Critical care decisions in fetal and neonatal medicine: ethical issues
Conclusions and recommendations
Introduction
9.1 Scientific and medical developments in fetal and neonatal medicine have enabled children who previously would have died to survive and lead healthy and fulfilling lives. These same developments have also created ethical, social and legal dilemmas for those families and health professionals who are faced with making complex and emotionally demanding decisions that may have lifelong consequences. In our deliberations, we have found that the difficult questions that arise in fetal and neonatal medicine concern a number of recurring ethical issues. These include the nature and value of human life at different stages of development, distinctions between the active ending of life and death resulting from withholding or withdrawing treatment, and balancing the interests of affected children, their families and the needs of other social groups (paragraphs 2.28–2.30). All too often there is substantial disagreement about these issues and how they should be resolved. Within the Working Party, members themselves hold diverse opinions on these matters. Thus one of our challenges has been to consider, given that people hold morally diverse views, how we can arrive at sensible judgements on which to base public policy.
9.2 The title of our Report, Critical Care Decisions in Fetal and Neonatal Medicinereflects our central concern with decision making. We endorse wholly the ideal of a ‘partnership of care’ advanced by the RCPCH and BAPM (paragraph 2.48). In some cases, it may be that the essence of the question to be decided is what oughtto be done. In many instances, there will not be an answer that is clearly right or wrong. Reasonable people could disagree. In this Report we often focus on not so much what is the ‘right’ decision, but on howa decision should be arrived at and who should make the decision. To do so, we need to know how such decisions are currently made. The fetus and the newborn baby cannot speak for themselves. Who speaks for them, and how their interests are identified and protected, are crucial questions for us.
9.3 All decisions, whoever makes them and however they are made, depend on adequate and accessible information. Insufficient or contradictory information impairs the decision-making process. The quality of the information and data available to professionals, families and policy makers in this challenging field is frequently inadequate or incomplete. This means that uncertainty affects many of the critical decisions that may arise in both fetal and neonatal medicine. One example is imprecision in identifying the long-term outcome for a baby in poor health. While neonatologists can offer families some information about the statistical probabilities of their extremely premature or very ill baby surviving, and the likelihood that he or she will be affected by some disability, they are limited in what they can predict for that particular baby. The paucity of information hinders doctors from answering the question that all parents ask, which is ‘what will happen to mybaby?’.
9.4 Decisions in fetal and neonatal medicine such as whether to intervene to prolong life, or to withhold or withdraw certain forms of treatment arouse strong emotions. Emotional influences upon decision making must be recognised and respected both in clinical decisions about individual babies, and in national policy making. Strong emotional reactions are also aroused by questions about a fetus’ claim to rights, and perceptions of disability and disabled people. Such reactions are not confined to people with direct experience of these dilemmas. Personal experience, professional and social background, religious and cultural perspectives all play a role in forming people’s views and cannot be ignored. The Working Party has been struck by how practice varies in resolving similar dilemmas in neonatal medicine in different hospitals in the UK, and also between the UK and other countries. We begin our final discussion by presenting our conclusions and recommendations on fetal medicine, the borderline of viability, and decisions about other babies in intensive care. We then turn to decision making, determining best interests and the resolution of disagreement. After providing our views on economic considerations and the lifelong needs of children with disabilities, we conclude by identifying needs for monitoring and research, information, education and training.