Ethics of Decision Making for Neonates (neoEOD): a survey of attitudes in the German population

• Applicants: Dr. Lars Garten; Dr. Katja Schneider
• Subject Area: Pediatric and Adolescent Medicine
• Term: from 2021 to 2024
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 456320782

For critically ill patients unable to consent to medical rescue or comfort care measures, the choice is often a decision by proxy. This is inevitable in extremely preterm or very sick newborn infants whose assumed preferences cannot be deduced from prior statements. In this situation, current guidelines recommend a shared decision-making model involving parents and physicians. While values and attitudes of physicians in charge have been subject to repeat scientific assessments, there is a lack of any population-based investigation. The neoEOD project aims to assess the spectrum of current attitudes on ethical values and decisions by proxy for newborn infants at the limits of viability. Issues addressed include protection of life, acceptance of suffering, mental and somatic impairment, and the quality of life. This is a population-based cross-sectional study secured by the help of a professional opinion poll company. Questions specific for this study are added to a set of others exploring sociodemographic variables, consumer choices, or preferences at state elections, involving a total of 2,400 persons to be interviewed. The study is the first to explore the range of values, attitudes and expectations for life-and-death decisions in newborn infants at the limits of viability. The results will hopefully be important for the update of local and national guidelines, inform teaching curricula for obstetricians and neonatologists, and ultimately improve quality of care.

• DFG Programme: Research Grants
• Co-Investigators: Professor Dr. Christoph Bührer; Privatdozentin Dr. Stephanie Roll