‘Ok, stranger fetus-baby: I love you’ The ethics of life and death decisions at the border of viability

Abstract

Advances in neonatal medicine have allowed us to rescue extremely preterm infants. However, both long-term vulnerability and the burden of treatment in the neonatal period increase with decreasing gestational age. Some of the most immature babies will die from complications after weeks or months of intensive care, and some will survive with major problems that will affect them for the rest of their lives. In the first weeks after birth we cannot know which infants will survive to a good life. This raises questions about the justification of life support when a baby is born at the limit of viability, and has led to a so-called ‘grey zone’, where professionals are unsure whether provision of life support is in the child's best interest. Who should make such decision for the individual infant? Neonatologists have experience in treating premature babies, they have an overview of different treatment options, and are used to making decisions. However, it is the baby's parents who, together with the baby, must live with the consequences. When professionals are unsure of what is good and right, one can argue that the infant’s parents should be enabled to make the decision. The aim of this project was to shed light on the ethical premises for decision-making at the border of viability. Our working hypothesis was that it is ethically sound for parents to make the decision of whether to provide life support or opt for palliative care when their baby is born in an established grey zone. We conducted focus group interviews with the different groups of clinicians dealing with life and death decisions throughout pregnancy and the neonatal period. Parents with different experiences after extremely premature birth, who had taken part in discussions about treatment choices before birth, were interviewed individually or as a couple. Both clinicians (paper 1) and parents (paper 2) presented objections to the hypothesis that parents should own life and death decisions for their infant at the limit of viability. Several clinicians expressed that the parental role implies fighting for your child, and parents in this situation cannot be expected to have the knowledge, the emotional stability or enough time to be in a position to make a balanced decision. They therefore expressed that clinicians should take the parents' views into account, and shield the parents from decisional responsibility. Several of the parents described an ‘instinct of saving’, and expressed that clinicians should protect the infants against the parental push for treatment. Parenthood is founded on unconditional love, which can come into conflict with 'responsible parenting', where different considerations ought to be weighed and balanced. Shared decision-making has emerged as a golden mean. Instead of seeing autonomy as formal self-determination where the parents have to make the choice all by themselves, autonomy is understood as empowerment, where parents and clinicians stand in the decision together. In paper 3, we present a radical proposal to support shared decision making when periviable birth occurs suddenly. In paper 4, we take a closer look at challenges of autonomy when an immature but potentially viable fetus is threatened in the mother's womb. In the thesis, I argue that it is ethically sound to give parents the opportunity to participate in decisions that will affect the rest of their lives when medical knowledge is insufficient to determine what is right and good. With good guidance from clinicians and time for reflection, parents facing life and death situations at the border of viability can be enabled to participate in these existential decisions.