End-of-life decision making in the context of chronic life-limiting disease: a concept analysis and conceptual model

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.