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UBC Theses and Dissertations

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UBC Theses and Dissertations

End-of-life planning and care for patients with heart failure and their family members : why nurses and other health care professionals' knowledge, words, and feelings matter Gibson, Jennifer Ann


Heart failure (HF) is a progressive, chronic illness characterized by decompensation episodes and hospitalizations. Life expectancy is only 2 years following HF-related hospitalizations; when complicated by frailty and comorbidities, prognosis worsens. Compared to patients with malignancies, HF patients receive less end-of-life (EOL) planning and specialist palliative care. Patients with HF often die in hospitals, where prolonged dying, inadequately managed symptoms, and worsened suffering for patients/families are commonly reported. Hospital environments have been described as having influence on EOL planning and care. Thus, the purpose of this study was to understand how hospital environments influence healthcare professionals’ (HCPs) thinking about HF-EOL care and structure their approach and practices. The concept of structure was defined within a theoretical framework and informed the study design and research questions. Ethnographic methods and interpretive description guided data collection and analysis. A sample of twenty-two HCPs from various disciplines experienced in acute care and HF-EOL participated from two study sites; data were collected over 250 observation hours and through eighteen semi-structured individual interviews. Data analysis produced three main areas of findings: practice knowledge and notions of expertise; uses and meanings of EOL-related words and phrases; and, emotional and value-based dimensions. Participants commonly framed EOL planning and care as the work of clinical experts and framed expertise in relation to perceptions about the knowledge required for clinical practice in hospitals. Findings about HCPs’ knowledge also related to understandings and interpretations of frequently used EOL-related words such as “palliative.” These EOL-related words were used within interprofessional communications; however, differing interpretations existed. Findings about emotional and value-based dimensions of EOL planning and care work were identified. Emotions and values related to HCPs’ uses of strategies, such as avoiding particular words in order to manage emotion in EOL-related work. Discussion of the findings in this research highlight several implications including the need to more intentionally situate EOL planning and care for patients with HF-EOL as being within all professionals’ scopes of practice. The need to prioritize development of communication competencies for HCPs is also supported. Overall, this study adds new insights about how EOL practices are structured within hospital environments.

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