End-of-Life Decision Making for Parents of Extremely Preterm Infants Q4 Manya J. Hendriks and Andrea Abraham ABSTRACT 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. JOGNN, -, -–-; 2017. http://dx.doi.org/10.1016/j.jogn.2017.06.006 Accepted June 2017 T he birth of an extremely preterm infant (gestational age < 28 weeks) often comes unexpectedly. Therefore, decisions must often be made under circumstances that can be emotionally stressful or morally burdensome for parents and/or health care professionals (HCPs; Provenzi et al., 2016). Because neonates born at the borderline of viability have a wide range of outcomes, it is hard to predict before or after birth whether they will die or survive with or without impairment. Prognostic uncertainty makes decisions about life-saving treatment particularly complex (Leuthner, 2014). Over the years, different decision-making appr- oaches have been developed to guide parents through the uncertain context of prematurity. In the past, HCPs considered it their professional prerogative to make decisions about initiating or withholding intensive care treatment. This concept is known as paternalism. In recent decades, however, the focus of decision making has shifted to include concepts such as informed decision making, informed shared decision making, partnership, patient involvement, patient- centered care, and evidence-based patient choice (Moumjid, Gafni, Bremond, & Carrere, 2007). Currently, most guidelines and policies advocate shared decision making and promote parental involvement before and after birth. They are based on the premise that decision making should be a collaborative venture between neonatal HCPs and parents (American College of Obstetricians and Gynecologists et al., 2015). In fact, it has been shown that parents want to participate in life-support decisions about their infants’ care (Moro et al., 2011; Provenzi et al., 2016; Weiss, Barg, Cook, Black, & Joffe, 2016). Moreover, parental involvement in combination with compassionate communication, consistent information, and support from HCPs contributed to parental satisfaction with decisions (Brosig, Pierucci, Kupst, & Leuthner, 2007; Obeidat, Bond, & Callister, 2009). Hence, the relation- ships and communications between HCPs and The authors report no con- flict of interest or relevant financial relationships. Correspondence Manya J. Hendriks, MSc, Department of Neonatology, Perinatal Center, University Hospital Zurich, University of Zurich, Frauenklinikstrasse 10, Zurich CH-8091, Switzerland. manya.hendriks@usz.ch Keywords end-of-life extremely preterm infants parental involvement qualitative research shared decision making Manya J. Hendriks, MSc, is a research associate in the Department of Neonatology, Perinatal Center, University Hospital Zurich, University of Zurich, Zurich, Switzerland, and a PhD candidate in the Institute of Biomedical Ethics and History of Medicine, University of Zurich, Zurich, Switzerland. (Continued) ª 2017 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved. http://jognn.org 1 R ESEARCH 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 100 101 102 103 104 105 106 107 108 109 110 111 112 FLA 5.5.0 DTD  JOGN255_proof  24 July 2017  3:59 pm  ce