A Consensus Definition of End of Life from an International and Interdisciplinary Perspective: A Delphi Panel Study

Abstract

Background: Those working in the field of palliative care have recognized that many terms are being used synonymously and that clear definitions (or any definitions) for many of these terms are lacking. The synonymous use of the terms palliative and end of life (EOL) can especially lead to conflicts in clinical practice, such as a tardy referral to palliative care. Such conflicts may then result in poorer treatment of patients, for instance, pain management. In research, the lack of clear definitions or even of any established definition for central concepts, such as EOL, weakens study validity and research outcomes. Objective: The aim of this study was to establish a concise definition for the EOL phase. Design: A modified Delphi study design was chosen. A structured questionnaire based on a previously conducted concept analysis about the EOL was used. Setting: A panel of international and interdisciplinary experts was established. Between 34 (1st round) and 21 (4th round) individuals participated in the anonymous online expert panel. Results: After four panel rounds, we were able to provide a definition which covers physical and psychosocial aspects that should be considered at the beginning of the EOL phase and possible predictions about the remaining time. The definition also covers aspects of EOL care, such as considerations related to the individual's dignity, spirituality, and maintenance of relationships. Conclusion: EOL is a term which is defined by considering multiple aspects that affect the process of identifying the EOL phase, the EOL phase itself and the resulting care options.

Keywords: Delphi study; definition; end of life; end-of-life care; palliative.