Ethics of Finitude: Nursing and the Palliative Approach

Purpose Within the contemporary socio-political context of palliative care and an aging demography, there is a called-for shift to an upstream provision of palliative care in the form of a palliative approach to care as well as to frame access to palliative care within a health equity perspective. In the literature, there is a paucity of nurses’ experiences in the provision of palliative care within psychiatric settings. Moreover, little is known of the process by which nurses engage in a palliative approach to care for patients experiencing multiple marginalities, including institutionalization, mental health, and advanced age. This research explored how nurses in forensic and geriatric psychiatry engage with aging patients and mortal considerations to discern how ethical dimensions of care, aligned within the palliative approach, are enacted. An ethical lens by which to apprehend dimensions of human finitude, reflective of central elements of the palliative approach and public health palliative care, was proposed to help to delineate a process of recognition through which values can be identified in the care of patients. The purpose of this thesis was to explore the phenomenon by which nurses engaged with mortality as both an antecedent to adopting a palliative approach and as a phenomenon that captures nurses’ continued engagement with patients within this approach. Objectives There were three objectives to the project: 1) explore nurses’ engagement with mortality within an ethics of finitude; 2) identify enablers and barriers, and related historical and sociopolitical discourses, to engagement of nurses with their patients within an ethics of finitude, and; 3) articulate and deepen understanding of the palliative approach, including ethical dimensions and considerations. The research was an analytical elaboration of a qualitative study at the NURSING AND THE PALLIATIVE APPROACH vii University of Ottawa that examined the palliative approach to nursing care in forensic and geriatric psychiatry at a mental health facility in eastern Ontario. Methods Situated within a constructivist epistemic stance, the analytical framework elaborated for this analysis drew from both interpretive description (ID) and interpretive phenomenological analysis (IPA). Utilizing convenience sampling, eight Registered Nurses (7 women and 1 man) working in forensic or geriatric psychiatry completed interviews. Findings Engagement of nurses within an ethics of finitude was revealed to surface through a process of recognition (recognition of mortality, recognition of the increased vulnerability of patients, and recognition of a corresponding increased responsibility for vulnerable patients) and through the affirmation of values including human connection, dignity, comfort, family, familiarity, and personhood. Barriers and enablers to this engagement emerged related to the care environment, the psychiatric nurse and patient construction, and factors related to family. The implications of the related discourses in the articulation of the palliative approach emerged in relation to health system considerations and to the language of the palliative approach. Conclusion The process of recognition explored through the proposed ethical lens and revealed in the findings delineated values that underpin the palliative approach by offering an alternate conceptualization to their identification and enactment. Insights from this project underscore preliminary insights on a process to identify care practices aligned within the palliative approach as well as possibilities for critical questioning related to interconnected axes of an ethics of finitude in both the care of individual patients and in the enactment of health policy. NURSING AND THE PALLIATIVE APPROACH 1 Chapter 1: Problem Statement In the context of an aging demography, access to palliative care is a growing public health issue (Stjernswärd, Foley, & Ferris, 2007). In The Way Forward National Framework, the Canadian Hospice Palliative Care Association (CHPCA, 2015), supported by funding from the Government of Canada and the Quality End-of-Life Care Coalition of Canada (QELCCC), articulated a vision for palliative care in Canada in which everyone who is facing problems associated with aging should benefit from a palliative approach to care. The palliative approach, as articulated in the Framework, focuses on meeting patients’ and families’ needs (physical, psychosocial, and spiritual) at all stages of frailty or chronic illness and in patients’ preferred settings of care (CHPCA, 2015). While the CHPCA’s Framework (2015) specifically includes shelters and prisons as examples of where a palliative approach can be provided, patients’ settings of care necessarily include forensic and geriatric psychiatry inpatient units, the care context of this research. The need to improve palliative care access in forensic psychiatry settings is evident and pressing: there is a global growing population of aging inmates in need of palliative care services (Fowler-Kerry, 2003), there is limited research related to the development and implementation of palliative care programs within forensic environments (Fowler-Kerry, 2003), and there are many barriers to the provision of palliative care to psychiatric patients (Terpstra & Terpstra, 2012) including stigma associated with mental illness (Steves & Williams, 2016) and the lack of experience of psychiatric nurses in providing physical care (Morgan, 2016). Moreover, according to Burles, Peternelj-Taylor, and Holtslander (2015) there is a need to improve access to palliative care and to opportunities for a ‘good death’ in correctional settings, including the need for research on the experiences of health care providers in forensic settings relative to how they provide palliative care in an under-resourced context and the need to NURSING AND THE PALLIATIVE APPROACH 2 develop initiatives related to palliative care to address misconceptions and stigma associated with forensic populations. With a focus on psychosocial aspects of care, geriatric psychiatry aims to improve function and quality of life, manage symptoms, coordinate care provision and respond with a multidimensional approach to suffering (Irwin, 2012; Kollas, 2012). Despite parallels with palliative care pertaining to holistic care and the promotion of comfort, gaps are identified in this field of psychiatry related to symptom assessment and management, such as adequate pain management for patients with cognitive impairments, and advance care planning (Irwin, 2012; Shega et al., 2006). It follows that research on the enactment of palliative approach is needed to yield insights to help bridge these care gaps, through a better understanding of how nurses engage in the care of their aging patients. Of the principles that underpin the goals of the Framework, that of equitable access to health services is of particular relevance (CHPCA, 2015). The principle of equity articulated in the Framework helps to delineate research priorities and context insofar that populations evidencing multiple health inequities merit additional critical attention. In so doing, this research responds to the call of Reimer-Kirkham et al. (2016a) to philosophically align palliative care as a social justice issue through a health equity approach and to account for health-threatening and life-limiting contexts informed by structural vulnerability. The principle of equity serves to legitimize the broader exploration of historical and socio-political discourses related to this research context, such as stigma, that influence and shape nurses’ engagement with mortality; such a lens frames nursing as a political activity and in so doing underscores possibilities for nursing advocacy (Perron, Fluet, & Holmes, 2005) NURSING AND THE PALLIATIVE APPROACH 3 The Framework’s focus on chronic disease reflects the reality that this illness presentation now accounts for most deaths worldwide and for increased experiences of uncertainty related to the decline process from illness to death (CHPCA, 2015; World Health Organization [WHO], n.d.). There is therefore a need to explore how nurses engage with their patients and mortal considerations earlier on in their illness trajectories in order to ensure that care provided is aligned with the palliative approach. Moreover, a number of characteristics and values have come to define palliative care, including the element of an open awareness of death whereby mortality is regarded as part of the normal process of living, as articulated in the WHO’s (n.d.) definition of palliative care. However, such an open awareness of mortality, insofar as it transcends treatment or curative aims, represents a challenge to cultural ideals of coherence and order and the social values that underpin modern science, including predictability, control, and certainty (Mishel, 1990). Dominant cultural values ingrained in progress and technological advancement, including a curative orientation in medicine, may function as discourses that stigmatize individuals with chronic life-limiting and terminal illnesses. It follows that patients who decline curative care goals may be socially positioned as aberrant from the culturally reified biomedical norms of predictability, control, and certainty identified by Mishel (1990). The roadmap in the CHPCA’s Framework (2015) articulates the need for a cultural shift in health care practice and attitudes that challenges some of the manifestations of mortalitydenying societal discourses and biomedical values. Part of this called-for attitudinal cultural shift includes educating and supporting health care providers “to help them overcome their own fear of loss, dying, and death” and health care professionals in all settings are called to develop skills and competencies to integrate the palliative approach into routine care requiring that “they must NURSING AND THE PALLIATIVE APPROACH 4 examine their