Objective: To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age < 28 weeks).
Design: Hermeneutically oriented qualitative research design with in-depth interviews.
Setting: Level III NICU in Switzerland.
Participants: Purposive sample of seven couples, five mothers, and one father (20 parents).
Methods: Qualitative content analysis was used to categorize and interpret themes from parents' narratives.
Results: Parents described factors that affected the decision-making process in satisfactory or unsatisfactory ways. Transparent information, empathy, and honesty enhanced communication between parents and the health care team. Lack of transparent information and continuous support decreased satisfaction. The level of involvement in decisions differed by setting. Most parents made decisions regarding lung maturation and/or initiation of care in the delivery room. Parent participation in the NICU was experienced differently. Contrary to the hospital's ethical model, few parents recalled being involved in the decision-making process. Some parents experienced a dissociative state of mind that hindered their involvement, whereas others felt actively involved.
Conclusions: Our results suggest the need for careful and continuous professional evaluation of parents' wishes about involvement in the decision-making process, along with descriptions of medical facts and treatment options. A lack of attentive listening and dialogue may cause paternalistic decision trajectories.