A brief sketch of prisoners’ health

Due to disproportionately large numbers of socially disadvantaged individuals in prisons, their health needs are complex, compounded and neglected (Office of the Correctional Investigator & Canadian Human Rights Commission 2019). Many individuals in custody live with multiple comorbidities and chronic illnesses due to poverty, homelessness, and lack of food security prior to incarceration (Office of the Correctional Investigator & Canadian Human Rights Commission 2019). The Report of Ontario’s Expert Advisory Committee on Healthcare Transformations in Corrections (2019) states that incarcerated individuals “are three times more likely to have a mental illness or experience problematic substance use” (p. 8). Poor health of prisoners is often entrenched in previous experiences of colonialism, racism, abuse, poverty, and violence, with vast differences between the overall health of incarcerated individuals and their counterparts in the general population (Bedard et al. Reference Bedard, Metzger and Williams2017; Office of the Correctional Investigator & Canadian Human Rights Commission 2019). Specific adverse factors include family violence, childhood abuse, housing insecurity, lack of education, low-income status, high prevalence of mental health disorders, high rates of suicide, alcohol and drug use, increased exposure to communicable diseases, high-risk sexual behaviors, and physical injuries (Kouyoumdjian et al. Reference Kouyoumdjian, Schuler and Matheson2016). People who experience incarceration bear an unequal burden of illness significantly exacerbated by the lack of access to primary care settings such as family doctors and clinics before and post-incarceration due to stigma, discrimination, and mistrust in the health-care system (Office of the Correctional Investigator & Canadian Human Rights Commission 2019).

Women, whose admission to Canadian federal prisons increased from 170 in 1990–1991 to 562 in 2019–2020, have particularly unique and challenging needs (Office of the Correctional Investigator 2019, 2022). Research conducted with incarcerated women revealed that many are from Indigenous backgrounds, have engaged in previous suicidal behaviors, and have lived through a traumatic event (Office of the Correctional Investigator 2019). Most concerning, half of all federally incarcerated women in Canada are Indigenous (Office of the Correctional Investigator 2022).

Overrepresentation of Indigenous and Black people in Canadian Prisons

The most recent report from the Office of the Correctional Investigator (2021–2022) identified 4 main issues related to conditions in Canadian prisons: the overrepresentation of Indigenous people, the overrepresentation of Black people, outdated drug policies, and the use of solitary confinement. While all 4 concerns are troubling and negatively impact the lives of incarcerated individuals, the overrepresentation of Indigenous and Black people requires special scrutiny. Mirroring the inequities embedded in the societal landscape, the treatment of individuals “who are economically exploited, politically subordinated, or socially excluded” (Reimer-Kirkham et al. Reference Reimer-Kirkham, Stajduhar and Pauly2016, 295) outside prisons leads to the overrepresentation of marginalized groups within them. For example, the overall federal carceral population decreased by 16% in the last 10 years; however, the number of incarcerated Indigenous people increased by 22% in the same period (Office of the Correctional Investigator 2022). This ethnic overrepresentation also extends to maximum security placements, segregation, disciplinary approaches, and use of force incidents (Office of the Correctional Investigator 2022). Despite the appointed role of Correctional Services Canada (CSC) to rehabilitate and reintegrate prisoners back into communities, their policies perpetuate the cycle of reoffending by failing to provide culturally appropriate mental health services, programming, and effective drug strategies such as safe needle exchange and harm reduction measures (Office of the Correctional Investigator 2022). For Indigenous and Black people, these shortcomings are part and parcel of colonial policies.

