There is ample evidence that prison populations around the globe are aging, and many persons will face illness and death while incarcerated.1–6 Several factors contribute to this trend, including zero-tolerance policies, mandatory sentencing, and recidivism. Conviction of historic sex offenders who are currently aged and stricter sentencing practices that result in longer sentences and persons aging in place are particularly significant contributors. In addition, an increasing number of persons who are incarcerated experience compromised health or heightened risk of infectious, chronic, and age-related illness and disability and receive poor-quality medical and mental healthcare within prisons.3,7–11 Cancer is one of the most common illnesses that persons who are incarcerated are at risk for, given its widespread prevalence among aging populations. Specifically, approximately 87% to 89% of all cancer cases are diagnosed in persons older than 50 years in Canada and the United States.12,13 Evidence from the United States on cancer prevalence in correctional settings confirms an increasing number of diagnoses, along with unmanaged pain and poor outcomes.14 As such, there is a growing need in correctional facilities, such as prisons and jails, for cancer care, along with care for the terminally ill and dying more broadly.
Palliative care refers to health and supportive care provided to individuals and their families to promote symptom management and quality of life when facing life-limiting or life-threatening illness, including attention to physical, psychosocial, and spiritual needs.15 Hospice care is another term used to describe care of individuals with terminal illnesses, usually those nearing the end of life. Both palliative care and hospice care include attention to holistic aspects of well-being for those suffering with advanced illnesses. Through a scoping review of the literature, we identified various features of correctional environments that hinder palliative and hospice care provision and attention to the psychological, social, and spiritual needs of persons who are dying while incarcerated and their families (broadly and subjectively defined). Although there has been increased attention to the aging prison population and efforts to address their healthcare requirements, there remains a need for identification of concrete strategies for improving palliative and hospice care in particular.
The objective of this article is to highlight the multilevel barriers described in existing literature through an illustrative case scenario and to explore how the integration of a family nursing approach can benefit palliative and hospice care provision. Specifically, we draw attention to the importance of relational aspects of dying, including the need for a broad definition of family, facilitation of family engagement, and promotion of their involvement in care and decision making across the dying trajectory. While family-centered care is commonplace in palliative and hospice care models, discussion of such a relational approach is largely absent in existing literature on correctional healthcare. In addition, we identify other suggestions for improving access to palliative and hospice care that subsequently uphold the right to care and dignity at the end of life for persons who are incarcerated. Accordingly, we aim to support nurses and other healthcare providers involved in care of those with advanced cancer and other terminal conditions while under the auspices of the correctional system by identifying actions that will contribute to holistic palliative and hospice care.
Correctional healthcare is a complex field of practice, as nurses and other healthcare providers seek to provide appropriate care in an environment focused on custody and detention of persons convicted of crime.16 The delivery of healthcare to correctional populations is heavily influenced by animosities related to personal beliefs, social norms, and political climates.17,18 Personal and public judgments about persons who are incarcerated and whether they deserve healthcare can influence nurses’ decision making and practice. In addition, the infrastructure and resources available within correctional settings also shape care provision.16,19,20 Given the controversial nature of correctional settings, persons who are incarcerated are much less likely to receive care comparable to that available within the healthcare system and community.17 Healthcare provision is also complicated by the immense emphasis on security and punishment within corrections, which dictates that persons who are incarcerated are confined, treated uniformly, and provided only basic necessities.11,20,21 Such treatment has been characterized as isolating, degrading, and dehumanizing22 and has been further exacerbated by many nations’ recent cuts to funding for correctional services prompted by neoliberal policies.11
Accordingly, access to adequate living conditions, let alone quality healthcare, within corrections remains contentious. However, the United Nations Standard Minimum Rules for the Treatment of Prisoners, renamed the Mandela Rules in 2015, states that persons confined to correctional facilities are entitled to healthcare in accordance with professional and community standards.23 The Worldwide Palliative Care Alliance has also emphasized that access to healthcare is a human right, including palliative care that supports a dignified, pain-free death.15 As such, it is imperative that access to appropriate healthcare be available for persons with advanced illnesses across diverse settings.
