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

Kristin Levoy, Elise C. Tarbi, Joseph P. De Santis

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)784-807
Number of pages24
JournalNursing Outlook
Volume68
Issue number6
DOIs
StatePublished - Nov 1 2020

Keywords

  • Advance care planning
  • Caregiver
  • Chronic disease
  • Conceptual model
  • End-of-life decision making
  • Measurement

ASJC Scopus subject areas

  • Nursing(all)

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