Neonatal End-of-Life Decision Making: Physicians' Attitudes and Relationship With Self-reported Practices in 10 European Countries

• Published in: JAMA : the journal of the American Medical Association 2000-11, Vol.284 (19), p.2451-2459
• Main Authors: Rebagliato, Marisa, Cuttini, Marina, Broggin, Lara, Berbik, István, de Vonderweid, Umberto, Hansen, Gesine, Kaminski, Monique, Kollée, Louis A. A, Kucinskas, Audrũnas, Lenoir, Sylvie, Levin, Adik, Persson, Jan, Reid, Margaret, Saracci, Rodolfo, for the EURONIC Study Group
• Format: Article
• Language: English
• Subjects: Adult; Anesthesia. Intensive care medicine. Transfusions. Cell therapy and gene therapy; Attitude to Death; Attitudes; Babies; Bioethics; Biological and medical sciences; Data Collection; Death & dying; Decision Making; Emergency and intensive care: neonates and children. Prematurity. Sudden death; Ethics, Medical; Europe; Factor Analysis, Statistical; Female; Health care; Humans; Infant, Newborn; Infant, Newborn, Diseases - therapy; Intensive care medicine; Internationality; Linear Models; Male; Medical ethics; Medical sciences; MEDICIN; MEDICINE; Middle Aged; Neonatology; Palliative Care; Physicians; Practice Patterns, Physicians; Prognosis; Quality of Life; Terminal Care
• ISSN: 0098-7484; 1538-3598; 1538-3598
• DOI: 10.1001/jama.284.19.2451

CONTEXT The ethical issues surrounding end-of-life decision making for infants with adverse prognoses are controversial. Little empirical evidence is available on the attitudes and values that underlie such decisions in different countries and cultures. OBJECTIVE To explore the variability of neonatal physicians' attitudes among 10 European countries and the relationship between such attitudes and self-reported practice of end-of-life decisions. DESIGN AND SETTING Survey conducted during 1996-1997 in 10 European countries (France, Germany, Italy, the Netherlands, Spain, Sweden, the United Kingdom, Estonia, Hungary, and Lithuania). PARTICIPANTS A total of 1391 physicians (response rate, 89%) regularly employed in 142 neonatal intensive care units (NICUs). MAIN OUTCOME MEASURES Scores on an attitude scale, which measured views regarding absolute value of life (score of 0) vs value of quality of life (score of 10); self-report of having ever set limits to intensive neonatal interventions in cases of poor neurological prognosis. RESULTS Physicians more likely to agree with statements consistent with preserving life at any cost were from Hungary (mean attitude scores, 5.2 [95% confidence interval {CI}, 4.9-5.5]), Estonia (4.9 [95% CI, 4.3-5.5]), Lithuania (5.5 [95% CI, 4.8-6.1]), and Italy (5.7 [95% CI, 5.3-6.0]), while physicians more likely to agree with the idea that quality of life must be taken into account were from the United Kingdom (attitude scores, 7.4 [95% CI, 7.1-7.7]), the Netherlands (7.3 [95% CI, 7.1-7.5]), and Sweden (6.8 [95% CI, 6.4-7.3]). Other factors associated with having a pro–quality-of-life view were being female, having had no children, being Protestant or having no religious background, considering religion as not important, and working in an NICU with a high number of very low-birth-weight newborns. Physicians with scores reflecting a more quality-of-life view were more likely to report that in their practice, they had set limits to intensive interventions in cases of poor neurological prognosis, with an adjusted odds ratio of 1.5 (95% CI, 1.3-1.7) per unit change in attitude score. CONCLUSIONS In our study, physicians' likelihood of reporting setting limits to intensive neonatal interventions in cases of poor neurological prognosis is related to their attitudes. After adjusting for potential confounders, country remained the most important predictor of physicians' attitudes and practices.