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Background: The Critical Access Hospitals (CAHs) system was developed to bring health care to rural populations. Although CAHs lack equipment and resources, CAH nurses still provide end-of-life (EOL) care to critically-ill and dying patients. Objectives: To determine the largest and smallest ranked obstacles and helpful behaviors to providing EOL care to rural patients as perceived by CAH nurses. Also, to determine how CAH nurses' perceptions of obstacles and helpful behaviors to providing EOL care compare to that of their urban counterparts. Methods: A cross-sectional, nationally representative sample of nurses working in 39 CAHs were sent a questionnaire. Nurse participants were asked to rate obstacle and helpful behavior item sizes to providing EOL care to critically-ill patients. Current data were analyzed and compared with previously collected data obtained from urban-working critical care nurses. Results: Seven of the top 10 largest obstacle items were related directly to family behaviors and attitudes such as families not understanding what lifesaving measures entail and intra-family disagreements about life support. Largest helpful behavior items ranked in the top 10 included interventions which the nurse controls and items that impacted nurses having adequate time to deliver EOL care. The majority of the top 10 largest obstacle and helpful behavior items from the 2015 study, as ranked by urban critical care nurses, remained in the top 10 for the current study. Obstacle and helpful behavior items unique to CAHs such as a lack of resources and the nurse knowing the patient or patient's family fell below the top 10 largest items in ranking. Conclusion: As perceived by nurse participants, obstacles and helpful behaviors to providing EOL care remain similar despite location (rural versus urban). CAH nurses are accustomed to working without typical resources found in urban hospitals and therefore did not perceive resource deficits to be among the largest-ranked obstacles to providing EOL care. Family behaviors and attitudes remain the most dominant obstacle noted by nurses.

Death is inevitable, and research indicates that 80% of Americans wish to die at home. Does anyone know those wishes? Advance directives outline those wishes and personal decisions. Do advance directives make a significant difference in the experience of death for the patient, loved ones, and clinicians? Through interviews with loved ones of those who have died, as well as legal representative and a physician, this thesis examines the benefits and obstacles of having an advance directive, as well as the issues that have a high impact on whether and why an advance directive is written. Policy recommendations, business tactics, and community-based solutions are proposed to address these issues. It is clear that access to healthcare and the clinical professionals who can discuss end of life issues has a major impact on whether an advance directive is considered by the patient, along with health literacy skills and knowledge. / Urban Bioethics

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)

Background: Palliative care is required for patients with an illness that cannot be cured. Palliative care improves the quality of life for patients and their families when they are facing challenges associated with the illness, whether it is physical, psychological, social, or spiritual. The nurse's role in palliative care includes symptom relief, teamwork, communication and to establish relationships, as well as support relatives. Palliative care for the elderly is about making the last phase of life as livable as possible.  Aim: The aim is to highlight the nurse's experiences of caring for elderly in palliative care at the end of life in municipal care. Method: The choice of method for the literature study to contribute to evidence-based nursing was based on analysis of qualitative research. Nine scientific articles were analysed according to Friberg’s five steps model. Results: Three main themes emerged: lack of collegial teamwork, a lack of security for the nurse, prerequisites for good palliative care. Six sub-themes were identified: working alone and the nurse's need for support, the need to collaborate in teams, lack of knowledge about palliative care of the elderly, lack of proper equipment, the nurse's supportive function, a caring relationship with the elderly and relatives.Conclusion: For nurses working in palliative care, support from colleagues was of great importance.

Bakgrund: Sjuksköterskor vårdar patienter i livets slutskede och arbetet medför att möta människor i sorg, vilket kan vara känslomässigt krävande. Medkännande vård är kärnan i sjuksköterskors arbete och med viljan att hjälpa kan dem skapa de bästa förutsättningarna för patienterna utifrån deras behov och preferenser. Genom att tillämpa medkännande vård kan sjuksköterskor arbeta utifrån den palliativa vårdens grunder och etiska plattform. Syfte: Syftet var att beskriva sjuksköterskors erfarenheter av vård i livets slutskede inom onkologisk vård. Metod: Kvalitativ litteraturöversikt med tematisk analys. Resultat: Erfarenhet och strategier var viktigt för att hantera utmaningar och känslomässig stress. Sjuksköterskor spelade en viktig roll för patienter och anhöriga i livets slutskede och skapade förutsättningarna för ett tryggt och värdigt avslut. Slutsats: Erfarenheter beskrivs vara viktigt för att hantera känslomässig stress sjuksköterskor möter vid vård i livets slutskede. Sjuksköterskor utsätts för känslomässig stress i arbetet och riskerar sin känslomässiga hälsa. Sjukvården behöver utarbetade strategier för att förebygga känslomässig ohälsa bland sjuksköterskor. Mer forskning behövs för att säkerställa sjuksköterskors hälsa, annars riskerar sjuksköterskor att lämna yrket med risk för en framtida kompetensbrist. Mer forskning behövs även för att öka kunskapen om kulturella skillnader för att kunna erbjuda en omvårdnad utifrån patienters och anhörigas preferenser. / Background: Nurses care for patients in the final stages of life, which involves encountering people in grief, making it emotionally demanding. Compassionate care is the core of nurses' work, enabling them to create the best conditions for patients based on their needs and preferences. By applying compassionate care, nurses can work according to the principles and ethical framework of palliative care. Purpose: The purpose was to describe nurses' experiences of end-of-life care within oncological care.Method: Qualitative literature review with thematic analysis. Conclusions: Experiences are described as important for managing the emotional stress nurses encounter when caring for patients at the end of life. Nurses face emotional stress in their work and risk compromising their emotional well-being. Healthcare needs to develop strategies to prevent emotional ill-health among nurses. More research is needed to ensure nurses' health; otherwise, nurses may leave the profession, risking a future shortage of competence. Further research is also needed to increase understanding of cultural differences to provide care based on patients' and families' preferences. Keywords: End-of-life care, experience, nurse, oncology, palliative care, terminal care.

Yes / The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population. Methods/design This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage. Discussion This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

- / Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers—an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care.