The effects of colonization are detrimental and profound. They permeate all social, public, political, economic, and cultural spheres and perpetuate inequities across these domains. In Canada, prisons are one area where the effects of colonizing policies continue to reverberate undisturbed (Tetrault Reference Tetrault2022). Indigenous people are excessively overrepresented in federal and provincial prisons, constituting 28% of the Canadian carceral population while accounting for only 5% of the general adult population (Tetrault Reference Tetrault2022). This problem is not unique to Canada, and similar concerning statistics are reported in the United States, New Zealand, and Australia (Tetrault Reference Tetrault2022). Moreover, such overrepresentation is unequal across genders, with Indigenous women bearing a higher cost (Tetrault Reference Tetrault2022). In Canadian provincial prisons, Indigenous women account for 43% of the carceral population compared to 26% of Indigenous men (Tetrault Reference Tetrault2022). Colonialism, systemic discrimination, victimization, and culture clash are among a few reasons why Indigenous women are overrepresented in the Canadian criminal justice system to such a great extent (Clark Reference Clark2019). Acting in concert, these issues create a cycle of victimization and offending for Indigenous women, who are often charged with crimes at either end of this spectrum (Holmes Reference Holmes2017).

Current state of palliative care in correctional settings across Canada and Abroad

“Prison is an unsuitable place for an individual who requires end-of-life care” (Office of the Correctional Investigator 2019, 11). This sentiment articulated by the Office of Correctional Investigator (2019) in the recent report emphasizes fundamental ethical concerns and obligations, the fulfillment of which is crucial for protecting inherent human rights and dignity. Similar views are expressed by numerous individuals in custody who report the fear of dying within the confinements of prisons (Office of the Correctional Investigator 2019). Handtke and Wangmo (Reference Handtke and Wangmo2014) point out that physical palliative symptoms such as pain, respiratory distress, and altered level of consciousness are only one part of the complex and multifaceted aspects that require attention and management at the end of life. To address the psychological, cultural, and spiritual needs of terminally ill prisoners and provide care in accordance with the “whole person” approach rooted in palliative care philosophy, additional provisions might include family support, bereavement, and legal services (Office of the Correctional Investigator 2019; WHO, n.d.; Hudson et al. Reference Hudson, Perron and Wright2019).

Currently, palliative and end-of-life care for older prisoners in Canadian federal prisons falls within the responsibilities of CSC, which, in turn, is not designed or equipped to provide such care (Office of the Correctional Investigator 2019). In one case example, CSC attempted to place a 64-year-old incarcerated man with dementia into long-term care. However, this man lost his placement due to the procedural bureaucracy, inflexibility of the parole board, and his mental health state (Office of the Correctional Investigator 2019).

In contrast, in the United States, medical and geriatric parole models exist to streamline the release of low-risk terminally ill prisoners into the community (Office of the Correctional Investigator 2019). Palliative care units have been established within the correctional system to provide quality end-of-life care with community partnerships and peer volunteers (Office of the Correctional Investigator 2019). For example, Louisiana’s Angola Prison partnered with a local hospice to provide symptom management and palliative care using a collaborative interdisciplinary team model to provide care to prisoners who cannot be released into the community (Handtke and Wangmo Reference Handtke and Wangmo2014). Although some strides have been made to advance the provision of palliative care for incarcerated individuals, many countries around the world, including Canada and the United States, lag in recognizing, establishing, and streamlining access to equitable palliative care within and outside the correctional settings (Bedard et al. Reference Bedard, Metzger and Williams2017). In the meantime, harsh judicial sentencing and rigid compassionate release regulations in Canada mean that countless aging prisoners who pose minimal risk to public safety will experience undue suffering and isolation at the end of life (Office of the Correctional Investigator 2019).

Dignity

The concept of human dignity is central to sustaining moral discourse in ethics, bioethics, and end-of-life care (Pullman Reference Pullman2004). However, ambiguity around the concept of dignity draws criticism from scholars across various disciplines (Pullman Reference Pullman2004). They are rightfully concerned that nebulous and conflicting definitions of dignity lack the necessary precision to guide decision-making in health-care policy development (Pullman Reference Pullman2004). Drawing on the definitions proposed by Rodríguez-Prat et al. (Reference Rodríguez-Prat, Monforte-Royo and Porta-Sales2016), I will attempt to dispel some obscurity around dignity. Among the myriad of pathways that one can ponder dignity, I choose 2 divergent concepts discussed by these authors because they encapsulate inherent and contextual factors that influence one’s perception of dignity. Basic dignity refers to “intrinsic and ontological” aspects of humanity that are fundamentally lasting and absolute (Rodríguez-Prat et al. Reference Rodríguez-Prat, Monforte-Royo and Porta-Sales2016; Pullman Reference Pullman2004, 174). In contrast, dynamic or personal dignity encompasses subjective perspectives of the experiences and the context in which they occur (Rodríguez-Prat et al. Reference Rodríguez-Prat, Monforte-Royo and Porta-Sales2016). To consider dignity at the end of life in the context of incarceration and grounded in palliative care, I leverage the moral significance of inherent human dignity to promote personal dignity behind bars.

