The number of people aging and dying behind bars is growing, bringing greater attention to the need for prison palliative care. While this trend has rightly led to increased scholarship, a focus on understanding the most effective way to deliver prison palliative care has overshadowed thinking about why the need itself has arisen, as well as deeper ethical thinking about how the nursing profession should respond. This article interweaves 4 strands of analysis-contextual, relational, social, and political-to produce a framework to guide ethical action in prison palliative care nursing, relevant to practice, research, policy, and education.
The UK prison population has doubled in the last decade, with the greatest increases among prisoners over the age of 60 years, many of whom are sex offenders imprisoned late in life for 'historical' offences. Occurring in a context of 'austerity' and the wider neoliberal project, an under-researched consequence of this increase has been the rising numbers of 'anticipated' prison deaths; that is, deaths that are foreseeable and that require end of life care. We focus here on 'jail craft'; a nostalgic, multi-layered, narrative or discourse, and set of tacit practices which are drawn on by officers to manage the affective and practical challenges of working with the demands of this changed prison environment. Utilising findings from an empirical study of end of life care in prisons, we propose that the erosion of jail craft depletes protective resources and sharpens the practical consequences of neoliberal penal policies.
CONTEXT: Deaths among incarcerated individuals have steadily increased in the United States, exceeding 5,000 in 2014. Nearly every state has a policy to allow patients with serious life-limiting illness to apply for release from prison or jail to die in the community ("early medical release"). Although studies show these policies are rarely used, patient-level barriers to their use are unknown.
OBJECTIVES: To assess incarcerated patients' knowledge of early medical release policies and to identify patient-level barriers to accessing these policies.
METHODS: A cross-sectional survey of 46 male patients in 2 state prisons and 1 large urban jail who had visited a primary care provider at least three times within three months.
RESULTS: Participants' average age was 64 and 89% had more than one chronic illness. Fewer than half (43%) demonstrated the knowledge needed to apply for early medical release and 22% demonstrated no relevant knowledge. Participants with sufficient knowledge were significantly more likely to endorse anxiety (35% vs 0%, P .003) and loneliness (65% vs. 30%, P .017).
CONCLUSION: Many medically complex incarcerated patients in this study did not demonstrate sufficient knowledge to apply for early medical release suggesting that patient education may help expand access to these policies. Moreover, seriously ill patients with knowledge of early medical release may benefit from enhanced psychosocial support given their disproportionate burdens of anxiety and loneliness. Our findings highlight the pressing need for larger studies to assess whether improved patient education and support can expand access to early medical release.
The US population of inmates continues to increase along with a rapid escalation in the number of elderly prisoners. Previous studies have demonstrated multiple barriers to providing palliative care for seriously ill inmates. The aim of this study was to assess the frequency of palliative care consultation and nature of consultation requests for inmates who died while hospitalized at a large tertiary care hospital. A retrospective chart review of all inmate decedents over a 10-year time period was conducted. The reason and timing of consultation was noted in addition to symptoms identified and interventions recommended by the palliative care team. Characteristics of patients who were transferred to the inpatient palliative care unit were also recorded. Forty-five percent of inmates were seen by palliative care prior to their death. Timing of consultation was close to the day of death. Inmates with cancer were significantly more likely to have a palliative care consultation prior to death. The most frequent intervention recommended was opiates for pain or dyspnea. Delirium was often missed by the primary team but was identified by the palliative care team. Nearly, 5000 prisoners die each year, mostly in community hospitals. These patients exhibit similar symptoms to free-living patients. Given that the inmate population has a higher rate of comorbid conditions, there is a need for more research to identify areas of need for incarcerated patients and where palliative care can best serve these individuals.
