Do neonatologists limit parental decision-making authority? A Canadian perspective

Abstract

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.