Critical care decisions in fetal and neonatal medicine: ethical issues
Regulation and resolution
Regulation
37 Legislation designed exclusively to address decisions relating to newborn babies alone would not offer the clarity and predictability that might be its objective. The current legal principles centred on seeking agreement between parents and professionals as to the best interests of the baby are, in principle, appropriate and sufficient (paragraph 9.31).
38 Further to our conclusion that it would be unethical, the Working Party concluded that to end the life of newborn babies actively would be unacceptable in the UK. It would also be very difficult to devise sufficiently stringent limits for the circumstances in which it could be permissible (paragraph 9.22).
39 For over 30 years, there has been extensive theoretical and policy-related debate about the concept of children’s rights. The law, challenged by a potential conflict between the claims of the pregnant woman and the fetus, has, so far, declined to accord rights to the fetus. Once born, the newborn baby enjoys the same human rights to life and to appropriate medical care as any other person. In the view of the Working Party, there is no question over whether newborn babies have legal rights: there is no doubt that they do. The difficulty is interpreting and applying those rights when rights conflict.
Resolution
40 There are always likely to be cases where parents and doctors disagree about the care of a baby, for example where a parent holds that all measures must be taken to preserve life. The Working Party recommends that efforts should continue to be made to resolve disputes that may arise about the care of a baby through further discussion, initially within the neonatal unit. If disagreements remain, parents should routinely be offered access to a second medical opinion. The NHS should explore ways to ensure that all neonatal intensive care units have rapid access to a clinical ethics committee for advice. The best mechanisms for providing such advice need to be determined and implemented on the basis of equal accessibility for parents and all professionals involved in the health or social welfare of the child. Clinical ethics committees may sometimes be able to play a limited role in resolving disputed cases. Whether a decision is disputed or not, rapid support will be needed if clinical ethics committees are to play an effective role in this area of medicine. We propose that clinical ethics committees should appoint on-call facilitators for more active resolution of differences in critical care decision making before they become entrenched as a dispute (paragraphs 9.37–9.39).
41 There are potential advantages to using mediation processes in disputes about critical care decisions in neonatal medicine, for example when positions have become deeply entrenched. We recommend that the UK Departments of Health should examine the benefits that mediation may offer, with a view to setting up a pilot study to evaluate the possible merits for critical care decision making in neonatal medicine (paragraphs 8.56–8.62 and 9.39).
42 If all possible means of resolving any disagreement between the various parties has been exhausted, recourse to the courts will be necessary. There is a trend towards open hearings for disputes about the care of the newborn which is in keeping with a general trend towards more openness within the Family Division of the High Court. This has led to such disputes acquiring a much higher public profile. We note that as the Family Division moves towards more open hearings, measures will be put in place to protect the privacy of families and professionals if this is their preference. We endorse this plan (paragraph 9.40).