Ethical framework for shared decision making in the neonatal intensive care unit: Communicative ethics

1Children’s Hospital of Eastern Ontario, Pediatrics, Division of Neonatology; 2The Ottawa Hospital, Obstetrics and Gynecology, Division of Newborn Care, Ottawa, Ontario; 3Universite du Quebec en Abitibi-Temiscamingue, Unite d’enseignement et de Recherche en Sciences de la Sante, Rouyn-Noranda, Quebec Correspondence: Dr Thierry Daboval, Children’s Hospital of Eastern Ontario, Pediatrics, Division of Neonatology, 401 Smyth Road, Ottawa, Ontario K1H 8L1. Telephone 613-737-7600 ext 2415, e-mail tdaboval@cheo.on.ca Accepted for publication March 15, 2014 “I did not want my baby to suffer, nor to run the risk of having cerebral palsy”. Clinicians working in neonatology have all heard about parents who say that they would not have considered aggressive resuscitation if someone had explained to them the ‘truth’ about the risks to their premature infant’s long-term outcome. These parents may well be saying that they were not satisfied with their participation in the determination of their infant’s ‘best interest’. The newborn’s best interest has always been central to decision making, but there is no single, unequivocal definition of the ‘best interest’ of a seriously compromised newborn. Traditionally, in justifying ethically challenging decisions, neonatologists often quote the Principles of Bioethics, which are commonly promoted in medical literature and medical education but often limited to four main principles (1). These four principles include: beneficence, or concern for well-being; nonmaleficence, or “do no harm”; autonomy, or respect for the right to make one’s own decisions and, in the context of neonatology, the respect for parental decision-making authority; and justice as fairness, or equals ought to be treated equitably (2). The majority of neonatologists believe that the determination of the best interest of the infant is guided by beneficence and nonmaleficence, which is based on medical data regarding probabilities of survival and morbidities (3). Beyond the purview of such evidence-based rationale is the often-overlooked fact that parents and neonatologists each have their own personal experience, value system and interpretation of the medical data that shape their own moral judgments regarding what is in the best interest of the infant (4). They also do not have equal positions of power in this context. As demonstrated by Anspach (5), parents faced with “the knowledgeable physician’s” strong opinion regarding the medical best interest of their newborn may not share their thoughts and worries, but rather feel helpless, unheard, fearful and unsupported. Such parental reactions could, in turn, cause the medical team to misinterpret the apparently reserved or distant parents as not wishing to participate (5,6). As often happens in seemingly conflictual situations, rather than true dialogue, assumptions are made about the intent of the other party rather than exploring each party’s interpretation of the facts and the resulting fears, desires and feelings that are elicited (7). The lack of meaningful dialogue may result in a loss of the parents’ opportunity to participate in these important decisions. Seeking a voice for parents and families, and ethically justifiable decisions for infants, Helen Harrison wrote a seminal article about family-centred care in neonatology (8). Since its publication in 1993, neonatal intensive care units across North America have gradually introduced clinical practices in accordance with family-centred care principles, and shared decision making is now being promoted by North American professional societies (9,10). Nevertheless, paternalistic behaviour remained strongly anchored within the neonatologist community, as Bergeron (6) found in her 2008 study of the current Canadian Paediatric Society (CPS) position statement, ‘Treatment decisions regarding infants, children and adolescents’, and of research on decision making in the neonatal intensive care unit. She concluded that the ‘shared’ component of decision making as well as consent from parents are sought only when the medical team considers that there is sufficient uncertainty in the outcomes of infants based on medical facts. When medical data support a certain treatment plan, from intensive to palliative care, the circumstances, justification and details of the plan, as contained in ‘gestational age-based neonatal guidelines’, are put into action by the neonatologist, purportedly in the best interest of the newborn (6). Although clinical practices are evolving toward shared decision making, Haward (3) found in 2011 that a significant proportion of neonatologists still believe they provide the ‘best’ answers in the quest for the best interest of sick infants, not recognizing the fact that the interpretation of research data predicting prognosis may vary even among themselves. The recommendation, albeit weak, of the latest CPS position statement concerning extremely preterm birth (9) (that “active treatment is appropriate except when there are significant additional risk factors” for most infants of 25 weeks’ gestational age) could still adversely influence the neonatologist’s attitudes and communication with parents. Our own recent qualitative study observed a resident presenting only the full-care option to parents of a baby at risk of being born at 26 weeks’ gestational age. The resident believed that, according to the guidelines and the instruction of his supervisors regarding the infant’s best interest, parents had no other options than to agree to resuscitation (11). Neonatologists feeling bound to offer only therapies with curative intent, especially concerning infants of older gestational age, may share information with parents in such a way as to frame the message in positive terms regarding survival so that parents will be guided to choose resuscitation as being in the infant’s best interest, as the results of the Haward et al (12) study suggest. Such communication styles, restricting parents’ opportunity to participate in decision making, are in contradiction to shared decision making and family-centred care. The traditional Principles of Bioethics and the latest CPS position statement do not describe how to ethically communicate to assure that parents have the opportunity to participate to their satisfaction in the important decisions regarding the best interest of their infant. Commentary

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