Nowhere is the tension between confinement and access to appropriate healthcare so pronounced as palliative and hospice care for aging and dying persons who are incarcerated. While palliative care aims to integrate holistic care and support for patients and families coping with advanced illness and end of life,15 access to such care within correctional settings is uncommon. Namely, healthcare services are often limited to primary care,11,24 and treatment of persons with advanced illness is complicated by the lack of specialist services.25 When palliative or hospice care is available within the correctional setting, dying may still be managed as a task-oriented, individual medical issue, with an absence of compassion and human connection for those living their final days in correctional settings. For example, dying while incarcerated is reported to generate feelings of sorrow, loneliness, and suffering due to social isolation, lack of support, and mistrust of correctional staff and healthcare providers.7,8,10,24,26 Additionally, incarcerated individuals often have limited contact with family members, whether they be blood relations or otherwise, due to estrangement, embarrassment, restrictive visitation policies, and geographic barriers.7,24,27 As such, there are few chances to be cared for and supported by family and friends or to reconcile and make amends for past actions.28 Thus, dying in prison is perceived as bringing shame to oneself and one’s family.20,24,25
Although many correctional facilities are not equipped to deliver appropriate palliative and hospice care, release on compassionate grounds is uncommon and requires significant planning and coordination with families and community services, which are complex to execute in a short time frame.11,19,27,29,30 For example, in Canada, compassionate release of dying individuals has sometimes been approved,27,31 but there has been a recent trend toward denial of such requests, with all 28 applications for compassionate release being denied by the Parole Board of Canada in 2014-2015.4 Thus, returning to the community prior to death is not common, and in some cases, persons who are incarcerated might forego a request for release because they lack social support outside the correctional setting.24,27 Therefore, such persons typically remain in correctional facilities until death, regardless of whether appropriate palliative and hospice care exists, or they are transferred to acute care settings late in the dying trajectory.18,20,27 As a result, persons who are incarcerated may receive ineffective palliative and hospice care within corrections and experience a death that is traumatic and lacking in dignity.24–27 Such undignified deaths can have profound impacts on the dying individual and the bereavement experiences of family, other persons who are incarcerated, and healthcare and correctional staff.19,32
Despite that end-of-life care has been declared a human right,15 and withholding healthcare from incarcerated persons is unethical, numerous persons face dying in correctional settings without appropriate care and support. Furthermore, although holistic well-being and family involvement are 2 tenets of palliative and end-of-life care,15 care provision in corrections often lacks the holistic approach common to community-based palliative and hospice care.19 However, correctional nurses and others involved in oncology and palliative care for persons who are incarcerated are well positioned to raise awareness of their right to adequate healthcare. As well, nurses can work to overcome certain barriers to appropriate care for those dying in correctional settings. We provide evidence of the value of adopting a family nursing approach to safeguard the health of individuals and families simultaneously while working within complex systems. As well, we suggest that nurses can promote holistic care provision through collaboration with interprofessional health teams.33 Adoption of a relational approach is particularly helpful in addressing issues related to dying while incarcerated, complicated relationships with family and friends, and meaning making at the end of life. Additionally, nurses can play a key role in communications about healthcare directives and advance care planning,1 something that is largely missing from correctional healthcare.27
To identify global evidence and knowledge about palliative and hospice care in correctional facilities, we conducted a scoping review with the support of an information scientist. We conducted searches for relevant sources that included quantitative, qualitative, or mixed-methods research and gray literature such as policy documents, anecdotal reports, and editorials. Sources included were specific to palliative, hospice, or end-of-life care for adult populations of all genders and were published in English between 2000 and 2014. Following a 4-level relevancy review, a final sample of 128 sources was determined, 32 research articles and 96 gray literature sources. All sources were analyzed thematically using a conventional qualitative content analysis approach.34 Steps involved reading and coding sources relative to thematic categories identified through preliminary review of several sources and during subsequent analysis. Once thematic coding was complete, the findings were synthesized and conceptualized into a model that highlights barriers to palliative care. Drawing upon the scoping review findings and second and third authors’ clinical experiences, a representative case scenario was developed to illustrate common barriers to effective care of a terminally ill man who is incarcerated. The case scenario is discussed with respect to the multilevel barriers that it reflects and how integration of family nursing concepts can improve palliative and hospice care for those with advanced cancer and other terminal conditions in correctional settings.