Democracy in Eastern Europe arrived after a long fight with a communist regime, and the activities of medical volunteers have been developing in opposition to the existing then in Poland mentality called Homo Sovieticus. From 1981 onwards the Polish Hospice Movement there was inspired by practitioners and international experiences brought by visits of Dr. Cicely Saunders. The history of modern end-of-life care in Poland was connected to caring communities, which could be called compassionate, because of the volunteering of all hospice team members. When palliative medicine started to become a part of the national healthcare programme, the hospice movement was slowly losing its exceptional character of professionals working together with volunteers, accompanied by considerable involvement of church communities. The new way of talking about end-of-life care was proposed in XXI century, and promotion of volunteering was part of it. In Gdansk an innovative program to reintegrate prisoners into society through voluntary work with hospice patients began. Since 2008 the WHAT project was aimed at social reintegration of prisoners through voluntary activities in hospices and correctional institutions from around Poland. In June 2009 Poland was awarded a prestigious prize 'The Crystal Scales of Justice' by The Council of Europe for a project called Voluntary Service of the Convicted in Poland implementing an innovative form of cooperation among prisons, hospices and social welfare homes. The research involving prisoners performing hospice-palliative care volunteering indicates a diverse range of life goals from the inmates not involved in hospices. These innovative correctional programs truly help local communities and prisoners who are currently working in 40 hospices and 70 nursing homes, helping those in need. Adequately prepared inmates who proved to be effective volunteers could be an inspiration to all who want to make end-of-life care more social, more humane and a more universal duty of compassionate communities.
Large and increasing numbers of inmates with chronic and terminal illnesses are serving time, and dying, in U.S. prisons. The restriction of men and women to die in prisons has many ethical and fiscal concerns, as it deprives incarcerated persons of their autonomy and requires comprehensive and costly health-care services. To ameliorate these concerns, compassionate release policies, which allow inmates the ability to die in their own communities, have been adopted in federal and state prison systems. However, little is known about the content of compassionate release policies within U.S. states' department of corrections, despite recent calls to release incarcerated persons who meet eligibility criteria into the community. The current study provides an overview of compassionate release policies in the United States, which vary widely across the compassionate release process. Specific policy recommendations are made to assure the timely access and utilization of compassionate release among eligible incarcerated individuals.
BACKGROUND: There is very little research into the way that offender management strategies impinge on the practices and decision-making of palliative care personnel in community settings.
AIMS: To improve understanding of the challenges that community palliative care service providers encounter when caring for people who have been sentenced to custody and are under the supervision of the prison or probation services.
METHODS: This paper discusses one part of a larger multidisciplinary study on bereavement, loss and grief in the criminal justice system. It reports the findings from a focus group with 10 health professionals working within specialist community palliative care services. Thematic analysis was undertaken to identify and explicate the most significant themes arising from the transcript data.
RESULTS: There were situations where the participants were able to identify that patients were under the jurisdiction of the criminal justice system or had relatives in custody. Three themes emerged that highlighted distinctive aspects of providing care to this patient group. These themes were: patients under prison, probation or police supervision altered the dynamics of care provision; prisoners were restricted from supporting or contacting their dying relatives in the community; and participants (professionals) were obstructed from supporting patients at home because of criminal or antisocial behaviour by relatives of the dying.
CONCLUSIONS: Health professionals face multiple challenges that curtail them from fully realising the aims of palliative care for patients and relatives under criminal justice supervision, in ways that merit further consideration and research.
The prison population is graying as more individuals are receiving longer sentences without opportunities for parole or release for health-related reasons. While research has expanded on end-of-life care in and out of prison settings, to date there has been little research conducted on how inmates experience dying behind bars. Through collecting data during observation of facilitated advance care planning sessions, this qualitative study revealed four main themes: (1) losing a piece of everything, (2) not sure what to feel, (3) where will I die, and (4) finding purpose in the midst of purposelessness. These themes characterize the central issues discussed by inmates as they considered death behind bars. As we seek to improve health care in prison settings, this study provides insight into how inmates view their dying process.
BACKGROUND: The age demographic of the incarcerated is quickly shifting from young to old. Correctional facilities are responsible for navigating inmate access to healthcare; currently, there is no standardization for access to end-of-life care. There is growing research support for prison-based end-of-life care programs that incorporate inmate peer caregivers as a way to meet the needs of the elderly and dying who are incarcerated.
AIM: This project aims to (a) describe a prison-based end-of-life program utilizing inmate peer caregivers, (b) identify inmate-caregiver motivations for participation, and (c) analyze the role of building trust and meaningful relationships within the correctional end-of-life care setting.
DESIGN: A total of 22 semi-structured interviews were conducted with inmate-caregivers. Data were analyzed using Consensual Qualitative Research methodology.
