Changes in communication of end-of-life decisions in European ICUs from 1999 to 2016 (Ethicus-2) - a prospective observational study

Purpose: We investigated changes in communication practice about end-of-life decisions in European ICUs over 16 years.

Materials and methods: This prospectively planned secondary analysis of two observational studies in 22 European ICUs in 1999-2000 (Ethicus-1) and 2015-16 (Ethicus-2) included consecutive patients who died or with limitation of life-sustaining therapy. ICUs were grouped into North, Central and South European regions.

Results: A total 4592 patients were included in 1999-2000 (n = 2807) and 2015-16 (n = 1785). Information about patient wishes increased overall (from 25.4% [570] to 51.1% [840]) and in all regions (42% to 61% [North], 22% to 56% [Central] and 20% to 32% [South], all p < 0.001). Discussions of treatment limitations with patients or families increased overall (66.0% to 76.1%) and in Northern and Central Europe (87% to 94% and 75% to 82.2%, respectively, all p < 0.001) but not in the South. Strongest predictor for discussions was the region (North>Central>South) followed by patient decision-making capacity.

Conclusion: End-of-life decisions are increasingly discussed but communication practices vary by region and follow a North-South gradient. Despite increased availability of information, patient preferences still remain unknown in every second patient. This calls for increased efforts to assess patient preference in advance and make them known to ICU clinicians.