Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses
infant mortality; medical decision making; nurse attitude; physician attitude; adult; article; assisted ventilation; controlled study; enteric feeding; female; hospital policy; human; legal aspect; male; medical practice; neonatal intensive care unit; neonatal nurse; neonatologist; patient participation; prematurity; questionnaire; religion; Switzerland; terminal care; work experience
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. Methods: All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored. Results: Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given. Conclusions: Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.Copyright © 2018 The Author(s).
Bucher HU; Klein SD; Hendriks MJ; Baumann-Holzle R; Berger TM; Streuli JC; Fauchere JC; Philipp M; Roland N; Renate I; Mathias N; Liliane S; Brigitte S; Kai R; Riccardo P; Matthias R; Magali C; Ulrike S; Gudrun J; Ruth D; Jean-Claude F; Barbara D
BMC Pediatrics
2018
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<a href="http://doi.org/10.1186/s12887-018-1040-z" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1040-z</a>
Implementation of Pediatric Palliative Care (PPC) in a Neonatal Intensive Care Unit (NICU) in St.Gallen
decision making; death; newborn; Switzerland; trisomy 18; major clinical study; newborn period; pregnancy; neonatal intensive care unit; conference abstract; human; child; female; male; palliative therapy; drug withdrawal; brain hemorrhage
Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification D) of sanaCERT Suisse certification. Until presently, the OKS is the only children's hospital in Switzerland which is certified in PPC. Furthermore, our PPC team is a member of the Pediatric Palliative Care Network Switzerland (PPCNCH). In order to focus on neonates, the biggest group needing PPC, we decided to develop a special program for Neonatal Palliative Care (NPC). Background(s): According to epidemiologic data, 400-500 children between the age of 0 and 18 years are dying in Switzerland each year. It's known from the PELICAN study (Bergstrasser; Zimmermann et al., 2016), that about 50% of these children are dying in the first year of life, of which 40% in the neonatal period. Four out of five children are dying in an ICU, the majority of them after a decision-making process with the decision to withhold or withdraw further treatment. Apparently, the neonates represent an important group and therefore it is reasonable to concentrate on NPC in the NICU. Case presentation: We present three neonatal patients suffering from severe, life threatening conditions: one newborn with trisomy 18, one premature of 32 week of gestation with a large intracerebral hemorrhage and a neonate with a life threatening conditions. The presentations demonstrate the difficulties and challenges and illustrate the importance of the involved teams networking in decision making and implementing care for these patients and their families under particular circumstances. The circumstances of death and the definitions of withholding or withdrawing therapy will be explained. Furthermore, the different requirements, discussions and the resources available in these cases will be presented. This indicates the possible improvements and developments in that area. Conclusion(s): Neonates are an important group to consider in a PPC program. Considering that the neonatal period is a very special phase of life for the child and his/her family deserve particular consideration and structures in order to treat them adequately. Caring for a neonate and his family needing PPC is a challenging task for the family and the multiprofessional team. Clear structures and allocated resources are very important to fulfill this need in a meaningful way.
Gudrun J; Susanne A
Swiss Medical Weekly
2017