Quality of dying and death in the ICU. The euroQ2 project

Purpose: Knowledge of families' perspective of quality of intensive care unit (ICU) care is important, especially with regard to end-of-life (EOL) care. Adaptation of the US-developed "Quality of dying and death questionnaire" (QODD) to a European setting is lacking. The primary aim of this study is to examine the euroQODD's usability and its assessments of EOL care in a cohort of Danish and Dutch family members. Methods: Family members of patients dying in an ICU after a stay of at least 48 h were sent the euroQODD three weeks after the patient died. Selected patient characteristics were obtained from hospital records. A total of 11 Danish and 10 Dutch ICU's participated. Results: 217 family members completed the euroQODD part of the euroQ2 questionnaire. Overall rating of care was high, a median of 9 in Netherlands and 10 in Denmark on a 0-10 scale (p < 0.001). The Danish were more likely to report adequate pain control all or most of the time (95% vs 73%; p < 0.001). When decisions were made to limit treatment, the majority of family members agreed (93%). Most (92%) reported some participation in the decision-making, with half (50%) making the decision jointly with the doctor. About 18% would have preferred greater involvement. Factor analysis identified a six-indicator unidimensional quality of dying and death construct with between-country measurement invariance. However, in its current form the euroQODD instrument requires modeling the six items as reflective (or effect) indicators, when they are more accurately conceived as causal indicators. Conclusions: The majority of family members were satisfied with the quality of EOL care and quality of dying and death. They agreed with decisions made to limit treatment and most felt they had participated to some extent in decision-making, although some would have preferred greater participation. Addition of items that can be accurately treated as effect indicators will improve the instrument's usefulness in measuring the overall quality of dying and death. (C) 2017 The Authors. Published by Elsevier Inc.