Do neonatologists limit parental decision-making authority? A Canadian perspective Susan G. Albersheim ⁎, Pascal M. Lavoie, Yaron D. Keidar Division of Neonatology, Children's and Women's Hospitals of British Columbia and University of British Columbia, Vancouver, BC, Canada abstract article info Article history: Received 8 December 2009 Received in revised form 3 June 2010 Accepted 8 September 2010 Keywords: Decision-making Threshold of viability Extremely low birth weight Parental authority Background: According to the principles of family-centered care, fully informed parents and health care professionals are partners in the care of sick neonates. Aim: The aim of this study was to assess the attitudes of Canadian neonatologists towards the authority of parents to make life-and-death decisions for their babies. Study design: We interviewed 121 (74%) of the 164 practicing neonatologists in Canada (June 2004–March 2005), using scripted open-ended questions and common clinical scenarios. Data analysis employed interpretive description methodology. Main outcome measure: The main outcome measure was the intention of neonatologists to limit parental life- and-death decision-making authority, when they disagree with parental decisions. Results: Neonatologists' self-rated respect for parental decision-making authority was 8/10. Most neonatologists thought that parents should be either primary decision-makers or part of the decision-making team. Fifty-six percent of neonatologists would limit parental decision-making authority if the parents' decision is not in the baby's “best interest”. In response to common neonatal severe illness scenarios, up to 18% of neonatologists said they would limit parental decision-making, even if the chance of intact survival is very poor. For clinical scenarios with equally poor long-term outcomes, neonatologists were more likely to comply with parental wishes early in the life of a baby, particularly with documented brain injury. Conclusions: Canadian neonatologists espouse high regard for parental decision-making authority, but are prepared to limit parental authority if the parents' decision is not thought to be in the baby's best interest. Although neonatologists advise parents that treatment can be started at birth, and stopped later, this was only for early severe brain injury. © 2010 Elsevier Ireland Ltd. All rights reserved. 1. Introduction Dilemmas and uncertainties surrounding the birth of an extremely premature baby, particularly below 26 weeks' gestation, cause consider- able distress for parents and health care providers. At this threshold of viability, decisions are complicated by difficulties in accurately estimating the risk of serious long-term neurodevelopmental disability in babies who may have a reduced chance of ultimate survival [1,2]. When confronted with the anguish of this prognostic uncertainty, some parents seek “full intensive care” (IC) despite a low chance of survival, while others focus more on short-term and long-term severe morbidity. Parents try, under these very difficult circumstances, to be involved in decision-making and to make the best decision for their baby, aware that they, and the baby will live with the consequences of these decisions; whatever the outcome [3]. In pediatrics the child's “best interest” governs treatment decisions [4]. Some authors have proposed that the medical decisions of clinicians ought to override parental estimations of best interest, if there is a chance of a reasonable outcome [5–7]. Some studies suggest that neonatologists often make treatment decisions before discus- sions with parents, then “work towards” parental assent [8,9]. In order to assist clinicians in decision-making at the threshold of viability, several national pediatric organizations have developed guidelines [10–14]. For example, the Canadian Paediatric Society (CPS) guide- lines state that: • neonates born before 23 weeks' gestation are generally not viable and therefore should not routinely be resuscitated at birth; • outcomes for neonates born at 23 to 24 completed weeks' gestation vary greatly, and the benefits and burdens of IC should be carefully considered; • most neonates born at 25 to 26 weeks' gestation survive without severe disability and therefore IC should routinely be provided. The CPS also recommends that treatment decisions for babies born at 22 to 26 weeks' gestation “be tailored to the infant and family, and should involve fully informed parents” [10]. Early Human Development 86 (2010) 801–805 Abbreviations: CPS, Canadian Paediatric Society; NICU, Neonatal Intensive Care Unit; IVH, Intraventricular hemorrhage; BPD, Bronchopulmonary dysplasia; IC, Intensive care; ANOVA, Analysis of variance. ⁎ Corresponding author. Division of Neonatology, Rm 1R47, BC Children's and Women's Hospitals, 4480 Oak St, Vancouver, BC V6H 3V4, Canada. Tel.: +1 604 875 2135; fax: +1 604 875 3106. E-mail address: salbersheim@cw.bc.ca (S.G. Albersheim). 0378-3782/$ – see front matter © 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.earlhumdev.2010.09.007 Contents lists available at ScienceDirect Early Human Development journal homepage: www.elsevier.com/locate/earlhumdev