A call to action to support terminally ill incarcerated people
By Mar’yana Fisher
July 18, 2022
Recently, I was told that the issue of quality and accessibility of palliative care for Canadian prison inmates is not a focus of nursing practice. While this was perturbing, it did not discourage me.
Is the nursing profession no longer responsible for providing palliative care? Do the ethics of our practice not guide us to advocate for the needs of all patients without discrimination? Or has our moral fibre been frayed by the COVID-19 pandemic, eroding the caring aspect of our profession?
As I grapple with these questions, I reflect on US entrepreneur Aaron Levie’s remark that “innovation is hard because solving problems people didn’t know they had and building something no one needs look identical at first.”
Palliative care and dying with dignity
Sustainable palliative approaches to care for Canadian inmates and the preservation of dignity in death and dying within the bounds of incarceration are two issues that receive inadequate attention on all levels of public and health-care discourse. Nevertheless, addressing these problems has significant ethical and fiscal implications, particularly for health-care systems.
Currently, palliative care for inmates in Canada is largely left to Correctional Service Canada, which was never designed or equipped to provide such care. Within prison walls, inmates’ end of life is fraught with fears for personal safety, increased suffering due to unmanaged pain, and feelings of isolation.
The right to die with dignity must be upheld as a shared universal privilege.
Just as the number of aging and dying individuals in correctional settings is on the rise for reasons beyond the scope of this article, so is the need to address their health concerns and protect the sanctity of dignifying death. Currently, 25 per cent of the Canadian federal prison population is 50 years of age or older, and that percentage is expected to climb (Office of the Correctional Investigator, 2020). At the same time, a lack of qualified personnel who are trained to provide specialized care within the correctional setting acts as a compounding barrier to the delivery of palliative services and the recognition of holistic needs of terminally ill inmates (Burles, Holtslander, & Peternelj-Taylor, 2021).
The right to die with dignity must be upheld as a shared universal privilege regardless of age, gender, nationality, and social setting. In addition, owing to the overrepresentation of socially disadvantaged individuals in prisons, the health needs of inmates are complex, compounded, and costly (Ontario Expert Advisory Committee on Health Care, 2019). Beyond the societal moral imperative to safeguard the right to die with dignity for all persons, a sustainable palliative approach to care in and outside of prisons can improve the quality of care, reduce suffering, and mitigate staggering health-care costs associated with current practices.
Canadian nurses, regardless of their area of practice, are professionally situated to actively advocate for quality and accessibility of palliative care for inmates within prison and in the community, when appropriate. Nursing actions at the micro, meso, and macro levels are crucial to the advancement of scholarship, research, education, policy, and — most importantly — to the establishment of practical guidelines and procedures that will enable holistic palliative care for terminally ill individuals in custody.
For example, on the micro level, the stigma of incarceration, discrimination, and mistrust in the health-care system acts as an impediment to the development of rapport and therapeutic relationships between nurses and inmates. To address these barriers, nurses can employ relational engagement to develop mutual respect with incarcerated patients and their families and provide trauma-informed care, as the poor health of inmates is often entrenched in previous experiences of colonialism, racism, abuse, poverty, and violence. Moreover, nurse educators can prepare future nurses to reflect on personal beliefs and biases to foster the delivery of compassionate care to diverse groups.
At the meso level, the lack of quality guidelines and palliative assessment tools for inmates prevents timely identification of these patients and the delivery of crucial interventions that relieve unnecessary suffering and pain. For example, the Palliative Performance Scale, which assesses patients’ mobility, oral intake, and activity levels (among other indicators) is widely used in hospital and community settings, but does not have an equivalent for a prison population. Yet, the landscape of inmates’ lives, the context of patients’ care, and the environmental conditions of assessment are drastically disparate. Bridging this gap, nurses can develop best-evidence guidelines and frameworks that can guide appropriate interventions for terminally ill inmates and assist in advocating for a timely, palliative approach to care.
With regard to the social justice perspective, nursing advocacy on the macro level includes active participation in policy reform, creating unique community partnerships, guiding organizational changes, and cultivating a paradigm shift to address equitable access to palliative care for inmates. What is needed is scrutiny of dominant hegemonies that underpin current social and economic policies within the domains of human rights, criminal justice, and health-care systems. Specifically, nurses can help to re-envision policies that support timely, compassionate releases for terminally ill inmates and that prioritize government spending on developing critical infrastructure, such as in-prison hospices and community placements.
The “sleeping giant”
In 1998, the Royal College of Nursing in the UK expressed the view that “[the] nursing workforce remains very much a sleeping giant.” I believe this perception remains today. Perhaps unknowingly, the nursing workforce represents a tremendous authority as change agents in promoting wellness, advancing health innovations, and envisioning sustainable health-care systems. While this is true for all areas of practice, vulnerable populations in Canada, such as prison inmates, would benefit greatly from nursing efforts to answer this clarion call and employ a critical social lens to the provision of palliative care.
Fundamental barriers exist with regard to access and availability of palliative strategies for vulnerable groups in our communities. Among such services, the provision of palliative care for inmates has become an ever-widening gap. Regardless of the remarkable ethical dissonance that prevails between the principles of bioethics and the harsh landscape of correctional settings, advocating for inmates who require palliative care across all spheres of nursing influence constitutes a nursing moral imperative of the highest order.
Burles, M., Holtslander, L., & Peternelj-Taylor, C. (2021). Palliative and hospice care in correctional facilities: Integrating a family nursing approach to address relational barriers. Cancer Nursing 44(1): 29–36.
Office of the Correctional Investigator. (2020). Annual Report, 2019–2020. Toronto: Author.
Ontario Expert Advisory Committee on Health Care. (2019). Transformation in corrections. Transforming health care in our provincial prisons. Toronto: Author.
Royal College of Nursing (1998). Imagining the Future: Nursing in the New Millennium. London: UKRCN.
Mar’yana Fisher, LLB, BA (psychology), BSN, is a registered nurse working in palliative care at Vancouver General Hospital and is in the final stages of completing her MSN degree.