Critical care decisions in fetal and neonatal medicine: ethical issues
Foreword
This Report examines decision making in areas of medicine where emotions cannot be detached from the process of resolving painful dilemmas about how best to care for a very ill baby. Nor should they be. For hundreds of years, doctors and midwives have sometimes had to decide whether to save a mother or her baby in childbirth, and whether to attempt to treat a baby delivered in a very poor condition. In reality, until recently, there was often little doctors could do. Scientific advances have meant that doctors can now intervene. In some cases, the question becomes: should they do so?
Medicine has developed rapidly in the past forty years. Screening in pregnancy enables doctors to identify an increasing number of the problems that can occur during fetal development. Today, expectant mothers can sometimes be treated in pregnancy to minimise the risks to their baby. Neonatal medicine has made immense progress and enables far more babies to survive premature birth, birth with severe abnormalities, or other health problems. More babies live and thrive. Many parents in the developed world now take delight in their family when, not long ago, they would have mourned the loss of a child. These self-same advances have, however, created the dilemmas in critical care decision making which are at the heart of this Report. Medicine offers choices. Often these are not easy choices, involving as they may do decisions that could determine whether a baby lives or dies. For parents, these choices are amongst the most profound decisions that will ever affect their lives. Parents nowadays play a central role in decision making about their children and it is no longer generally assumed, or asserted by the medical profession itself, that doctors know best. Increasingly, children are accorded rights. At the same time, public controversy about such matters as the moral status of the fetus, sanctity of life and access to scarce NHS resources has rarely been as vigorous.
The Working Party embarked on its task with some trepidation. We acknowledge that the constitution of the Working Party itself influenced not just our conclusions, but the way in which we conducted our deliberations. On a number of the key ethical questions in this Report, we take different views as individuals. Each of us was influenced by our own personal and professional history. We made every effort to examine the diversity of views in the wider debate. In chairing the Working Party, I have been immensely fortunate in my colleagues. They expressed their opinions forcefully, but always with grace and respect for others. We offer the Conclusions and Recommendations in this Report as our collective view about how to approach critical care decision making in fetal and neonatal medicine. We set out our reasoning in the earlier chapters and acknowledge that in some instances we reached a unanimous conclusion on the basis of different reasoning. We hope that our recommendations represent a balanced opinion for consideration by policy makers, and to assist families and health professionals.
Writing this Report has not been easy. Any difficulties that we have faced pale into insignificance compared with the heartbreaking choices that parents and professionals have to make in these areas of medicine. Many people have contributed to our Report, through our wider consultation, at fact-finding meetings, workshops, through peer review and by correspondence. We have been privileged to observe so much good practice and devoted care of the most vulnerable babies. Our recommendations should not be taken to indicate that radical changes in the manner in which health professionals practise fetal or neonatal medicine are called for. We hope that our deliberations and conclusions can be of help to all those who, in whatever role, have to make critical care decisions.
I wish to thank all the members of the Working Party who have committed immense time and effort to this work, far beyond the call of duty. I owe a special debt of gratitude to David Archard who chaired meetings for me in my absence on more than one occasion. I thank the Nuffield Council for their support and wise advice. The counsel from Sir Bob Hepple, Chairman of Council, was particularly appreciated. The Working Party as a whole would want to express particular thanks to Catherine Moody. As Secretary to the Working Party, she has been a model of intellectual stimulation, patience and diplomacy. We are also grateful to Professor Sandy Thomas, Director of the Nuffield Council, and other colleagues in the Secretariat, especially Harald Schmidt, Caroline Rogers, Julia Trusler and Catherine Joynson.