In health-care practice, the meaning of dignity becomes illuminated through the contextual elements of relational engagement, policies, places, and technologies (Pols et al. Reference Pols, Pasveer and Willems2018). From the patients’ perspective, dignity is often understood through the mediating elements of autonomy and control (Rodríguez-Prat et al. Reference Rodríguez-Prat, Monforte-Royo and Porta-Sales2016). When considering these elements in relation to each other, the study by Rodríguez-Prat et al. (Reference Rodríguez-Prat, Monforte-Royo and Porta-Sales2016) delineated 3 themes: dignity as the loss of bodily function, dignity as social identity, and dignity as autonomy in decision-making. Similarly, theories of well-being offer discussions on what constitutes a “good death,” the concept closely related to dignity in dying. (Campbell Reference Campbell2020, 607). Campbell (Reference Campbell2020, 609) identified 4 aspects contributing to the perception of a good death: “the place of death, one’s company in death, the cause of death and one’s manner of facing death.” Reflecting on these aspects, the tension between a good death and prison constraints is palpable. For example, the architectural design of prisons is unsuitable to accommodate the disability and frailty associated with aging (Turner et al. Reference Turner, Peacock and Payne2018). Simple accommodations available to the public in the community settings, such as pressure mattresses, accessible showers, and mobility aids, are rarely available and often impossible inside prisons due to the size of cells and prison beds (Turner et al. Reference Turner, Peacock and Payne2018). Restricted by spatial limitations and organizational policies, protecting dignity during end of life can be very challenging within the bounds of incarceration.

The definition of dignity becomes secondary to “the crafting of dignity in a situation that cannot be influenced, or when opposing values clash” (Pols et al. Reference Pols, Pasveer and Willems2018, 90). So, even if society agrees with the notion of basic dignity for prisoners, how can dynamic dignity be enacted in the carceral context? To answer this question, a consideration of the following quote at length is useful:

In other words, basic and personal dignity are socially embedded, created, and maintained through complex inter-relational dynamics. Taking a point of departure from basic human dignity, preserving the personal dignity of prisoners during end of life through timely access to quality palliative care becomes an issue of equity if the standards of such care diverge from those in the general population. Critical analysis of multiple socioeconomic and political realities that underpin health inequities outside the correctional institutions can shed light on how these inequities might be mitigated inside them, beginning with sustaining dignity during end of life.

Body

Dignity as a principle is an abstract concept and becomes tangible only in connection to embodied human beings. But how human beings are viewed in contemporary society is telling. From Plato, who believed that “man is a dual creature,” to Descartes, who was convinced of “a sharp division between spirit and matter,” mainstream Western philosophical traditions embrace the duality of human nature (Gaarder Reference Gaarder1996, 88; 233). This duality draws a sharp division between the mind and the body and between humans and the environment (Mol Reference Mol2021). Such a view of humans is problematic in the way it assigns superiority to the mind over the body and to humans over nonliving things. Drawing on Mol’s (Reference Mol2021) ideas, I propose a more grounded and realistic representation of human bodies where physical aspects of breathing, eating, smelling, tasting, nurturing, and satisfying bodily needs form a new ontological perspective on what it is to be human. Moreover, in turn, this transformed appreciation for physical aspects of human bodies, symbiotic with their surroundings, can disrupt the comfortable avoidance of the needs of incarcerated people as they experience end of life in prison.

