Minutes of the meeting held on 14 April 2005
Wed, 26 October 2005
PLFN (05) 4th meeting
NUFFIELD COUNCIL ON BIOETHICS
WORKING PARTY ON THE ETHICS OF PROLONGING LIFE IN FETUSES AND THE NEWBORN
Minutes of the fourth meeting held at 28 Bedford Square, London WC1B 3JS on Thursday 14th April 2005
PRESENT:
Professor Margaret Brazier OBE (in the Chair); Professor David Archard; Professor Alastair Campbell; Professor Linda Franck; Ms Bonnie Green; Dr Monica Konrad; Professor Neil Marlow; Dr Stavros Petrou; Professor Charles Rodeck; Dr Philippa Russell CBE; Ms Anne Winyard; Professor Andrew Whitelaw
APOLOGIES:
Professor Catherine Peckham CBE; Professor Erica Haimes; Harald Schmidt
SECRETARIAT:
Professor Sandy Thomas; Dr Catherine Moody; Catherine Joynson; Carol Perkins
INTRODUCTION
1 Professor Brazier welcomed the members of the Working Party The principal aim of the meeting was to discuss early drafting on clinical practice and on economic issues. Other business included updating arrangements for fact-finding meetings, visits and commissioned papers, and reviewing the first responses to the consultation.
MINUTES OF THE THIRD MEETING
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2 Four minor changes were agreed to the minutes of the previous meeting.
Matters Arising
3 Professor Brazier extended thanks to those members who had helped the Council to respond to media interest in the wider consultation and for raising awareness of the Working Party.
4 The tabled papers included updated drafting and notes of two recent fact finding visits to neonatal units, in Nottingham and Manchester, both of which had been interesting and pertinent. Religious faith had proved to be significant factor in decision making. The Working Party made a number of amendments and agreed that the notes should be sent for comment to the people who had attended the visit.
COMMISSIONED PAPERS, DISCUSSION OF DRAFTS CONTRIBUTED BY MEMBERS AND PROVISIONAL WORK PLAN
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Commissioned papers: the law
5 Professor Brazier reported that some background information on the legal situation in other European countries had been commissioned, to be used as the basis for a fact-finding meeting with legal experts during the summer. The considerable variation in legal practice would also need to be discussed, even though this might be more difficult to document. Members agreed to use the commissioned paper as a basis for exploring with their colleagues what really happened in UK clinical practice. Comparisons with the USA could also provide a useful addition to the Chapter of the Report dealing with regulation.
Commissioned papers: horizon scanning
7 The possibility of commissioning some horizon scanning to identify the impact of new and emerging technologies on the fetal and neonatal fields was discussed. The horizon suggested was up to ten years. Specialist scientific advice had been commissioned for some Nuffield Council Reports, but it had usually been sufficient to rely upon the expert knowledge of members. It was noted that the potential for new areas of research to benefit medicine, such as stem cell manipulation or nanotechnology had yet to be established, thus their likely impact upon fetal or neonatal therapy was unclear. It was important not to raise false hopes or expectations amongst parents. It might be preferable to consider new technologies from the perspective either of increasing the certainty of diagnosis or prognosis, or adding additional uncertainty by increasing the number of choices. The Working Party agreed not to commission a specific paper but instead agreed that members should identify the range of possibilities for future developments from which a realistic list of the most likely developments might be derived.
Drafting: general considerations
8 The need to maintain confidentiality until the Report was published was noted, as were the responsibilities, deadlines and provisional timetable for drafting. There was a need throughout the process to preempt two potential difficulties regarding the language chosen. First, the Report needed to be consistent and accessible to all readers. It was important to avoid readers reaching the wrong impression if they were selective in what they read. Secondly, careful monitoring was required to ensure that sensitive issues were expressed appropriately and in a consistent way. The Working Party elected members to take particular responsibility for these issues.