John Brown is a 57-year-old man serving a life sentence in a Canadian prison. He has been incarcerated since age 44 years and has a history of primary hypertension and prostate cancer that has recently metastasized. John is hesitant to discuss whether he is experiencing pain with nurses in the health unit, but he has recently admitted to pain at 7 out of 10 in his legs and back and on urination. His care includes a fentanyl patch, Flomax, bisphosphonate, and hormone therapy. John gets agitated and suspicious when the topics of comfort care or end-of-life care are raised by healthcare providers, and it is unclear if he understands these conversations or the trajectory of his condition. John’s family lives in another city and is rarely able to visit; when they have traveled to the prison, visits have been brief due to visitation policies. The visits have also caused a great deal of stress for his family members, who are conflicted over whether to visit John under these circumstances. Given the limited contact that John has with his family, he lacks a designated medical decision maker. However, John has bonds with some other prisoners, who he shares similar experiences with; contact with them is restricted however, because he is in the health unit. John is often restless and has expressed concerns that he will die alone while incarcerated.
Overview of Multilevel Barriers
The case scenario illustrates several themes emerging from our analysis and synthesis of the literature, which we summarized in a theoretical model reflecting the individual, relational, institutional, and sociocultural barriers called the IRIS model.35 Inspired by Bronfenbrenner’s ecological systems theory,36 we developed the IRIS model, depicted in the Figure, to provide a comprehensive overview of the issues related to palliative care in correctional settings as identified in existing academic and gray literature. This model captures the context in which palliative care provision occurs for persons who are incarcerated and highlights how barriers to effective care are present at each level in addition to being interrelated.
Described in this level are the experiences of persons who are incarcerated and their perceptions of dying within correctional settings. The situation for John Brown described in the case scenario is common among older men who are being held in correctional facilities. For example, persons who are incarcerated can feel fear, shame, and regret regarding dying in corrections, along with concerns about the meaninglessness of such a death and the impact on others.7,8,10,26 Some persons who are incarcerated might not understand the illness trajectory, treatment options, and the aims of palliative care or possess the mental capacity to make medical decisions19,37,38; however, they might wish for their symptoms to be managed appropriately and preparations for death to be made.39 Regardless, such persons tend to lack control over daily activities, making them voiceless in many ways, including in their ability to fully participate in end-of-life decision making.37 Some can also be influenced by the hypermasculine atmosphere of correctional settings, making them reluctant to admit the need for pain management, which in turn hinders healthcare providers’ efforts to effectively manage pain.38,40
This level captures issues related to interactions between persons who are incarcerated, correctional staff, healthcare providers, and family and community members. In the case scenario, John is challenged to discuss his illness trajectory and advance care directive with healthcare providers. Relations between persons who are incarcerated and correctional staff and healthcare providers are frequently founded on mutual mistrust and lack of empathy, which can be exacerbated when healthcare is required.21,38 For example, some individuals might misunderstand discussions about palliative care to equate to withholding or withdrawing of treatment. Persons who are incarcerated can also have complicated relationships with family members and friends, which might plague them throughout their time in correctional facilities or resurface when dying becomes a possibility.28 Feeling as if they are bringing shame to their families is common, as is estrangement stemming from their criminal conviction.7 However, those who are incarcerated also frequently welcome opportunities to interact with others,25 and thus limitations on interactions with family, friends, and peers can have deleterious effects on reconciliation efforts, healthcare decision making, and fulfillment of final wishes.
