Critical care decisions in fetal and neonatal medicine: ethical issues
Executive summary
1 Before the 1960s, few conditions could be diagnosed in pregnancy and there was a lack of treatments that could be offered to babies who were born very early or who were seriously ill. Most of these babies would die. Since then, major improvements in fetal diagnosis and medical care have been increasingly successful in saving the lives of extremely premature babies and in offering more hope of recovery to those born later who have health problems. Many of these babies do well but some will have a condition that limits their lifespan to a few weeks or months, with little prospect of effective treatment. Others may have major abnormalities, chronic illness or the potential for serious disability. Families and health professionals are sometimes faced with having to make complex and emotionally demanding decisions that may affect whether a baby lives or dies. The Nuffield Council on Bioethics therefore established a Working Party to provide advice on the ethical, social and legal issues that arise in critical care decision making in fetal and neonatal medicine.
2 The nature and complexities of decision making in critical care are a central focus of this Report. When a baby survives there may be lifelong consequences for the baby and his or her family. Decisions are made on behalf of fetuses and newborn babies who cannot speak for themselves. It is therefore crucial to examine who should make decisions on behalf of a fetus or a baby, and how his or her interests can be identified and protected. Although the circumstances of each case are different and intensely personal, uncertainty of prognosis is common. All decisions, whoever makes them and however they are made, depend on adequate and accessible information.
3 The ethical framework in this Report addresses several recurring issues where an analysis of ethical concepts and arguments is crucially important (Chapter 2). These are the nature and value of human life at different stages of development; the role of best interests; the deliberate ending of life and the withholding or withdrawing of treatment; and the weight that should be accorded to economic and social considerations. Personal experience, professional and social background, religious and cultural perspectives all play a role in forming people’s views on these issues. All too often, there is substantial disagreement about ethical issues that arise in critical care and how they should be resolved. Within the Working Party, members themselves held diverse opinions on some of these matters.
4 The Report considers three clinical areas: fetal medicine (Chapter 4); the borderline of viability (babies born extremely prematurely, at or before the gestational age of 25 weeks, six days) (Chapter 5); and babies receiving intensive care (Chapter 6). In fetal medicine, despite improvements in diagnosis, the limited prospects for fetal treatment mean that critical care decisions frequently concern either the timing of delivery or termination of the pregnancy. For babies born at the borderline of viability, neonatologists are able to offer families general information about the statistical probabilities of survival and the likelihood of disability. However, doctors are frequently limited in what they are able to tell the parents about how their particular baby will fare. The Working Party considered whether there is a place for guidelines on the use of resuscitation, and the initiation of intensive care treatment, to help parents and healthcare professionals alike. The potential for further guidance to assist the determination of best interests was also considered. Once a baby is receiving intensive care, the primary ethical issue is often deciding whether it is in his or her best interests for life-sustaining treatment to continue or whether only pain relief or palliative care should be provided.
5 Chapter 7 describes the complex practical issues that may arise as babies with predicted disabilities enter childhood and early adulthood. The current legal framework within which critical care decision making operates is discussed in Chapter 8. Particular attention is given to different routes for the resolution of disagreement. Finally, the conclusions and recommendations of the Working Party are presented in Chapter 9. They are also summarised below.