To Emerge from the Shadows: Motivating Factors of Correctional End-of-Life Care Peer Volunteers

Background and Purpose: With the mass incarceration of aging individuals proving to be a dire crisis in the United States (U.S.), the humane delivery of end-of-life care by imprisoned volunteers for their dying peers is being applied by a growing number of correctional facilities to alleviate the challenges of caring for this marginalized population. This study is dedicated to showcasing the instrumental motivators of peer-volunteers who participate in an end-of-life care program to compassionately support the dying. This novel study depicts the multifaceted experiences of peer-volunteers as described by correctional end-of-life care advocates who train volunteers and champion for dignified health care for imprisoned persons. The significant experiences of these critical peer-volunteers demonstrate not only the exemplary care dispensed by this vital population, yet the immense value derived from the intimate and unique experiences associated with end-of-life care.

Methods: Interpretative phenomenological analysis (IPA), a qualitative approach which aims to provide detailed examinations of personal lived experience, was incorporated. Participants were English-speaking, resided in the U.S., are 18 years of age or older, and identify as advocates for humane correctional end-of-life care, including social workers, nurses, chaplains and those in the non-profit sector. Advocates (n = 12) participated in a recorded interview, via Zoom or telephone, consisting of 15 semi-structured questions which addressed their knowledge of end-of-life care in corrections, recommendations for policy reform, and the meaning-making experiences derived from advocating for essential care to the terminally ill. Participant responses were transcribed and analyzed by maintaining an idiographic focus and providing verbatim quotes.

Results: Participants narratives highlighted three key factors for motivation: (1) to produce goodwill, (2) to advocate for atonement and (3) to emerge from the shadows. Advocates sought and celebrated opportunities which showcased how peer-volunteers reflected upon and comprehended their integral and compassionate skillset. Moreover, they continuously showcased the productivity of incarcerated individuals within their interviews, revealing peer-volunteer caregivers as valuable assets to society as essential care team members. Having long been classified by society as inept and careless, advocates relished occasions to applaud the immeasurable contributions of compassionate care by peer-volunteers. Findings were reflective of the significant bonds formed between peer-volunteer caregivers and dying incarcerated individuals.

Conclusions and Implications: Current evidence indicates that the intricacies of care, paired with a lack of funding and inadequate access to vital resources, has created numerous challenges in delivering end-of-life care to dying incarcerated individuals. This study, however, has the potential to validate the advocacy of clinical social workers to promote end-of-life care interventions that foster positive, transformative experiences for both patients and their peer-caregivers. Moreover, this study will provide a better understanding and evaluation of peer-volunteer end-of-life care programs that presently exist and will provide deep insight in how these programs can be enhanced. Further, this study can assist social work researchers to illuminate the various enmities that currently exist towards the provision of end-of-life care in correctional settings. Social workers are well-situated to ameliorate negative public perceptions and current policies impacting warranted access to health care for imprisoned persons.