This level highlights issues related to constraining policies, costs, physical design, human resources, and knowledge gaps. In the case scenario, John Brown faces situational and policy barriers that are typical of many correctional facilities with limited funds and resources, such as specialized care and healthcare providers with expertise in palliative care.25,41 Additionally, the delivery of care by community-based healthcare providers can be hindered by security issues within correctional settings.42 Issues related to policies and infrastructure were also identified, particularly that correctional facilities and daily routines were designed around young individuals and thus pose issues for those who are aging.19 In addition, security concerns and restrictive policies for visitation with family and peers can limit the possibility of involving them in medical decision making and palliative care activities.27
This level illuminates issues within broader society related to tensions arising from the focus on punishment versus human rights, stigma surrounding criminality, and attitudes regarding funding and resource distribution. Turner and colleagues11 note that neoliberal policies have contributed to the growth in prison populations and increasing numbers of older adults dying in prison, despite that many have not received a life sentence. Furthermore, the persistent stigmatization of corrections and criminality hinders healthcare efforts and funding, diminishing the possibility of accessing services within correctional settings that are equivalent to community standards.17 In John’s case, his pain is not being appropriately managed because of a lack of specialized palliative care services, along with other factors. Additionally, political pressures and societal beliefs about the value of persons who are incarcerated shape existing resources and family experiences. Like John’s family, it is common for families of those in correctional facilities to face social stigma, which can impact their involvement. Furthermore, the shame experienced by families due to a family member’s death in prison increases the risk of disenfranchised and other forms of complicated grief.7,24
Integrating Family Nursing to Address Barriers
While a range of efforts are needed to overcome barriers to adequate palliative care for aging and dying adults living in correctional settings, there are several steps that can be taken to address some barriers. In particular, nurses working in correctional healthcare, or in the community with persons who are incarcerated that have been temporarily transferred for treatment, bring with them knowledge and skills that can be incorporated to benefit the care of those with advanced illnesses, especially with respect to relational issues. Integrating family nursing concepts and practices provides a holistic lens that recognizes the nurse’s obligation to continually support the individual, family, health system, and community to influence change.33 In seeking to navigate personal and public animosities, nurses should recognize that the quality of care available to dying persons affects more than the individual, with undignified treatment and poor management of symptoms having negative impacts on family members, peers, healthcare providers, and correctional staff. Even though the family is often physically absent within correctional settings, this setting can still be a place where family health and relationality are valued in order to provide palliative care that attends to holistic health needs of the individual and their broader social network. As such, nurses and other healthcare providers can seek to address family and relational concerns, which are often central to those who are dying regardless of setting.24,39,43 Also, nurses and colleagues from interprofessional health teams can facilitate a dignified death for persons who are incarcerated through engagement of individuals in healthcare decision making and promotion of respect, modesty, and privacy.
First, family nursing principles can be integrated to promote well-being through therapeutic conversations.44 Meaningful dialog can arise from assessments that attend to individual experiences and family relationships,45 and insight can be gained into holistic health needs, such as fears, informational needs, and pain experiences. For instance, therapeutic conversations have the potential to build trust with persons who are incarcerated, although this might require time to develop as opposed to arising from a single conversation. Continuity in healthcare providers is an important aspect of building trust, along with respectful interactions that validate the person’s concerns.37 The possible benefits of increased trust are immense, including enhancing the depth of conversations about a person’s illness and its trajectory, pain management, and advanced care planning. Nurses can also draw upon existing resources in their efforts to broach difficult topics and support persons who are incarcerated and their families’ engagement in healthcare decision making related to end of life. For example, Enders and colleagues37 recognized the need to consider literacy issues and limited health knowledge when broaching healthcare decisions with women who were incarcerated and developed resources to support healthcare discussions drawing upon this population’s views and priorities. Such resources can contribute to more equitable patient-provider interactions by increasing the persons’ medical understanding and comfort in participating in decisions about care, thus having benefits for individuals, families, and healthcare provision.
