Kristin Levoy1, Elise C Tarbi2, Joseph P De Santis3. 1. NewCourtland Center for Transitions and Health, University of Pennsylvania School of Nursing, Philadelphia, PA. Electronic address: levoy@nursing.upenn.edu. 2. NewCourtland Center for Transitions and Health, University of Pennsylvania School of Nursing, Philadelphia, PA. 3. University of Miami School of Nursing and Health Studies, Coral Gables, FL.
Abstract
BACKGROUND: Conceptual ambiguities prevent advancements in end-of-life decision making in clinical practice and research. PURPOSE: To clarify the components of and stakeholders (patients, caregivers, healthcare providers) involved in end-of-life decision making in the context of chronic life-limiting disease and develop a conceptual model. METHOD: Walker and Avant's approach to concept analysis. FINDINGS: End-of-life decision making is a process, not a discrete event, that begins with preparation, including decision maker designation and iterative stakeholder communication throughout the chronic illness (antecedents). These processes inform end-of-life decisions during terminal illness, involving: 1) serial choices 2) weighed in terms of potential outcomes 3) through patient and caregiver collaboration (attributes). Components impact patients' death, caregivers' bereavement, and healthcare systems' outcomes (consequences). DISCUSSION: Findings provide a foundation for improved inquiry into and measurement of the end-of-life decision making process, accounting for the dose, content, and quality the antecedent and attribute factors that collectively contribute to outcomes.
BACKGROUND: Conceptual ambiguities prevent advancements in end-of-life decision making in clinical practice and research. PURPOSE: To clarify the components of and stakeholders (patients, caregivers, healthcare providers) involved in end-of-life decision making in the context of chronic life-limiting disease and develop a conceptual model. METHOD: Walker and Avant's approach to concept analysis. FINDINGS: End-of-life decision making is a process, not a discrete event, that begins with preparation, including decision maker designation and iterative stakeholder communication throughout the chronic illness (antecedents). These processes inform end-of-life decisions during terminal illness, involving: 1) serial choices 2) weighed in terms of potential outcomes 3) through patient and caregiver collaboration (attributes). Components impact patients' death, caregivers' bereavement, and healthcare systems' outcomes (consequences). DISCUSSION: Findings provide a foundation for improved inquiry into and measurement of the end-of-life decision making process, accounting for the dose, content, and quality the antecedent and attribute factors that collectively contribute to outcomes.
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