Critical care decisions in fetal and neonatal medicine: ethical issues Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Telephone: 020 7681 9619 Fax: 020 7637 1712 Email: [email protected] Website: http://www.nuffieldbioethics.org ISBN 1 904384 14 5 November 2006 To order a printed copy please contact the Nuffield Council on Bioethics or visit the website. © Nuffield Council on Bioethics 2006 All rights reserved. Apart from fair dealing for the purpose of private study, research, criticism or review, no part of the publication may be produced, stored in a retrieval system or transmitted in any form, or by any means, without prior permission of the copyright owners. Production management by: The Clyvedon Press Ltd 95 Maes-y-Sam Pentyrch Cardiff CF15 9QR Printed by: Latimer Trend & Company Ltd Estover Road Plymouth PL6 7PY Critical care decisions in fetal and neonatal medicine: ethical issues Nuffield Council on Bioethics Professor Sir Bob Hepple QC FBA (Chairman) Professor Peter Smith CBE (Deputy Chairman) Professor Margaret Brazier OBE* Professor Roger Brownsword Professor Sir Kenneth Calman KCB FRSE The Rt Rev Richard Harries DD FKC FRSL Professor Peter Harper Professor Søren Holm Mr Anatole Kaletsky Dr Rhona Knight Professor Sir John Krebs FRS* Professor Peter Lipton Professor Hugh Perry Professor Lord Plant of Highfield Dr Alan Williamson FRSE * co-opted members of the Council for the period of chairing the Working Parties on Critical care decisions in fetal and neonatal medicine: ethical issues and Public health: ethical issues Secretariat Professor Sandy Thomas (Director) Dr Catherine Moody Mr Harald Schmidt Ms Julia Fox (until March 2005) Ms Carol Perkins Ms Catherine Joynson Ms Caroline Rogers Mrs Julia Trusler Mr Mun-Keat Looi (until September 2005) Ms Elaine Talaat-Abdalla (until June 2005) Mrs Audrey Kelly-Gardner Ms Claire Stephens (until March 2006) The terms of reference of the Council are: 1 to identify and define ethical questions raised by recent advances in biological and medical research in order to respond to, and to anticipate, public concern; 2 to make arrangements for examining and reporting on such questions with a view to promoting public understanding and discussion; this may lead, where needed, to the formulation of new guidelines by the appropriate regulatory or other body; 3 in the light of the outcome of its work, to publish reports; and to make representations, as the Council may judge appropriate. The Nuffield Council on Bioethics is funded jointly by the Medical Research Council, the Nuffield Foundation and the Wellcome Trust iii 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 deliv- ered 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 constitu- tion of the Working Party itself influenced not just our conclusions, but the way in which we con- ducted 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 delibera- tions 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, v 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 intellec- tual 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. Professor Margaret Brazier OBE Chair of the Working Party vi Acknowledgements The Council would like to thank the members of the Working Party for their expertise and contri- butions to this Report. Also greatly appreciated were the comments from a number of people who reviewed an earlier version. The reviewers were Dr Hazel McHaffie, Professor Alice Noble, Professor Bonnie Steinbock, Professor Michael Freeman, Professor Steve Robson, Professor Neil McIntosh, Professor Janet Carsten, Professor Tom Shakespeare, Professor Ciaran Phibbs and Dr Cynda Rushton. The Council also wishes to express its gratitude to the people who attended or helped to host fact-finding meetings. The discussions at these meetings provided valuable insights for members of the Working Party on issues covered in this Report. Particular thanks are extended to the parents and children that members of the Working Party met. A list of fact-finding atten- dees is provided in Appendix 1. The Council would like to convey appreciation and thanks to the many organisations and individuals who responded to the consultation (see Appendix 2). Members are also very grateful to those who provided advice on specific parts of the Report, including Heather Allen, Tony Allen, Dr Richard Behrman, Dr Susan Bewley, Shabnam Chaudhry, Professor Peter de Cruz, Dr Kate Fleming, Dr Ruth Graham, Professor Alison Macfarlane, Gwen Nightingale, Professor Mike Parker, Professor Sir Michael Rawlins and Dr Helen Statham. vii Members of the Working Party Professor Margaret Brazier OBE (Chair) Professor of Law, University of Manchester Professor David Archard Professor of Philosophy and Public Policy, Institute of Philosophy and Public Policy, Furness College, University of Lancaster Professor Alastair Campbell Emeritus Professor of Ethics in Medicine, Centre for Ethics in Medicine, University of Bristol, later Chair of Medical Ethics, National University of Singapore Professor Linda Franck Professor and Chair of Children’s Nursing Research, Centre for Nursing and Allied Health Professions Research, Institute of Child Health, University College London and Great Ormond Street Hospital for Children NHS Trust Ms Bonnie Green Head of External Relations (until January 2006), BLISS – The premature