End‐of‐life decisions for extremely preterm infants – a matter of language, gender and education?

Most of the paediatric patients who die are neonates. Pregnancy complications, including extreme prematurity, childbirth and congenital malformations, account for more deaths in childhood than malignancies and accidents combined, both in highand low-resource countries. Neonatologists are more likely than other paediatricians to be confronted with dilemmas about the limits of viability and withwhatmedicine can and cannot achieve. Thatmeans that they face questions that are inherently difficult to answer, such aswho decideswhich babies should not be resuscitated, when should mechanical ventilation be stopped and what kind of surgery should not be performed? Furthermore, what determines whether life itself, or its perceived quality, should be the ultimate goal of medical interventions? A study carried out in a number of European Union countries in 1996/1997 – the European Project on Parents’ Information and Ethical Decision Making in Neonatal Intensive Care Units (EURONIC) – found that the country of residence was pivotal when it came to neonatologists’ attitudes about endof-life decision-making (1–4). For example, only theminority (46%) of Italian neonatologists surveyed said they had ever withheld orwithdrawn intensive care in an infantwith a poor neurological prognosis, as opposed to 69% of German and 85% of French neonatologists (1). When presented with a case vignette of a preterm infant of 24 weeks of gestation with severe intraventricular haemorrhage, about 50% of the Italian and German neonatologists surveyed would have favoured continuing intensive care, as opposed to less than 4% of the French neonatologists (2). There were also large differences with regard to the role of parents in end-of-life decisions. The majority of respondents in France (59%) and Italy (55%) would implement their decision without involving parents, as opposed to 18% in Germany. When parents and doctors disagreed about continuing intensive care, approximately half of the neonatologists in all of the countries surveyed felt that the parents’ wishes to continue intensive care should be respected, while less than 15% of respondents felt that the parents should be the ultimate decision-makers when they requested termination of intensive care (3). Physicians from the various European countries who were surveyed in the EURONIC study 20 years ago disagreed strongly about withholding or withdrawing intensive care, but were united in their reserved stance on shared decision-making. Switzerland, which is wedged in between Italy, France and Germany, did not participate in the original EURONIC study, as it is not a member of the European Union that financed the study. However, a survey that was conducted several years later using the original EURONIC questions revealed mixed attitudes among Swiss neonatologists. No distinctions were made between physicians from the German-, French-, Italianand Rhaetoroman-speaking regions. In this issue of Acta Paediatrica, Hendriks et al. (5) report the results of a telephone survey conducted in Switzerland in 2013 that covered the German-, Frenchand Italian-speaking regions, excluding only the Rhaetoroman areas in the east of the country. In contrast to the EURONIC study, they surveyed regular citizens rather than physicians and asked them for their attitudes about end-oflife decisions. The vast majority of the 1210 respondents, almost 78%, showed a strong preference for shared decision-making, but this percentage was lower in respondents from Italian-speaking regions (66%) than those from German-speaking (78%) and French-speaking (80%) regions. In cases where the healthcare professionals and the parents disagreed, almost 70% of German-speaking respondents said parents should have the final word, as opposed to respondents from French-speaking (51%) and Italian-speaking (54%) regions. The idea of giving decisional authority to a clinical ethics committee was almost unanimously rejected. When asked whether or not all possible means should be employed to ensure the survival of a preterm infant, irrespective of the assumed quality of life, respondents were equally divided. In a multivariate regression model, the preference to employ all possible means was most strongly associated with low levels of education, followed by residing outside the French-speaking part of Switzerland, being religious and being female. Hendriks et al. (5) emphasised the differences between respondents from the German-, Frenchand Italian-speaking regions, which in part mirror many of the attitudes expressed by neonatologists in the neighbouring countries in the EURONIC study. The authors refrained from commenting on the strong association between low levels of education and a pro-life stance. While no difference pertaining to this issue emerged between respondents with medium and high levels of education, respondents with a low level of education were more likely to uphold prolonging life without regard to the long-term quality of life. The percentage of respondents with a low level of education was only slightly above 7% and no data were provided about the percentage of people with a low level of education in the Swiss general population, defined according to criteria used in the study. However, it is quite likely that less welleducated, and therefore probably poorer, people were underrepresented in the sample. The survey byHendriks et al. (5) confirmed the association between the personal importance of religion and a preference