SETTING/PARTICIPANTS: All inmate-caregivers currently participating in the end-of-life peer care program at Briarcliff Correctional Facility were given the opportunity to participate. All participants were male, over the age of 18, and also incarcerated at Briarcliff Correctional Facility, a maximum security, state-level correctional facility.
RESULTS: In total, five over-arching and distinct domains emerged; this manuscript focuses on the following three: (a) program description, (b) motivation, and (c) connections with others.
CONCLUSION: Findings suggest that inmate-caregivers believe they provide a unique and necessary adaptation to prison-based end-of-life care resulting in multilevel benefits. These additional perceived benefits go beyond a marginalized group gaining access to patient-centered end-of-life care and include potential inmate-caregiver rehabilitation, correctional medical staff feeling supported, and correctional facilities meeting end-of-life care mandates. Additional research is imperative to work toward greater standardization of and access to end-of-life care for the incarcerated.
BACKGROUND: Prisons and jails are facing sharply increased demands in caring for aged and dying inmates. Our Toolkit for Enhancing End-of-life Care in Prisons effectively addressed end-of-life (EOL) care; however, geriatric content was limited, and the product was not formatted for broad dissemination. Prior research adapted best practices in EOL care and aging; but, delivery methods lacked emerging technology-focused learning and interactivity.
PURPOSES: Our purposes were to uncover current training approaches and preferences and to ascertain the technological capacity of correctional settings to deliver computer-based and other e-learning training.
METHODS: An environmental scan was conducted with 11 participants from U.S. prisons and jails to ensure proper fit, in terms of content and technology capacity, between an envisioned computer-based training product and correctional settings.
RESULTS: Environmental scan findings focused on content of training, desirable qualities of training, prominence of "homegrown" products, and feasibility of commercial e-learning.
CONCLUSIONS/IMPLICATIONS: This study identified qualities of training programs to adopt and pitfalls to avoid and revealed technology-related issues to be mindful of when designing computer-based training for correctional settings, and participants spontaneously expressed an interest in geriatrics and EOL training using this learning modality as long as training allowed for tailoring of materials.
BACKGROUND: Incarcerated populations worldwide are aging dramatically; in the United States, prisoner mortality rates have reached an all-time high. Little is known about the incarcerated patients who die in community hospitals.
AIM: Compare incarcerated and non-incarcerated hospital decedents in California.
DESIGN: Cross-sectional study.
SETTING/PARTICIPANTS: All state hospital decedents ( N = 370,831) from 2009 to 2013, decedent age over time examined with additional data (2001-2013).
RESULTS: Overall, 745 incarcerated and 370,086 non-incarcerated individuals died in California hospitals. Incarcerated decedents were more often male (93% vs 51%), Black (19% vs 8%) Latino (27% vs 19%), younger (55 vs 73 years), had shorter hospitalizations (13 vs 16 days), and fewer had an advance care plan (23% vs 36%, p < 0.05). Incarcerated decedents had higher rates of cancer, liver disease, HIV/AIDs, and mental health disorders. Cause of death was disproportionately missing for incarcerated decedents. The average age of incarcerated decedents rose between 2001 and 2013, while it remained stable for others.
CONCLUSION: Palliative care services in correctional facilities should accommodate the needs of relatively young patients and those with mental illness. Given the simultaneous growth in the older prisoner population with the rising age of incarcerated hospital decedents, community hospital clinicians should be prepared to care for seriously ill, incarcerated patients. Significant epidemiologic differences between incarcerated and non-incarcerated decedents in this study suggest the importance of examining the differential palliative care needs of incarcerated patients in all communities.
A rapidly aging correctional population has led to an increasing number of patients with serious progressive and terminal illnesses in correctional settings. "Compassionate release" describes a range of policies offering early release or parole to incarcerated patients with serious or debilitating illnesses. However, in many states that have compassionate release policies, few patients are actually granted release. We describe how the continued incarceration of patients with serious or debilitating illness can constitute a violation of human dignity if appropriate palliative care is unavailable. We argue that, given the importance in medical ethics of upholding dignity, physicians should advocate for the appropriate application and use of compassionate release. We describe several opportunities for physicians to take leadership on this issue.