In addition, therapeutic conversations could help to identify ways for John to manage the isolation of incarceration24 and promote social connections with his self-defined family25 in ways that align with institutional policies. For example, nurses could initiate such conversations with John to come to know him and whom he considers family (eg, relatives, peers). The 15-minute family interview is one approach, offering an effective and efficient tool to build a collaborative relationship, document a family genogram, provide therapeutic interventions, and offer commendations, whether the conversation takes place with a person or with multiple family members.46 Such information is essential because end of life can be viewed as a relational experience that is influenced by family dynamics and expectations.43 However, it is important to recognize that family is self-defined and can include blood or marital relations or one’s “psychological family,” like-minded individuals who share a history and support one another.47 As such, families might take various forms and include diverse individuals according to personal preferences and circumstances. Employing therapeutic conversations can therefore elicit important insight into family relationships and dynamics that shape a dying person’s views and well-being. In John’s case, he has both relatives and friends who are also incarcerated that make up his family and support network.
Nurses can play a pivotal role in promoting partnership, information sharing, and participation of family members in the care of dying persons who are incarcerated. Specific efforts could be focused on fostering communication with family and identifying ways for involvement in care or decision making where possible. For example, including 1 or 2 of John’s family members in discussions of palliative care and healthcare decision making could promote trust and respect in the therapeutic relationship, improve understanding of his medical condition, and increase the role of family members in decisions about comfort care. This could be done by organizing family meetings in person, by telephone, or using technology. Additionally, collaborative efforts with correctional administrators and staff could also assist with family visitation, which could include advocating for visits and appropriate visitation space, or extended visitation hours when a person who is incarcerated is deemed to be actively dying.25
Although healthcare providers are not responsible for, or in control of, incarceration, they can also act as advocates for fostering hope28 and meaning making in individuals at the end of life. For example, nurses are well positioned to facilitate John’s engagement in legacy planning, saying goodbyes, and resolving issues with family or friends through letter writing and telephone calls.39 Other activities that could be suggested include life review, efforts toward restitution, identification of how persons want to be remembered, and cultural or religious practices, which can be helpful to coping with death anxiety.7,45 Discussion and completion of such activities can contribute to death with dignity. Furthermore, efforts toward acceptance or reconciliation among family members can begin the healing journey within the family system.39 Nurses can promote the health of families by offering these interventions, as the family’s experience of palliative care is known to impact bereavement outcomes.46
Nurses can also play a critical role in the education of correctional staff, administrators, and other healthcare providers about the rights of all individuals to healthcare, including palliative care, the importance of patient and family-centered care, and relational aspects of dying. The need for nurses to take on a central role in promoting greater awareness of these rights is evidenced by the common belief among correctional staff that persons who are incarcerated do not deserve healthcare or to die with dignity.22 While nurses may face personal biases and discomfort with caring for persons who are incarcerated, adoption of an ethical caring stance upholds the delivery of appropriate healthcare because it is the moral and just thing to do.21 As such, adopting and championing a human rights14 or social justice approach to correctional healthcare has the potential to influence the beliefs of correctional staff, administrators, and other healthcare providers, along with the general public, and enhance understanding of the social determinants of crime and health.48 For example, modeling respect or compassion in their interactions with John would be beneficial,25 as would sharing knowledge of effective strategies for communication about pain and sensitive topics with colleagues and encouraging empathic engagement.22,45 Although empathy and respect can be difficult within institutional spaces,22 it might be helpful to remind others that incarceration is the punishment that has been given to these individuals, not withdrawal of their right to healthcare.23 Such efforts can challenge the stigma of incarceration and criminality and encourage compassion within correctional healthcare, which has wide-reaching benefits for persons who are incarcerated, their families, peers, and staff of correctional facilities.49,50
Additionally, nurses should work with members of interprofessional healthcare teams to advocate for access to resources necessary to palliative and hospice care provision. Even simple items that support the care of individuals with advanced conditions and terminal illnesses can be lacking in correctional settings, such as appropriate beds, nutrition, and oxygen.25 The imperative to advocate for better pain management has also been identified, raising the need for healthcare providers to facilitate timely access to care and medication and navigate their own and staff’s suspicions about misuse.25,41 Physical care is a priority among persons who are incarcerated and their families, but holistic needs are also important at the end of life.39 As such, nurses are well positioned to work with other members of healthcare teams to promote access to holistic care, including mental healthcare.45 For example, various support interventions have been developed for persons with advanced cancer that address issues related to existential concerns, acceptance, and meaning-making (see O’Connor45 for examples). John would likely benefit from 1 or more interventions given his struggles to accept his illness and make sense of the possibility of dying alone while incarcerated. Thus, nurses and mental health professionals, such as psychologists and social workers, can introduce relevant interventions and strategies that support coping, coming to terms with dying, meaning making, and psychological and social well-being.
