Improving End-of-Life Communication and Decision Making: The Development of a Conceptual Framework and Quality Indicators

Abstract

Context: The goal of end-of-life (EOL) communication and decision making is to create a shared understanding about a person's values and treatment preferences that will lead to a plan of care that is consistent with these values and preferences. Improvements in communication and decision making at the EOL have been identified as a high priority from a patient and family point of view.

Objectives: The purpose of this study was to develop quality indicators related to EOL communication and decision making.

Methods: We convened a multidisciplinary panel of experts to develop definitions, a conceptual framework of EOL communication and decision making, and quality indicators using a modified Delphi method. We generated a list of potential items based on literature review and input from panel members. Panel members rated the items using a seven-point Likert scale (1 = very little importance to 7 = extremely important) over four rounds of review until consensus was achieved.

Results: About 24 of the 28 panel members participated in all four rounds of the Delphi process. The final list of quality indicators comprised 34 items, divided into the four categories of our conceptual framework: Advance care planning (eight items), Goals of care discussions (13 items), Documentation (five items), and Organization/System aspects (eight items). Eleven items were rated "extremely important" (median score). All items had a median score of five (moderately important) or greater.

Conclusion: We have developed definitions, a conceptual framework, and quality indicators that researchers and health care decision makers can use to evaluate and improve the quality of EOL communication and decision making.

Keywords: Advance care planning; communication; decision making; end-of-life care; modified Delphi study; palliative care; quality indicators.