Drafting: Clinical practice and future developments
9 A number of queries were raised in discussion about this drafting, which began with the various pathologies, their detection and treatment in the fetus. Areas noted included amniocentesis in ‘high risk patients’, whether the NHS should meet the costs of prenatal screening done in addition to screening recommended by national guidelines, and situations where a mother might request a Caesarian section rather than natural birth when the prognosis was poor, in the belief that this would improve her child’s chances of survival. There were difficulties in estimating the impact of a technology in epidemiological terms if the treatment was applied selectively, for example only to high risk patients. Also, healthcare professionals might decide to uphold patient choice even when this was contrary to their professional judgement. The meaning of the phrases ‘born alive’ and ‘signs of life’ were discussed. In some hospitals, fetocide would always be performed before a late termination of pregnancy, to ensure that the fetus was born dead. This was in accordance with the guidelines provided by the Royal College of Obstetricians and Gynaecologists. The Working Party expressed some reservations about opening a debate on fetocide. Other topics discussed were early elective Caesarian sections for the protection of the fetus, the increasing use of assisted reproduction in the UK and other countries and increase in the incidence of prematurity, associated with the higher incidence of twin pregnancies. Preimplantation genetic diagnosis would avoid the need for prenatal diagnosis followed by termination. It was agreed that some scenarios from fetal medicine would be useful to illustrate particular points.
10 For the drafting on the newborn, several changes were agreed. The criteria for brain death were discussed. The Working Party commented that none of the babies for whom decisions on stopping life support were taken could be described as ‘brain dead’. Also, some babies survived even after life support was discontinued. Survival rates were noted to be affected by sex or ethnicity, for example, girls were more able to survive than boys and African Americans were more likely to have premature infants. The risks of disability, the chances of survival, the size of the problem and the need to find out the long term consequences of important interventions all required discussion. Data on the number of births at different gestational ages should be provided. Some historical examples were noted, such as the uncontrolled introduction of oxygen therapy, which greatly increased the incidence of childhood disability. Also, it was agreed that the fact should be recorded that the social dynamics of the parent-baby relationship had changed considerably since the introduction of neonatal intensive care.
11 The Royal College of Paediatrics and Child Health framework documents and the principles within the guidelines provided by the British Medical Association (BMA) and the General Medical Council were noted. The neonatal scenarios provided were agreed to raise complex ethical questions that could be used as the basis for discussion in different areas of the Report.
Drafting: Economic issues
12 Members suggested that providing some case studies might help non expert readers and that the social (family) as well as economic costs of not providing services for those who survived should be documented. There was a question for society on the current practice of keeping children alive without consideration of their quality of future life. Discrepancies existed between the levels of legal compensation paid out for different disabilities. Providing comparative costs for newborn, child and adult intensive care and with other categories of care for babies of children was likely to be informative. It was unclear how much the Government would be prepared to spend for the purpose of saving a given life. Was a greater value placed on health gains experienced by the young than those experienced by other groups of the population, such as the middle-aged or the elderly? It might be useful to examine evidence from decision makers to show what happened in practice.
SCHEDULE FOR FUTURE VISITS, FACT-FINDING MEETINGS AND COMMISSIONED PAPERS
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Provisional work plan
13 The updated schedule of meetings was discussed. Professor Archard would attend a conference organised by Hull University on the Ethics of withdrawing treatment to infants, held on 22nd April. A number of members would meet the Ethics Committee of the Royal College of Obstetricians and Gynaecologists on 5 July 2005. Members were also invited to attend the café style meeting at the DANA Centre on 22nd June. A further visit to a neonatal unit was being planned and there would be meetings with representatives from BLISS and from the Council for Disabled Children during and after the main meeting of the Working Party on 7th July. It was agreed to invite the Director of Antenatal Results and Choices to attend part of a meeting later in 2005. Discussion was postponed until the next meeting of a possible visit to a school for severely disabled children. The meeting with healthcare commissioners should take place when the Working Party had formulated precise questions around which the discussions could be based. Members noted the timings of the meeting on 8th September and the inter-faith workshop to be held in the afternoon of that day. The programme and list of invitees would shortly be finalised. Discussions at the workshop would be based around a small number of hypothetical examples.
CONSULTATION WITH THE PUBLIC
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14 Six responses to the consultation had been received. All responses would be circulated to members.
ANY OTHER BUSINESS
15 An offer of help with statistical information had been received from staff of the Confidential Enquiry on Maternal and Child Health (CEMACH). This facility was likely to be very useful.
The next meeting will be at 11.00am on Thursday 7th July 2005
Last Updated Wed, 26 October 2005