A systematic literature review exploring the psychosocial aspects of palliative care provision for incarcerated persons: a human rights perspective

Abstract

Purpose: The purpose of this study is to explore the psychosocial aspects of palliative care provision for incarcerated persons drawing on a human rights perspective.

Design/methodology/approach: Seven databases were searched to identify empirical studies published from 2010 to 2020. Articles included were qualitative, quantitative, mixed methods, written in English and with westernised health/prison settings, with a key focus on the psychosocial aspects of palliative care provision and human rights. The quality of the articles was appraised using the Mixed Methods Assessment Tool (2018).

Findings: The results from 26 articles revealed multiple models of care, with the US prison hospice program depicted as optimal, because of the use of trained incarcerated caregivers, working as aides to the interprofessional team. The bereavement needs of caregivers were highlighted. The barriers to adequate psychosocial care were negative public discourse, prison processes and resources, provider attitudes and the incarcerated person's level of knowledge and trust. Identified facilitators were related to incarcerated persons' caregiving programs, a sense of purpose and visitation leniency. Human rights principles were identified in studies that featured compassionate release and advance care planning.

Research limitations/implications: There is inconsistency in the literature regarding what constitutes psychosocial care, which meant that the authors needed to draw on multiple literature sources to formulate a definition. Additionally, the review only included studies written in English, meaning some high-quality studies could have been missed. The articles that conducted interviews with incarcerated individuals were undertaken in male prisons only and not female prisons.

Practical implications: Understanding the importance of psychosocial care for incarcerated persons with a life-limiting illness requires a shift in negative public discourse and the need for a stronger human rights focus. Some countries, such as the USA and UK, are achieving effective outcomes; however, countries such as Australia are yet to contribute to this knowledge base.

Originality/value: If palliative care is a human right, then its philosophy should be considered in its entirety, with the inclusion of psychosocial care.

Keywords: End-of-life; Human rights; Incarceration; Palliative care; Prisons; Psychosocial; Terminally ill.