In this article I argue for an interpretive approach to bioethics with critically ill children. I begin by highlighting the dominant Anglo-American bioethical framework that defines standards for ethical care in critically ill children and then outline a critique of this framework. Drawing predominantly on the ideas of Charles Taylor, Michael Walzer and Richard Zaner, I call for a reconception of bioethics and propose an interpretive ‘thick’ framework that is centred on culture and context. Finally, I illustrate this interpretive approach (...) through a comparative study of two cases in pediatric intensive care: the narratives of Marc and Larry. These case studies reveal that ethical dilemmas in pediatric critical care can be traced to relational tensions over respect, trust and power rooted in the disparity of moral horizons among the persons involved. (shrink)

The ethical issues around decision making on behalf of infants have been illuminated by two empirical research studies carried out in Scotland. In-depth interviews with 176 medical and nursing staff and with 108 parents of babies for whom there was discussion of treatment withholding/withdrawal, generated a wealth of data on both the decision making process and the management of cases. Both staff and parents believe that parents should be involved in treatment limitation decisions on behalf of their babies. However, whilst (...) many doctors and nurses consider the ultimate responsibility too great for families to carry, the majority of parents wish to be the final arbiters. We offer explanations for the differences in perception found in the two groups. The results of these empirical studies provide both aids to ethical reflection and guidance for clinicians dealing with these vulnerable families. They demonstrate the value of empirical data in the philosophical debate. (shrink)

Representatives from eight European countries compared the legal, ethical and professional settings within which decision making for neonates takes place. When it comes to limiting treatment there is general agreement across all countries that overly aggressive treatment is to be discouraged. Nevertheless, strong emphasis has been placed on the need for compassionate care even where cure is not possible. Where a child will die irrespective of medical intervention, there is widespread acceptance of the practice of limiting aggressive treatment or alleviating (...) suffering even if death may be hastened as a result. Where the infant could be saved but the future outlook is bleak there is more debate, but only two countries have tested the courts with such cases. When it comes to the active intentional ending of life, the legal position is standard across Europe; it is prohibited. However, recognising those intractable situations where death may be lingering and unpleasant, Dutch paediatricians have reported that they do sometimes assist babies to die with parental consent. Two cases have been tried through the courts and recent official recommendations have set out standards by which such actions may be assessed. (shrink)