At the Beginning and the End: End of Life Decision-Making for Extremely Preterm Infants

Abstract

An extremely premature birth often comes unexpectedly to parents, which raises a series of difficult decisions regarding life-sustaining measures. The present thesis aims at providing more in-depth information on end-of-life decision-making for extreme preterm infants. In the general introduction I illustrate the background on neonatal intensive care for babies born extremely premature. This thesis is structured in three parts: a population survey, parental interviews and a theoretical reflection. In the first part, the societal attitudes with regard to withholding or withdrawing care of extreme preterm infants in Switzerland are explored. A number of 1210 participants completed the survey (response rate 24%). Our findings revealed that the Swiss population highly valued shared decision-making. The socio-cultural background of participants influenced attitudes toward end-of-life decision-making. In addition, participants’ self-rated solidarity was high towards extreme preterm infants who may develop disabilities. These findings contribute to discussions on standardizing highly specialized neonatal intensive care and on ethical aspects that underlie morally pluralistic societies. Moreover, the findings regarding solidarity have the potential to alleviate some pressure – regarding societal support and financial difficulties – on parents in the decision-making process. In the second part, the experiences of parents of extreme preterm infants who were born and died at a University Hospital in Switzerland were explored. Participants included 20 parents of 13 extremely preterm infants (seven couples, five mothers, and one father) and five health care professionals. The main findings showed difficulties with parental bonding in the neonatal intensive care unit (NICU) and different recollections regarding parental involvement in decision-making. The results suggest that professional support can contribute to parents’ perception of being a family, positively affecting the grieving process. It further illustrates the necessity of careful professional evaluation of parents’ wishes about involvement and clear descriptions of medical facts and treatment options. The third part, a theoretical reflection on policies that limit intensive care measures for babies at a certain gestational age is presented. The reasons for such policies are explored and the ethical justifications are questioned. It argues that such policies are unjust to premature babies and ought to be abolished. In their place, individualized treatment decisions for premature babies are proposed. Finally, this present thesis leads to some potential ideas for future practice and research in neonatal ethics. Six suggestions are presented: (1) share decisions to continue or discontinue life-sustaining interventions; (2) further institutionalize palliative and bereavement care in the NICU; (3) investigate how to manage divergent attitudes and values; (4) explore whether transparent counselling is warranted in withholding treatment; (5) investigate practices at the limit of viability and; (6) question thresholds in policies for decisions on resuscitation. In conclusion, although the beginning and the end of extremely premature babies are so close, we should support these infants and their families to make the decision that is right for the infant and his or her family.