Two new documents from the Committee on Bioethics of the American Academy of Pediatrics expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance of informed and (...) voluntary parental involvement in pediatric decision making. This article provides a more expansive account of the value of parental permission. In particular, we suggest that an expansive role for parental permission may reveal facts and values relevant to their child's treatment, encourage resistance to suboptimal default practices, improve adherence to treatment, nurture children's autonomy, and promote the interests of other family members. (shrink)

Clinical ethics records offer bioethics researchers a rich source of cases that clinicians have identified as ethically complex. In this paper, we suggest that clinical ethics records can be used to point to types of cases that lack attention in the current bioethics literature, identifying new areas in need of more detailed bioethical work. We conducted an analysis of the clinical ethics records of one paediatric hospital in Australia, focusing specifically on conflicts between parents and health professionals about a child’s (...) medical treatment. We identified, analysed, and compared cases of this type from the clinical ethics records with cases of this type discussed in bioethics journals. While the cases from journals tended to describe situations involving imminent risk to the child’s life, a significant proportion of the clinical ethics records cases involved different stakes for the child involved. These included distress, poorer functional outcome, poorer psychosocial outcome, or increased risk of surgical complications. Our analysis suggests that one type of case that warrants more detailed ethics research is parental refusal of recommended treatment, where the refusal does not endanger the child’s life but rather some other aspect of the child’s well-being. (shrink)

Active ending of the life of a newborn baby is a crime. Yet its clandestine practise is a reality in several European countries. In this paper, we defend the necessity to institute a proper legal frame for what we define as active neonatal euthanasia. The only legal attempt so far, the Dutch Groningen protocol, is not satisfactory. We critically analyse this protocol, as well as several other clinical practises and philosophical stances. Furthermore, we have tried to integrate our opinions as (...) clinicians into a law project, with the purpose of pinpointing several issues, specific of perinatality that should be addressed by such a law. In conclusion, we argue that the legalisation of neonatal euthanasia under exceptional circumstances is the only way to avoid all the “well-intentioned” malpractices associated with ending life at the very dawn of it. (shrink)

The Groningen Protocol, introduced in the Netherlands in 2005 and accompanied by revised guidelines published in a report commissioned by the Royal Dutch Medical Association in 2014, specifies conditions under which the lives of severely ill newborns may be deliberately ended. Its publication came four years after the Netherlands became the first nation to legalize the voluntary active euthanasia of adults, and the Netherlands remains the only country to offer a pathway to protecting physicians who might engage in deliberately ending (...) the life of a newborn. In this paper, I offer two lines of argument. The first is a positive argument for the Protocol, grounded in the good of the newborn as unanimously determined by those in a position to determine it. The second addresses the widely shared belief that the killing of newborns is morally prohibited, where I offer two arguments—one grounded in the fact that the kinds of cases the Protocol is meant to govern are very rare and highly unusual, and the other focused more broadly on the role of pre-theoretical beliefs in moral reasoning—meant to undermine the strong role that the critic of the Protocol affords this belief. I argue that, given this second line of argument, the beliefs underlying my positive argument for the Protocol are in fact more secure than the widely shared belief underlying the critic’s position. (shrink)

The Groningen Protocol aims at providing guidance in end-of-life decision-making for severely impaired newborns. Since its publication in 2005 many bioethicists and health care professionals have written articles in response. However, only very little is known about the opinion among the general population on this subject. The aim of this study was to present the general attitude towards neonatal euthanasia (NE) among the Austrian population and the factors associated with the respondents’ opinion.