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Living Before Dying: Nursing Practice in Supporting Meaningful Living for Patients Receiving Home Care at End-of-Life
Jérôme Leclerc-Loiselle1,2, Sylvie Gendron1, Serge Daneault3,4,5
1Faculty of Nursing, University of Montréal, QC, Canada.
Abstract:
Palliative care nursing practice supports individuals and their caregivers through the end-of-life by emphasizing a person-centered approach. However, in practice, nurses must navigate ongoing tensions between organizational norms, professional responsibilities, and the diverse values and wishes of patients, raising questions about how care can remain responsive within complex and constraining contexts. Despite recognition of these challenges, the mechanisms through which palliative care nursing practice sustains meaningful living at the end-of-life remain insufficiently understood. This study examined the mechanisms through which palliative care nursing enables patients to live a meaningful life until death. Using an interpretive descriptive design informed by Sen's capability approach, the study combined three qualitative methods: co-construction of practice narratives with three home-based palliative care nurses, reflexive writing of a personal narrative by the main researcher, and analytical questioning. The analysis identified four interrelated mechanisms that characterize palliative care nursing practice: navigating between patients' valued lives and norms; recognizing patients as simultaneously capable and vulnerable; reflexively engaging with one's own practice; and being creatively present through sensitive and slow actions tailored to each situation. Together, these mechanisms depict a reflexive, relational, and context-sensitive nursing practice oriented toward expanding patients' real possibilities for living a meaningful life until death.
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Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's cancer...