In her book Eating in Theory, Mol (Reference Mol2021) uses the term “intellectual apparatus” and problematizes the split of “a lowly, mortal body, and an elevated, thinking mind” (p. 3). Mol’s counterposition is clear:

This line of thought has significant implications for how the bodies of incarcerated individuals are cared for during end of life. It is helpful to separate the connections I am making into 3 themes: the body as inferior to the mind, the body as an object of punishment, and the body as separate from the environment. Mol (Reference Mol2021) elucidates how cognitive processes that convey prestige and value are ranked higher than bodily functions such as eating and breathing and how the pursuit of liberty and truth is respected above labor and experience (Mol Reference Mol2021). The supremacy of empirical methodology in research and societal hierarchal attitudes toward the senses of smell and taste present compelling evidence for this argument (Mol Reference Mol2021). Such dominion of reason and logic over the human body is also evident in carceral systems (Garland Reference Garland2011). Legal, judicial, and social discourses around discipline moved away from the punishment of the body to the “deprivation of liberty” (Garland Reference Garland2011, p.768). A deliberate narrative is constructed around custodial punishment where the “suspension of rights” and freedoms become the target of a penalty with the goal of concealing the body (Garland Reference Garland2011; Foucault Reference Foucault1977, 11). Modern society lacks the medieval proclivity for public displays of brutality, which led to a shift in discipline practices (Garland Reference Garland2011). Foucault (Reference Foucault1977) places this historical shift between the 18th and 19th centuries when the views on crime changed with the beginning of the Industrial Revolution. Two currents can broadly account for this shift. First, humanitarian activists criticized the spectacles of execution and the inhumane practice of torture (Foucault Reference Foucault1977). Second, a more sinister intent led to the development of modern prisons as societal structures of power sought to deter individuals from committing crimes and foster submissiveness (Foucault Reference Foucault1977). The latter represents the sinister element of punishment where discipline and control of prisoners began encompassing both body and mind (Foucault Reference Foucault1977). While this is a brief sketch of complex societal norms and policies that led to the birth of prisons, my goal is to underscore and denounce the current ethos of aversion to bodily pain and suffering. Such aversions are not innocent and inconsequential but have resounding implications for prisoners, especially those with terminal illnesses. Incarcerated individuals remain embodied even after their freedoms and rights are stripped away, and their bodies experience “containment and deprivation” (Garland Reference Garland2011, 768).

Ambitions of early Western philosophers who sought to detach from the body and its environment and seek enlightenment in the reasoning of their minds influenced societal attitudes toward the human body. The disconnect between abstract thought and practical reality is especially palpable in correctional settings where the bodies of prisoners become collateral objects of legal punishment (Garland Reference Garland2011). Both prisoners’ bodies and the carceral environment are hidden from the public view by the clever rhetoric of “suspended rights” (Foucault Reference Foucault1977, 11). However, the suspension of rights has a physical dimension, and incarcerated bodies are not floating in imaginary space but are forcibly tethered to the prisons’ landscape (Garland Reference Garland2011). The literature identifies the elements of carceral institutions, such as sexual violence and deprivation, physical abuse, malnourishment, overpopulation, and inescapable noxious odors (Garland Reference Garland2011). As Crane and Pascoe (Reference Crane and Pascoe2021) eloquently expressed: “living conditions can become chronic health conditions, especially in prisons” (p. 308). In other words, health inequities are exacerbated by social inequities through the apparatus of institutionalization (Crane and Pascoe Reference Crane and Pascoe2021).

Systematic concealment of incarcerated bodies and the environment they inhibit effectively discourages public oversight and silences the critique of practices that call to question equitable access to palliative care. A significant philosophical and practical shift in how bodies are viewed and valued is overdue in current societal discourses.

Death denial

In addition to problematizing the body as conceived in the carceral system, I foreground how the concept of death denial feeds into the problem of the body, permeates multiple spheres of social life, and contributes to inequities during end-of-life experiences in prisons.

