Ethical decision‐making in neonatology – a Scandinavian perspective

Aspects on end-of-life, death and dying in neonatal intensive care units in Latin America are presented in this issue by Fajardo et al. (1). The article is based on reports of 100 deaths from eight Latin American NICUs, and only 19 of these infants born before weeks 27 and 35 were full term. The authors suppose that many live-born extremely preterm infants were never referred to a NICU. The authors presume that some important differences exist in attitudes (ethical decisions?) between Latin America and United States and Europe. Life support was virtually never withdrawn, and decisions about withholding life-sustaining treatment less often included the parents’ views. Sedatives and narcotics were seldom used when caring for dying infants. Decisions not to institute life support occurred, mainly in infants with congenital malformations, but this subject was not discussed further, which is surprising in the light of the ongoing international debate. The literature on ethical decision-making in neonatal care is extensive. The most far-reaching study is probably still Euronic, based on the enquiries to NICUs in several European countries including Sweden (Cuttini et al., 2–5), discussing practices and attitudes among staff, parental participation but also legislation and official guidelines (6). Much valuable information can be found in these reports, although the results were published some years ago. The study showed that differences did exist between countries in Europe, but also within countries, for example, regarding parents’ role and the withdrawing of life support. I will concentrate on the situation in Scandinavia, mainly Sweden, in this commentary. WITHDRAWING LIFE-SUSTAINING TREATMENT This is not rare in Scandinavian settings, for example, when the treatment is considered futile or not in the best interest of the patient. Most neonatologists in Scandinavia accept withdrawing treatment in these situations, as does also the Ethics Working Group of the Confederation of European Specialists in Paediatrics (CESP, 7). There are exceptions to this view, however. The question of withdrawing or sustaining treatment life support in the hopeless cases is probably always discussed with the parents in Scandinavia. Use of sedatives and narcotics to decrease suffering when withdrawing treatment is well accepted and regarded as being within the best interest of the infants, even in situations where life can be shortened by the medication, an opinion which is also given by the by the Ethics Working Group of CESP (7).