose of this article is to illustrate key methodological strategies used in the application of PAR methods in the particularly challenging environment of a hierarchical organization. A study designed to promote sustainable, insider-generated system-level changes in the provision of end-of-life (EOL) care in the restrictive setting of six state prisons is used as an exemplar of the application of three cardinal principles of PAR. First, development of a collaborative network with active partnership between outsider academic researchers and insider co-researchers began with careful attention to understanding the culture and processes of prisons and gaining the support of organizational leadership, using qualitative data gathering and trust-building. During the implementation phase, promoting co-ownership of change in EOL care through the co-construction of knowledge and systems to enhance sustainable change required carefully-orchestrated strategies to maximize the collaborative spirit of the project. Co-researchers were empowered to examine their worlds and capture opportunities for change using new leadership skills role-modeled by the research team. Third, their local knowledge of the barriers inherent in the contextual reality of prisons was translated into achievable system change by production of a toolkit of formalized and well-rehearsed change strategies that collaborative teams were empowered to enact within their hierarchical prison environment.

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Section: Project Overviewmentioning

confidence: 99%

“…Although SCI staff members perceived organizational support from the state DOC for quality care of dying inmates, several areas of improvement were recommended. (Further description of specific segments of the Phase I study can be found in Loeb, Penrod, Hollenbeak, & Smith, 2014; and Penrod et al, 2014. )…”

Section: Project Overviewmentioning

confidence: 99%

Empowering Change Agents in Hierarchical Organizations: Participatory Action Research in Prisons

et al. 2016

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“…Given the vulnerability of this prisoner group, further research with the following foci may be considered an ethical imperative: Identifying older prisoners’ social care needs – important to establish for the development of policy and in commissioning services. This is also consistent with recent government guidance in one country (Munday, Leaman, & O’Moore, 2017) End-of-life care and hospices - although compassionate or early release may appear to be the most obvious route for prisoners reaching the end of their lives or with significant health and social care needs such as dementia, in many high income countries it is used sparingly for fear of public censure (Justice Committee, 2013; Loeb, Penrod, McGhan, Kitt-Lewis, & Hollenbeak, 2014). Therefore, evaluations of various end of life options could be useful, potentially building upon the USA-based hospice work, but including cell-based and community transfer options as well. Personal care – this could include the development and evaluation of a model of practice to reflect the main way that the social care needs of prisoners are likely to be assessed and attended (Tucker et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

“…End-of-life care and hospices - although compassionate or early release may appear to be the most obvious route for prisoners reaching the end of their lives or with significant health and social care needs such as dementia, in many high income countries it is used sparingly for fear of public censure (Justice Committee, 2013; Loeb, Penrod, McGhan, Kitt-Lewis, & Hollenbeak, 2014). Therefore, evaluations of various end of life options could be useful, potentially building upon the USA-based hospice work, but including cell-based and community transfer options as well.…”

Section: Discussionmentioning

confidence: 99%

A systematic integrative review of programmes addressing the social care needs of older prisoners

et al. 2019

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Background The number of older prisoners has risen exponentially over the last two decades, especially in high-income countries. Due to the increased and somewhat inadequately met health and social care needs of this group of prisoners, coupled with their vulnerability arising from higher levels of isolation, poverty and exploitation, financial costs have spiralled and human rights concerns have grown. This review aimed to present an overview of programmes that addressed older prisoners’ social care needs, a particularly underdeveloped area, with a view to assessing the extent to which they could inform policy and practice. Methods Following Whittemore and Knafl’s (J Adv Nurs 52:546-553, 2005) integrative review approach, a comprehensive search - including 16 electronic databases and hand searching - was undertaken up to May 2017 using search terms related to context, function and disability. The quality of included papers was assessed, data were extracted using a review-specific form based on the PICO formula, and research questions addressed using a narrative synthesis approach. Additionally, reporting followed PRISMA guidelines. Results A total of 29 papers were selected for inclusion, the majority of which focused on hospice programmes, with the remainder describing personal care-focused services, structured day programmes, and adaptations to prison operations (regime) and accommodation in support of prisoners’ social care needs. Whilst the programmes were reported to have some positive impacts on prisoners and the prison overall, and programmes were perceived to be cost-effective or cost-neutral, outcomes regarding staff were more mixed. Findings were tempered by the methodological shortcomings of the included papers, with many assessed as low quality, with a lack of prisoner participation, and an absence of experimental studies. Conclusions The evidence base for programmes addressing older prisoners’ social care needs appears to be at an embryonic stage. Further robust studies evaluating the effectiveness and cost-effectiveness of programmes addressing older prisoners’ social care needs are imperative in better informing policy and practice in support of this highly vulnerable group. Electronic supplementary material The online version of this article (10.1186/s40352-019-0090-0) contains supplementary material, which is available to authorized users.

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“…3 However, such service models are limited to a small number of prisons in the United States, United Kingdom and Europe. [9][10][11][12] There is currently no national model of prisonbased palliative and end of life care for those with life limiting illness in Australia. 13,14 Driven by principles of security and control, the constraining and complex nature of prison culture is not, for the most part, conducive to the provision of high-quality palliative and end-of-life care for those with life limiting illness.…”

Section: Introductionmentioning

confidence: 99%

A thematic analysis of hospital medical records of patients with advanced illness experiencing incarceration in the last 3 months of life

et al. 2022

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Background: The constraining prison culture is not, for the most part, conducive to the provision of palliative care for people in prison. Aim: This study aimed to explore patterns of palliative and end-of-life care provision for hospitalised prison patients. Design: A retrospective qualitative review of hospital medical records to explore the quality of end-of-life care provision for patients experiencing incarceration who died within hospital. Qualitative inductive analysis of record extracts of each patients final 3-months of life was undertaken. Setting/participants: An Australian metropolitan hospital responsible for providing secondary and tertiary health services for people experiencing incarceration. This study included a systematic sample of male patients experiencing incarceration who died in hospital between 2009 and 2019. Results: Medical record extracts of 15 male patients revealed two broad themes: (1) barriers to equitable access to palliative care for incarcerated hospitalised patients; and (2) factors that facilitated quality end-of-life care for patients and families. Barriers included: tensions between balancing risk and humanity; and limited agency over place and death. Conversely, early recognition of deterioration and anticipated dying provided patients and families opportunity to focus on end-of-life goals. Conclusions: Institutional influences of security and control challenged the provision of equitable end-of-life care for people experiencing incarceration. Further research is required to inform, and incorporate, best approaches to identifying patient wishes and advance planning into care within, or despite, the constrains of incarceration. Policy reform and a coordinated, best practice approach to the management of end-of-life care for people experiencing incarceration is needed.

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Who Wants to Die in Here?

Cited by 35 publications

References 28 publications

Empowering Change Agents in Hierarchical Organizations: Participatory Action Research in Prisons

Empowering Change Agents in Hierarchical Organizations: Participatory Action Research in Prisons

A systematic integrative review of programmes addressing the social care needs of older prisoners

A thematic analysis of hospital medical records of patients with advanced illness experiencing incarceration in the last 3 months of life

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