Aging and terminally ill individuals in U.S. prisons are increasing, making critical the need for appropriate end-of-life (EOL) care and advance care planning (ACP). Applying Bandura’s agentic perspective, the authors examined 20 aging/dying offenders’ EOL preferences and ACP. Findings include 6 themes: decisions in the shadow of the past, what works best for me, feeling blessed, what is really going on, can anyone be trusted, and turning agency over to someone else. This study provides critical information that will assist professionals who work with dying offenders, as it presents a vivid illustration of their dying process.
BACKGROUND: Ensuring adequate end-of-life care for prisoners is a critical issue. In France, data investigating the impact of laws allowing release of seriously ill prisoners are lacking.
AIM: To assess the number and characteristics of prisoners requiring palliative care in French prisons.
DESIGN: A prospective, national survey collecting data over a 3-month period.
SETTING/PARTICIPANTS: All healthcare units ( n = 190) providing care for prisoners in France. The prison population was 66,698 during the study period. Data collection concerned prisoners requiring end-of-life care, that is, with serious, advanced, progressive, or terminal illness and life expectancy <1 year.
RESULTS: Estimated annual prevalence of ill prisoners requiring end-of-life care was 15.2 (confidence interval: 12.5-18.3) per 10,000 prisoners. The observed number of prisoners requiring palliative care ( n = 50) was twice as high as the expected age- and sex-standardized number based on the general population and similar to the expected number among persons 10 years older in the free community. In all, 41 of 44 (93%) of identified ill prisoners were eligible for temporary or permanent compassionate release, according to their practitioner. Only 33 of 48 (68%) of ill prisoners requested suspension or reduction in their sentence on medical grounds; half (16/33) received a positive answer.
CONCLUSION: The proportion of prisoners requiring palliative care is higher than expected in the general population. The general frailty and co-existing conditions of prisoners before incarceration and the acceleration of these phenomena in prison could explain this increase in end-of-life situations among prisoners.
La jurisprudence strasbourgeoise n'est que modérément audacieuse en matière de protection des droits des détenus en fin de vie. En l'absence d'un consensus européen imposant des situations de mise en liberté automatique pour les détenus les plus âgés ou pour ceux souffrant de pathologies très graves, la Cour a préféré mettre en place un ensemble de critères qui lui permettent de déterminer, au cas par cas, la conventionalité de mesures prises à l'égard de ces détenus en fin de vie parce que très âgés ou malades.
Le détenu est une personne placée sous écrou, incarcérée dans un établissement pénitentiaire pour y purger une peine de réclusion criminelle ou d'emprisonnement, après avoir été condamnée par une juridiction pénale. La question de la fin de vie en prison se pose évidemment pour toutes les personnes atteintes d'une maladie grave et incurable, nécessitant des soins que l'administration pénitentiaire ne peut pas toujours leur apporter. Cette situation soulève des problèmes éthiques et juridiques délicats à concilier. Le droit français cherche, dans le respect des exigences européennes, à leur apporter des réponses.
L'auteur propose, dans un premier temps, de livrer quelques éléments très généraux relatifs au système pénitentiaire français afin de fixer le cadre dans lequel la prise en charge de la fin de vie se situe. Il examine ensuite comment la question de la fin de vie est concrètement abordée en prison ainsi que les dispositifs mis en place pour la gérer au mieux au quotidien dans un univers par définition très contraignant. Enfin, l'auteur se penche sur les solutions que le législateur a souhaitées développer pour permettre aux détenus en fin de vie une mort digne et apaisée, hors milieu carcéral.
Cet ouvrage rassemble les actes du Colloque organisé par l'Espace de Réflexion Ethique Basse-Normandie et la Faculté de droit de l'Université de Caen Normandie. Cette manifestation scientifique s'est tenue les 19 et 20 mars 2015, soit quelques jours après l'adoption par l'Assemblée nationale, en première lecture, de la proposition de loi Claeys / Leonetti réformant le droit des personnes en fin de vie. Chaque intervenant à ce colloque a eu la possibilité de mettre à jour sa contribution de la loi n°2016-87 du 2 février 2016 créant de nouveaux droits aux personnes en fin de vie et des textes d'application.
Ce document est le recueil des abstracts du congrès intitulé "Quels lieux de vie en soins palliatifs réflexions éthiques" qui s'est déroulé au Centre de Congrès Pierre Baudis à Toulouse le 5 novembre 2010.