An otherwise impermeable prison environment becomes infused with death denial as societal belief and values are played out inside prisons’ culture through the dynamic interaction of its actors. Moreover, death remains a taboo in contemporary Western societies (Robert and Tradii Reference Robert and Tradii2019). Early European anthropologists and sociologists observed human’s struggle to accept the natural phenomenon of death (Robert and Tradii Reference Robert and Tradii2019). In Reflections on War and Death (Reference Freud1918), Freud pondered that while everyone understands death is inevitable, how people behave contradicts this understanding (Robert and Tradii Reference Robert and Tradii2019). Sociological literature suggests that certain philosophical and religious values appear as defence mechanisms to cope with “the incomprehensible reality of death” (Robert and Tradii Reference Robert and Tradii2019, 250). In the late 1950s, British anthropologist Geoffrey Gorer in the article The Pornography of Death (Gorer Reference Gorer and Gorer1955) provocatively remarked that sex replaced death in the taboo realm, with the latter receding from the public discourse (Robert and Tradii Reference Robert and Tradii2019). Later, the same author conducted surveys to explore adults’ relationships with death and noted “the dissolution of mourning” rituals, with the increasing numbers of people dying unaware of their terminal diagnoses (Robert and Tradii Reference Robert and Tradii2019, 251).

Western traditions around death and dying are prolific in their attempt to disconnect and conceal death (Robert and Tradii Reference Robert and Tradii2019). For example, the care for the deceased bodies is often transferred to funeral parlors, and frank conversations about death are replaced with hushed euphemisms, especially around children (Robert and Tradii Reference Robert and Tradii2019). Such pervasive, culturally constructed fear of death and dying can hinder the care provided at the end of life. If caring for diseased loved ones is fraught with conflict and anxiety, then facing the sufferings and often the undignified death of incarcerated individuals is intolerable. As Roulston et al. (Reference Roulston, McKeaveney and Anderson2021, 224) summarized Granse (Reference Granse2003), “offenders are a forgotten class, often receiving societal or professional inattention, indifference, and hostility.”

Shrouded in obscurity and warehoused from public view, the incarcerated population profoundly experiences death denial. Evading mortality is dangerous as it can hinder early assessments and diagnostics, access to pain management, care planning, and ultimately, equity-informed palliative care. If penal systems deliberately conceal bodies and view them as collateral to the deprivation of liberty, then any notion of death is erased. Prisoners’ lives and deaths rendered invisible become “the embodiment of inequality” (Crane and Pascoe Reference Crane and Pascoe2021, 319).

The ripple effect

Beyond impacting the individuals who experience end of life in prison, death in carceral setting profoundly affects those in close proximity and the family and friends beyond prison walls (Roulston et al. Reference Roulston, McKeaveney and Anderson2021). Prison staff and bereaved families are at risk of complicated and prolonged grief disorders, which can lead to social isolation, poor physical and mental health, and substance abuse (Roulston et al. Reference Roulston, McKeaveney and Anderson2021). A scoping review of the experiences of prison staff and bereaved relatives identified many adverse physical and psychological outcomes for those who provide direct and indirect care to prisoners during end of life (Roulston et al. Reference Roulston, McKeaveney and Anderson2021). Staff reported feeling unprepared to support the dying prisoners adequately and manage their emotional needs in the aftermath, especially when the closed-door debriefing strategies isolate them from their peers (Roulston et al. Reference Roulston, McKeaveney and Anderson2021). Faced with the realities of the carceral environment, the bereaved families reported long-term emotional effects from observing the undignified treatment of the dying relatives (Roulston et al. Reference Roulston, McKeaveney and Anderson2021). For example, prisoners are seldom uncuffed and unguarded in their final hours (Roulston et al. Reference Roulston, McKeaveney and Anderson2021). In that sense, marginalization and health inequities extend to families, staff, and other prisoners who live through the experience of death in a correctional setting (Roulston et al. Reference Roulston, McKeaveney and Anderson2021). These examples provide irrefutable evidence that dying in prison constitutes a social justice issue with profound reverberating individual, social, and transgenerational effects.