Nurses working within correctional settings can also play an important role by advocating for specialized care and training. The unsuitable nature of correctional infrastructure to palliative care has been widely recognized,41 given that prisons were typically built for young, able-bodied men.8,19 Meanwhile, compassionate release remains relatively uncommon,4,11,19,27,29–31 and some persons might lack a suitable place to die outside a correctional setting. On the other hand, other persons and their families might prefer for death to occur while incarcerated,24,41 resulting in a crucial need for palliative and hospice care to be delivered within the correctional setting. In John’s case, he is cared for within a general health unit because there is no dedicated palliative care unit. However, many correctional healthcare staff are generalists and do not have prior experience in palliative care,41 and training in this area can be lacking.22 Few specialized education programs are described in the existing literature, but one implemented in a correctional setting in the United Kingdom yielded important benefits for both correctional staff and healthcare providers.42 Furthermore, increased collaboration with community-based oncology and palliative care providers has potential to enhance care; however, institutional policies and security issues must also be navigated.41
In some correctional facilities, palliative care or hospice programs exist, such as Angola prison in Louisiana, United States.40 Such programs are exceptional cases, but evidence shows that there are clear benefits arising from the presence of hospice care provision within the institution. For example, these programs promote a more specialized, holistic approach to dying and employ peers as caregivers. There are benefits for dying persons and the peer caregivers, as well as for families and the atmosphere of the correctional institution as a whole.9,32,49,50 These programs have also been found to be cost-effective and beneficial for comfort care.25 Specialized hospice care programs within correctional settings hold great potential for improving delivery of palliative care services and align well with a family nursing approach that attends to relational aspects of health and well-being. Nurses play an important role within these specialized units, working in interprofessional healthcare teams to provide holistic care to dying individuals and support peer caregivers in their roles. However, in order for these programs to be successful and sustainable, there is a need to ensure that support for nurses, other healthcare providers, hospice volunteers, and peer caregivers is available, particularly in the area of bereavement.50
Along with recommendations regarding integration of a family nursing approach into correctional healthcare for individuals with advanced cancer and terminal illnesses, we also call attention to the importance of effective support and resources for those providing healthcare in this challenging environment. Specifically, correctional nurses and those engaged in palliative care for dying persons who are incarcerated require the support of peers, medical specialists, correctional staff and administrators, and the public at large. Working in this contentious environment has many drawbacks, and stress and burnout can be common.22 However, there is also evidence of the rewarding aspects of delivering effective palliative and hospice care in correctional settings for nurses and other healthcare providers41,49 and for volunteers and peer caregivers.9,32 Efforts to address relational issues and ensure access to holistic palliative and hospice care for persons with advanced cancer and other terminal illnesses who are incarcerated therefore have widespread benefits.
