Dealing with doubt: Making decisions in a neonatal ward in The Netherlands

Abstract

Neonatology provides intensive care for newborns. Most of the patients in a neonatal ward have been born prematurely. In this article decision-making concerning children born very prematurely (at fewer than 28 weeks, 12 or more weeks too early) is described. Three phases of daily practice are discussed: birth, treatment and referral or death. The article is based on ethnographic research conducted in the neonatal ward of the Amsterdam University Hospital. This ward's policy is to refrain from starting life-prolonging treatment for some children. This is done when staff members consider their chances too small. When life-prolonging treatment is started it is done provisionally and with trial-like features. Staff members want to judge the acceptability of the child's future quality of life. If they think it is unacceptable, they want to stop life-prolonging treatment. Parents play an important role in decision-making because their consent is needed for such decisions. More importantly, staff members need parental input about what, for that particular child and those parents, is seen as a good, bad or acceptable quality of future life. Decision-making shows a specific characteristic. Parents are informed about their child in sober terms and because they have considerable opportunities to influence decision-making it is argued that the processes taking place in the ward reflect the Dutch ‘negotiation culture’.