Places of death

Finally, I situate death in prison within its spatial boundary and consider how lived experiences of prisoners in these spaces relate to the concept of equity. I would like to begin the conversation with questions posed by Knox (Reference Knox2021):

While these questions overestimate the freedom of choice and the extent of human agency around the place of death, they nevertheless underscore the significance of build environment in the dying experience. Physical elements of spaces carry a compounded psychological meaning that is often socially and culturally constructed (Knox Reference Knox2021). Spaces become places as they are assigned individual meanings by invoking personal histories and memories (Relph, 1976, as cited in Knox Reference Knox2021). At the end of life, places become inhibited with time, where its passage is acutely palpable (Knox Reference Knox2021). People often devote this time to reflecting, re-evaluating life stories, and confronting the universe (Knox Reference Knox2021). Imagining carceral environments entrenched with omnipresent authority and surveillance, it is difficult to envision them as spaces of solace, ritual, and reconciliation of one’s mortality.

The space syntax theory postulates how building designs and layouts imply social stratums and the hierarchies of relationships within them (Knox Reference Knox2021). This theory, developed by Bill Hillier and Julienne Hanson, examines social connotations embedded in architectural designs (Knox Reference Knox2021). In other words, “buildings acquire meaning and identity” that guide the expression of acceptable tangible behaviors and foster intangible social practices (Knox Reference Knox2021, 2). Jeremy Bentham’s panopticon, a prison design that allows for continuous surveillance of all prisoners from the central vantage point, exemplifies how designed spaces play more than a nominal role in shaping the relationships of power and control (Knox Reference Knox2021). Some contemporary architecture that mimics the panopticon includes schools, hospitals, malls, and governmental institutions where encounters take a predetermined form and where larger “socially sanctioned” inequities find embodiment (Knox Reference Knox2021, 2).

Where people die and what social, political, economic, and cultural implications it has were explored in North American literature to some extent with the key aim of improving care (Brown and Colton Reference Brown and Colton2001). However, investigations of this phenomenon through a social science lens are scarce (Brown and Colton Reference Brown and Colton2001). Coming a full circle, the ideal locale for dying shifted from hospital to home (Brown and Colton Reference Brown and Colton2001). However, current palliative care policies take their cue from the middle class by emphasizing home and hospice death, erroneously assuming everyone has access to stable housing and other social and fiscal resources to achieve such an ideal (Robinson and Gott Reference Robinson and Gott2020). For incarcerated individuals, such a trend is concerning. More explicitly, compounded effects of incarceration with associated physical, mental, and social deprivations expose prisoners’ vulnerabilities during the end-of-life transitions in achieving dignity, managing sufferings, and coming to terms with mortality. When home death is hailed as an optimal goal, the development and financing of community alternatives and in-prison hospices become inconsequential. It is important to highlight that the idea of in-prison hospices is fraught with tension and critique as some scholars argue they normalize death in prison (Hudson et al. Reference Hudson, Perron and Wright2019). However, lack of responsive, compassionate release policies, lack of community infrastructure, and severed family ties means that many prisoners will experience loss of dignity at the end of life either by contending with existential suffering from dying while incarcerated or being barred from quality palliative care.

Nevertheless, the hidden assumptions of current palliative care policies that proliferate the “home is best” narrative can illuminate the issue of dying in prison. For example, prolonged social exclusion from the outside world and embodiment of institutionalized behaviors often leads to disrupted familial relations, social anxieties and an inability “to transition to life beyond prison” (Crane and Pascoe Reference Crane and Pascoe2021, 313). So, whether the prisoner is released on compassionate grounds due to terminal illness or due to the completion of his sentence, death at home becomes an unachievable ideal as fiscal and social resources are severed. In that sense, “home is best” rhetoric contrasts against the realities of vulnerable groups to reveal how prison death is inequitable. Perhaps, considering structural inequities as experienced by individual prisoners instead of places of death as demarcated by prison walls offers a better understanding of the connections between one’s social gradient and a site of death. I hope such a perspective can inspire solutions where access to quality palliative care, dignity, and solace at the end of life can be achieved for people who experience incarceration.