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.

Global Comparison of Communication of End-of-Life Decisions in the ICU.

BACKGROUND: Prolonging life in the ICU increasingly is possible, so decisions to limit life-sustaining therapies frequently are made and communicated to patients and families or surrogates. Little is known about worldwide communication practices and influencing factors. RESEARCH QUESTION: Are there regional differences in end-of-life communication practices in ICUs worldwide? STUDY DESIGN AND METHODS: This analysis of data from a prospective, international study specifically addressed end-of-life communications in consecutive patients who died or had limitation of life-sustaining therapy over 6 months in 199 ICUs in 36 countries, grouped regionally. End-of-life decisions were recorded for each patient and ethical practice was assessed retrospectively for each ICU using a 12-point questionnaire developed previously. RESULTS: Of 87,951 patients admitted, 12,850 died or experienced a limitation of therapy (14.6%). Of these, 1,199 patients (9.3%) were known to have an advance directive, and wishes were elicited from 6,456 patients (50.2%). Limitations of life-sustaining therapy were implemented for 10,401 patients (80.9%), 1,970 (19.1%) of whom had mental capacity at the time, and were discussed with 1,507 patients (14.5%) and 8,461 families (81.3%). Where no discussions with patients occurred (n = 8,710), this primarily was because of a lack of mental capacity in 8,114 patients (93.2%), and where none occurred with families (n = 1,622), this primarily was because of unavailability (n = 720 [44.4%]). Regional variation was noted for all end points. In generalized estimating equation (GEE) analyses, the odds for discussions with the patient or family increased by 30% (OR, 1.30; 95% CI, 1.18-1.44; P < .001) for every one-point increase in the Ethical Practice Score and by 92% (OR, 1.92; 95% CI, 1.28-2.89; P = .002) in the presence of an advance directive. INTERPRETATION: End-of-life communication with patients and families or surrogates varies markedly in different global regions. GEE analysis supports the hypothesis that communication may increase with ethical practice and an advance directive. Greater effort is needed to align treatment with patients' wishes.

Are religion and religiosity important to end-of-life decisions and patient autonomy in the ICU? The Ethicatt study.

PURPOSE: This study explored differences in end-of-life (EOL) decisions and respect for patient autonomy of religious members versus those only affiliated to that particular religion (affiliated is a member without strong religious feelings). METHODS: In 2005 structured questionnaires regarding EOL decisions were distributed in six European countries to ICUs in 142 hospital ICUs. This sub-study of the original data analyzed answers from Protestants, Catholics and Jews. RESULTS: A total of 304 physicians, 386 nurses, 248 patients and 330 family members were included in the study. Professionals wanted less treatment (ICU admission, CPR, ventilator treatment) than patients and family members. Religious respondents wanted more treatment and were more in favor of life prolongation, and they were less likely to want active euthanasia than those affiliated. Southern nurses and doctors favored euthanasia more than their Northern colleagues. Three quarters of doctors and nurses would respect a competent patient's refusal of a potentially life-saving treatment. No differences were found between religious and affiliated professionals regarding patient's autonomy. Inter-religious differences were detected, with Protestants most likely to follow competent patients' wishes and the Jewish respondents least likely to do so, and Jewish professionals more frequently accepting patients' wishes for futile treatment. However, these findings on autonomy were due to regional differences, not religious ones. CONCLUSIONS: Health-care professionals, families and patients who are religious will frequently want more extensive treatment than affiliated individuals. Views on active euthanasia are influenced by both religion and region, whereas views on patient autonomy are apparently more influenced by region.