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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.

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.

In ethical debate the questions often matter more than the answers. By raising questions about the anomalies in clinical practice concerning the moral status of the fetus, Boyle et al are contributing to the debate. There can be no starker reminder of the legal anomaly around fetal/infant rights than the hospital which deals simultaneously with abortions and intensive care of neonates. In the course of my own clinical practice I have recoiled from the horror of late abortions being whisked to the neonatal intensive care unit (NICU), and struggled with the ethical complexities of decision making for infants born at the edge of viability. But many years of detailed researching of the lived experiences of both staff and parents in relation to limitation of treatment,1,2 lead me to the conclusion that to focus discussion on fetal/infant rights is unhelpful. Theoretically the issues may well be conceptualised in this way, but the reality is very different. It is true that a mother has the right to request termination of her pregnancy at a stage where there is at least some possibility of a viable fetus (although in practice this rarely happens). It is also true that the rights of the fetus may only be realised once it has passed through the birth canal and established itself as a separate individual. A sharp divide at 24 weeks seems illogical, and indeed the whole notion of viability is something of a legal fiction. But in reality things are not as confrontational or as irreconcilable as this paper seems to suggest. Viewed from the perspective of the doctors, nurses, and parents at the coalface of NICU, talk of the child’s rights and interests suddenly superseding those of the parents is a distortion; and a picture of arbitrary conflicting reactions on the two …

Dilemmas about resuscitation and life-prolonging treatment for severely compromised infants have become increasingly complex as skills in neonatal care have developed. Quality of life and resource issues necessarily influence management. Our Institute of Medical Ethics working party, on whose behalf this paper is written, recognises that the ultimate responsibility for the final decision rests with the doctor in clinical charge of the infant. However, we advocate a team approach to decision-making, emphasising the important role of parents and nurses in the process. Assessing the relative burdens and benefits can be troubling, but doctors and parents need to retain a measure of discretion; legislation which would determine action in all cases is inappropriate. Caution should be exercised in involving committees in decision-making and, where they exist, their remit should remain to advise rather than to decide. Support for families who bear the consequences of their decisions is often inadequate, and facilitating access to such services is part of the wider responsibilities of the intensive care team. The authors believe that allowing death by withholding or withdrawing treatment is legitimate, where those closely involved in the care of the infant together deem the burdens to be unacceptable without compensating benefits for the infant. As part of the process accurate and careful recording is essential.

Over recent years in the UK there has been increasing emphasis placed on children taking responsibility for what happens to them. This American publication offers a refreshingly different view of parental and family autonomy and advocates a model of constrained parental autonomy. Ross argues that giving children rights equivalent to those of adults is “to deny them the protection they need” and render them “even more vulnerable than they presently are”. Her thesis is that whilst children should be included in the decision making process, parents should be responsible for …