Introduction: The birth of an extreme preterm infant often comes unexpectedly. Decisions, then, must often be made quickly and under circumstances that can be emotionally stressful for parents or morally burdensome for health care professionals. In the past decades, more emphasis has been placed on parental involvement in the decisionmaking, but a shared approach has remained understudied and difficult to implement in practice. Method(s): In order to explore parental attitudes and values in the end-of-life decision-making process, we conducted 13 qualitative semi-structured interviews with 20 parents. We recruited parents of extremely premature infants who were born alive and died in the delivery room or in the NICU at the University Hospital Zurich in the years 2013-2015. Result(s): Parents described factors that resulted in either a smooth or friction-laden decisional process. Some elements favored good communication between parents and the health care team, such as transparent information, empathy and honesty. Elements such as lacking of transparent information and lacking continuity of care discouraged good communication. Parents experienced the end-of-life decision-making process in divergent ways. Although most parents did consider to be involved in decision-making, they were nevertheless satisfied with the process. In contrast, few parents were involved in the decision-making. They appreciated and valued the possibility to take part in the decision, but they did not perceive the decision as an act of autonomy. Rather they felt it was part of their parental responsibility and a demanding act of love. Conclusion(s): The (non)involvement of parents in the end-of-life decision-making of their infant revealed that parental decision-making preferences are not homogenous, but highly case- and contextdependent. Health care professionals, who are closest to the parents, should aim to avoid either of these two opposites. Instead, they should enable and encourage parents' relationship with their child and create a space where parental preferences for involvement in end-of-life decisions can be assessed. Only then, it is considered a shared commitment.
Embodied Parenthood; End-of-life; Extreme Prematurity; Neonatal Intensive Care Unit; Palliative And Bereavement Care; Parental Bonding; Qualitative Content Analysis; Switzerland
Description
This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), they cannot act as primary caregivers. Instead, they depend on professional instructions for access and care. Embodied parenthood can be experienced only at the end-of-life, that is, during the dying trajectory and after the child's death. Professionally supporting parents during this compressed process (from assigned and distant to embodied parenthood) contributes fundamentally to their perception of being a family and supports their mourning. This calls for the further establishment of palliative and bereavement care concepts in neonatology.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Citation List Month
September 2017 List
URL Address
https://www.ncbi.nlm.nih.gov/pubmed/28751157
Notes
Using Smart Source Parsing Jul pii: S0884-2175( doi: 10.1016/j.jogn.2017.06.006