Implications for Clinical Practice and Research
We wish to highlight specific implications for clinical practice. Namely, nurses should recognize the importance of relational issues for those facing the end of life while incarcerated, particularly because such persons often have complicated relationships with family members. As well, recognition should be made that family can be subjectively defined and is likely to include friends and/or peers for those living in correctional settings. Drawing upon a family nursing approach can provide an effective lens for communication with incarcerated persons and help to identify specific holistic health concerns that can be addressed through support interventions and access to specialist and mental health services. Implementing simple and practical steps to support engagement with family members can offer benefits to dying persons and their families, including through providing updates to family members and facilitating letter writing, telephone calls, or other technologically supported ways of communicating. It may be necessary to advocate for such activities to be allowed when institutional policies are strict, but emphasis could be placed on the importance of relational aspects of dying and family engagement in healthcare decision making.
Respect and trust are essential components of a family nursing approach, which, although commonly employed by nurses in everyday practice, can be more difficult to exhibit in correctional healthcare because of the animosity that often exists between persons who are incarcerated and staff, as well as others. Incorporation of ethical caring and existing palliative care resources into correctional healthcare can guide and support nurses in effectively fulfilling their roles, as can educational initiatives and collaborations. Furthermore, forging collaborations with palliative and hospice care specialists, including cancer nurses, volunteers, spiritual care workers, and others from community-based organizations, can assist with effective care and support provision. Working together to facilitate training of peer caregivers when correctional hospice programs are being implemented is one example of such efforts. Finally, knowledge of the multilevel barriers to palliative and hospice care for persons who are incarcerated is also important to inform the practice of nurses and others who work in correctional settings. In addition, cancer nurses can benefit from such knowledge because they may be called upon to provide treatment to persons who are incarcerated within the community or correctional facilities. As such, the IRIS model35 can be used as a frame of reference to help evaluate access to healthcare, develop new policies and programs, generate improved understanding of the social determinants of crime and health, and enhance empathic, relational approaches to palliative and hospice care delivery.
There is immense potential for research in this area that aims to improve understanding of the needs of dying persons who are incarcerated, their family members, healthcare providers involved in their care, and correctional staff and administrators. In particular, research could be conducted with nurses practicing in correctional settings, as well as those involved in treating persons who are incarcerated in oncology and community settings. Future research could be driven by such questions: What are nurses’ attitudes toward persons who are dying while incarcerated? What are nurses’ relational experiences of caring for persons facing advanced illness while incarcerated? How do nurses navigate individual, relational, institutional, and societal barriers to effective care related to correctional contexts? In addition, research focused on persons who are incarcerated and their families (as subjectively and broadly defined) could be guided by questions such as: What are the experiences of family members of persons who are dying or have died while incarcerated? What are facilitators and barriers to family member participation in illness-related decision making and palliative care? How is the bereavement experience of family members shaped by the nature of a person’s death while incarcerated?
Incorporation of family nursing and holistic care principles in palliative care delivery can have significant implications for persons who are dying while incarcerated and the well-being of their families and peers, as well as having benefits to correctional settings and society as a whole. Nurses can play an especially important role in healthcare for such persons with advanced cancer and other terminal illnesses through compassionate care provision, respectful interactions, and collaborative efforts with interprofessional healthcare teams, correctional staff and administrators, and peer caregivers in correctional hospice programs. Nurses providing family-focused care will adopt a lens of seeing families as the unit of care33 and find ways to care for the individual within the context of their subjectively defined family, even in challenging situations. Nurses are central to ensuring timely, ethical, effective holistic palliative care and addressing relational aspects of dying. Furthermore, nurses can raise awareness of how persons who are incarcerated and their families are impacted by institutional policies and social stigma. As such, we advocate adoption of a holistic, family nursing approach to palliative care within corrections that recognizes the human right to appropriate care, addresses relational issues surrounding advanced illness and end of life, and promotes attention to other multilevel barriers.
The authors thank Ms Sheila Ens, RN, CHPCN(c), for providing feedback on the initial focus of the scoping review and the case scenario, and Ms Vicky Duncan, MLS, for support with the literature search.
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