Nursing ethics in end-of-life care is often framed in reference to dramatic moral dilemmas and resulting moral distress that nurses experience in practice. While important, this framing obscures the moral significance of nurses’ everyday practice. The purpose of this study was to explore nurses’ moral experiences of palliative and end-of-life care, including situations that are enriching. The research question was: What are the moral experiences of nurses engaged in ethically meaningful situations in end-of-life care? Semi-structured interviews were conducted with five nurses from across Canada who practice in settings where palliative and/or end-of-life care are an important part of their role. Informed by interpretive description and a theoretical scaffold about nurses’ moral practice, a descriptive and thematic analysis of the data was performed. The participants described ethical challenges relating to patient autonomy, futility, prognostication, and navigating requests for medical assistance in dying. Experiences that were ethically enriching involved situations where the nurse, patient, and family worked together to create a peaceful and dignified death. Taken together, the participants’ narratives revealed them as morally engaged in their everyday practice, where such moral engagement is both reflective and relational. This study expands understanding about how nurses’ stories of end-of-life care reveal their capacity for moral sensitivity. This study also contributes to the articulation of a theoretical lens for examining the moral dimensions of nursing work. By explicating the relational dimensions of ethically meaningful experiences, including relationships with wider structures that facilitate and constrain the possibility for ethical action, this theoretical lens can support researchers to think creatively about palliative and end-of-life nursing from an explicitly ethical perspective.

Background. The consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home. Purpose. To compare quality indicator (QI) rates for home care clients receiving palliative and end-of-life care prior to and after the onset of the COVID-19 pandemic. Methods. A retrospective population-based cohort design was used. Sixteen QIs informed by existing literature and a preliminary set of QIs recently evaluated by a modified Delphi panel were compared. Data were obtained from the over 280-item interRAI PC instrument for Ontario home care clients for two separate cohorts: the pre-COVID (January 14th, 2019 to March 16th, 2020) and COVID cohort (March 17th, 2020 to May 18th, 2021). A propensity score analysis was used to match on 21 covariates, resulting in a sample size of 2479 unique interRAI PC assessments per cohort. Alternative propensity score methods were explored as part of a sensitivity analysis. Results. After matching the pre-COVID and COVID cohorts (using nearest neighbour matching), five of the 16 QIs had statistically-significant differences in the QI rates. The two alternative propensity score methods produced slightly different results with fewer statistically-significant differences between the cohorts. However, in examining the effect sizes, the results of all propensity score methods were found to be not clinically meaningful. High rates of the prevalence of shortness of breath with activity, no advance directives, and fatigue were observed in both cohorts and across all three propensity score methods. Discussion. This study is the first to examine differences in QI rates for home care clients receiving palliative and end-of-life care before and during COVID in Ontario. Key limitations in interpreting the results include a limited understanding of the typical variation in QI rates over time and reliance on the comparison of a single proportion (the QI) in judging potential differences in quality. Importantly, a strength of this study was that these QIs focused on outcomes of care and were mainly symptom-focused as aspects of high-quality care valued by home care clients and families and in contrast to previous studies focusing on structure and processes of care. These QIs also indicated how frequently quality concerns may be occurring for those receiving palliative and end-of-life home care. Conclusion. It appears that QI rates did not change over the course of the pandemic in this population. Future work should be directed to understanding the temporal variation in these QI rates, risk-adjusting the QI rates for further comparison among jurisdictions, provinces, and countries and in creating benchmarks to project acceptable rates of different QIs. / Thesis / Master of Science in Nursing (MSN)

AIM - To explore the perspectives of service users and professional staff towards service user involvement within the context of a changing cultural environment at a UK hospice. METHOD - Case study and thematic analysis including interviews with 16 staff including the CEO and 6 service users at a UK hospice. FINDINGS - Three overarching themes were identified: involvement and disempowerment in decision-making; belonging and alienation in a period of organisational change; struggle to maintain wellbeing and identity in a changing culture. A key finding is that service users receiving care from the hospice wanted their voices to be heard, valued and respected for their personal care and issues affecting the hospice. Service users did not consider it a burden to be asked for their views. They felt disempowered by a consultation process about organisational changes that appeared not to take their views on board. There is a need to consider whether a reliance on surveys for involving service users is sufficient or can become tokenistic. External social-political-economic pressures plus increasing privatisation of public services could influence the way that hospices operate in future. This could involve moving from a sanctuary to a business culture and potentially towards managerialism by adopting a regulatory rather than rights-based approach with an emphasis on increasing reach, measuring numbers and hitting targets. Service users being viewed as consumers with a focus on reablement/rehabilitation activities and less on psychosocial support could also serve to push hospices to start behaving more like hospitals. CONCLUSION - More qualitative research is needed to ensure the voices of service users living with a life-limiting illness are heard. The contributions they make towards co-production of services and research should also be heard and influence practice and policy. Service users should also be more involved in education and training of staff.

