As the number of prison inmates facing end-stage chronic illness grows, more prisons across the U.S. must address the need for end-of-life care. Many will likely need to develop a plan with potentially limited resources and external support. This case study presents one long-running model of care, the Louisiana State Penitentiary Prison Hospice Program. Based on field observations and in-depth interviews with hospice staff, inmate volunteers and corrections officers, we identify five essential elements that have contributed to the long-term operation of this program: patient-centered care, an inmate volunteer model, safety and security, shared values, and teamwork. We describe key characteristics of each of these elements, discuss how they align with earlier recommendations and research, and show how their integration supports a sustained model of prison end-of-life care.
Healthcare professionals may improve the quality of life of patients with terminal HCC by eliciting patients' perceptions of their illness and treatment decisions, symptom experiences, and information needs as the disease progresses and providing symptom management and offering information tailored to their needs. Care for patients with HCC who are approaching the end of life should be multidisciplinary and include timely referral to palliative care.
Nurses play a critical role in preparing caregivers to understand the importance of pain assessment and management and early referral to palliative care.
Findings were similar to those reported from other countries. Emotional/interrelational aspects of care were integral to family member satisfaction with care provided. Findings suggest that improving communication and decision-making, supporting family members, and caring for family loved ones as a person are important care targets. Initiatives to improve ICU care should include assessments from families and opportunity for qualitative analysis to refine care targets and assess changes.
The increasing numbers of aging and chronically ill prisoners
incarcerated in Western nations is well documented, as is the growing need for
prison-based palliative and end-of-life care. Less often discussed is
specifically how end-of-life care can and should be provided, by whom, and with
what resources. One strategy incorporates prisoner volunteers into end-of-life
services within a peer care program. This article reports on one such program
based on focused ethnographic study including in-depth interviews with inmate
hospice volunteers, nursing staff, and corrections officers working in the
hospice program. We describe how inmate volunteers learn hospice care through
formal education and training, supervised practice, guidance from more
experienced inmates, and support from correctional staff. We discuss how
emergent values of mentorship and stewardship are seen by volunteers and staff
as integral to prison hospice sustainability and discuss implications of this
volunteer-centric model for response-ability for the end-of-life care of
prisoners.
We conducted a prospective study in the ICU of life-sustaining treatment and comfort care decisions over time in patients with end-stage liver disease from the perspectives of patients, family members, and health care professionals. Six patients with end-stage liver disease, 19 family members, and 122 professionals participated. The overarching theme describing the decision-making process was “on the train.” Four sub-themes positioned patients and family members as passengers with limited control, unable to fully understand the decision-making process. Findings suggest that including patients and family members in non-immediate lifesaving decisions and verifying early on their understanding may help to improve the decision-making process.
Delivering high-quality palliative care in the ICU requires assessing key patient-centered domains. However, assessments from different perspectives do not always agree with technical quality of care as measured through chart-based metrics. We found deficits across seven domains of technical quality that were not correlated with either nurse or family ratings. Despite care gaps, families were generally satisfied with the care delivered. We conclude that each measurement perspective provides an independent view that can guide quality improvement and innovation work as well as subsequent research.
Some US prisons are meeting the growing need for end-of-life care through inmate volunteer programs, yet knowledge of the motivations of inmate caregivers is underdeveloped. This study explored the motivations of inmate hospice volunteers from across Louisiana State (n = 75) through an open-ended survey, a grounded theory approach to analysis, and comparison of responses by experience level and gender. Participants expressed complex motivations; Inter-related themes on personal growth, social responsibility and ethical service to vulnerable peers suggested that inmate caregivers experience an underlying process of personal and social transformation, from hospice as a source of positive self-identity to peer-caregiving as a foundation for community. Better understanding of inmate caregiver motivations and processes will help prisons devise effective and sustainable end of life peer-care programs.
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