Deciding to resuscitate extremely premature babies: how do parents and neonatologists engage in the decision?

Abstract

Parents at risk of delivering a baby at the threshold of viability are faced with a critical decision. When a child is born between 23 and 25 weeks of gestation, parents are asked to decide whether or not to resuscitate their child. In essence, they are faced with a choice between life and death. We conducted a qualitative study to explore how parents and neonatologists engage in decision-making in a context of imminent and unplanned delivery at the threshold of viability. Twelve parents and attending neonatologists in a specialized tertiary care centre in Montreal, Canada were separately interviewed immediately following neonatal consultation. Results highlight how neonatologists and parents engage in decision making from different standpoints: while neonatologists focus on the management of the unborn baby, parents have yet to fully conceptualize their infant as a distinct entity since they are in a process of grieving their pregnancy and their parenthood project. Moreover, in their attempt to ensure an informed decision, neonatologists adopt either of two models through provision of the most up-to-date and objective information available: "remaining as neutral as possible to allow parents to make their own decision", or, "formulating a proposal to which parents can choose or not to assent". Overall, if the provided information fits parents' expectations, they tend to feel confident with their decision. However, if it does not take their experience into account, their decision is experienced as a solitary process. Parents express the need to receive more than just factual information from neonatologists. They also require support and engagement from caregivers to manage the uncertainty. This brings into question the traditional concept of neutral informed consent and suggests the necessity of a shared decision-making model to ensure that the decision to resuscitate extremely premature babies, at the limits of viability, becomes a truly ethical task.