This thesis analyses doctors empathising with patients in palliative care interactions. Historically, palliative care has treated not only patients physical pain but their emotional pain, as well. Although the importance of empathy (defined for the purposes of this thesis as The doctor s expressed understanding of the patient s emotional experience ) has been emphasised in this environment, however, there has been no prior research showing how palliative care doctors actually empathise with their patients in practice. Drawing upon 37 recordings of doctor-patient consultations collected in a UK hospice, this thesis addresses this omission by using conversation analysis (CA) to analyse several facets of empathy in this environment. The analysis begins in chapter four by considering the ways in which doctors can empathise with patients. It shows how doctors can empathise semantically, either by reworking what the patient has themselves said or by showing understanding on a normative basis. It also considers non-semantic ways of displaying empathy (e.g. response cries), showing how these are fundamentally different to the semantic type of empathic display. Overall, this chapter shows that empathy is not restricted to particular formats but, rather, is dependent upon the content of the doctor s turn. The analysis then moves on consider the wider context of doctors empathic responses. Chapter five, first of all, analyses cases where patients emotions become the topic of the interaction, either because the doctor asks about them directly or because the patient raises an emotionally-implicative topic. The emphasis here is on how palliative care doctors can talk to patients about, and empathise with, their emotions without necessarily having to do anything about those emotions. Chapter six then focuses on cases where patients emotions are discussed alongside the more task-driven aspects of the consultation, either because the patient s physical condition has had an emotional impact on them or because their presenting problem is inherently emotional. In contrast to chapter five, then, the source of the patient s emotions here can be treated by the doctor without the emotions being topicalised. The final two chapters of the analysis focus on doctors empathising with patients not in response to something that the patient has said but in the service of some task. Chapter seven shows how doctors can empathically bridge the gap between their medical and the patient s experiential perspectives at moments where it becomes clear that there is a disparity between the two. These include moments where the patient expresses expectations that go beyond what can realistically be provided, moments where the patient might take offence at the doctor s advice and moments where the doctor must reassure patients about their symptoms without seeming to criticise their emotional responses to those symptoms. Chapter eight, meanwhile, shows how doctors can empathically demonstrate that their practice is being driven by a due consideration of the patient s feelings. Specifically, it shows how doctors can draw upon patients feelings in helping them come to a decision about a treatment, cite those feelings when accounting for a treatment that they have recommended and frame a difficult topic as an outgrowth of sentiments that the patient has already expressed. In conclusion, this thesis shows how empathy is not clearly demarcated in palliative care. While there are cases where patients emotions are discussed and empathised with for the sake of discussing and empathising with them, more commonly, empathy and emotion are interwoven alongside and into the task-driven aspects of consultations. This thesis thus shows the interactional manifestation of palliative care s underlying philosophy, with patients emotional pain addressed alongside their physical pain in an integrated, holistic way.

Background: Place of death is a commonly reported indicator for assessing palliative care quality, but does not provide details of healthcare service utilization at the end-of-life, such as acute care. In particular, early palliative care has shown to reduce acute care service use, but findings are mostly limited to cancer patients with few population-based data available. Objectives: The purpose of this research is to: 1) explore place of care trajectories in the last 2 weeks of life in a general population and among distinct illness cohorts, and 2) investigate whether early versus late palliative care affects acute care use and other publically-funded services in the last 2 weeks of life. Research Design: A retrospective population-based cohort study using linked administrative health data to examine all Ontario decedents between April 1st, 2010 and December 31st, 2012. Methods: Descriptive statistics were used to examine place of care trajectories and service utilization trends in the last 2 weeks of life. Multivariable logistic regression analyses were conducted to assess in the 2 weeks before death: 1) the odds of using an acute care setting (yes/no), and 2) the odds of time spent (≤1 week or >1week) in acute care settings among users. Results: Overall, 235,159 decedents were identified. About 32% had cancer, 31% had organ failure, and 29% had frailty. Overall, 29% of decedents used a hospital two weeks before death, but this increased to 61% on the day of death. Those with cancer were the largest users of palliative-acute hospital care, while those with organ failure were the largest users of acute- hospital care. Assessing palliative care timing, 27% were early palliative care recipients, 13% were late. About 45% of early recipients had a community-based palliative care initiation, 74% of late recipients had a hospital-based initiation. Late recipients were more likely to use acute care settings; this was further modified by disease: comparing late to early recipients, cancer decedents were nearly two times more likely to spend >1 week in acute care settings (OR=1.84, 95%CI:1.83-1.85), frailty decedents were three times more likely (OR=3.04, 95%CI:3.01-3.07), and organ failure decedents were four times more likely (OR=4.04, 95%CI:4.02-4.06). Conclusion: Place of care trajectories differ greatly by disease cohort. Exploring place of care trajectories can provide details not evident when reporting solely place of death. Furthermore, early palliative care was associated with reduced acute care service use in cancer and non-cancer patients. Late initiations were associated with greater acute care use, and had the largest effect on those with organ failure and frailty, suggesting potential opportunities for improvement in non- cancer populations. / Thesis / Master of Science (MSc)