Minutes of the meeting held on 10th November 2005
Thu, 2 March 2006
PLFN (05) 7th meeting
NUFFIELD COUNCIL ON BIOETHICS
WORKING PARTY ON THE ETHICS OF PROLONGING LIFE IN FETUSES AND THE NEWBORN
Minutes of the meeting held on Thursday 10th November, 2005
PRESENT: Professor David Archard (in the Chair); Professor Alastair Campbell; Professor Erica Haimes; Professor Neil Marlow; Professor Catherine Peckham CBE; Dr Stavros Petrou; Professor Charles Rodeck; Dr Philippa Russell CBE; Ms Anne Winyard; Professor Andrew Whitelaw
APOLOGIES: Professor Margaret Brazier OBE; Professor Linda Franck; Ms Bonnie Green; Dr Monica Konrad
SECRETARIAT: Professor Sandy Thomas; Dr Catherine Moody; Caroline Rogers; Harald Schmidt; Julia Trusler
INTRODUCTION
1 Professor Archard welcomed the members of the Working Party. The meeting would be used, primarily, to identify whether any issues had been overlooked, and for further debate in areas where the arguments needed to be developed. At the conclusion of the meeting, a fact-finding meeting would be held with Jane Fisher, the Director of the charitable organisation, Antenatal Results and Choices.
MINUTES OF THE FIFTH AND SIXTH MEETINGS
PL (05) 31
2 The minutes were approved subject to any written comments. A final version of the note of the fact finding meeting with BLISS was agreed.
Matters Arising
Verbal
3 The Secretariat reported back from the recent Council meeting. It had been agreed that no change was required to the terms of reference for the Working Party, but the case for changing the title had been accepted, subject to a slight modification to the proposal of Critical care decisions and the newborn: ethical issues. The title would become: Critical Care Decisions in Fetal and Neonatal Medicine: Ethical issues.
4 Members noted the report of the first ECSITE meeting (PLFN (O5) Tabled Paper 5).
DRAFT REPORT
PLFN (05) 32
Initial discussion
5 Professor Archard urged members to concentrate in the discussions upon areas of the draft Report that needed further development. The Working Party should also consider whether the drafting would substantiate the conclusions and recommendations that were beginning to emerge in a number of areas. He proposed that writing partners should continue their discussion after the meeting. As a general point, Professor Archard asked that where possible the Report should be more contextualised and identify real problems for decision making within the Chapters. It was agreed that when the draft Report was sent to the Council, members should receive a copy (see PLFN (05) 34).
6 Professor Archard suggested that the eventual recommendations might be procedural, substantive, or concern future work. Several potential areas were considered.
7 The Report needed to reflect fully on the problems experienced by babies born at term: the focus to date had been primarily on prematurity. The Working Party might want to address what should happen in cases where a pregnant woman refused to act in the best interests of her unborn child, for example by not taking antiretroviral drugs to help prevent HIV infection. One of the commonest areas of serious clinical difficulty was deciding whether or not a poorly grown fetus should be delivered early. It was perhaps self-evident that if it were possible to treat prenatallly this could pre-empt postnatal problems.
Comments on particular chapters
8 It was agreed that the Introduction should ‘set up’ the problems to be addressed by the Working Party. It might usefully include epidemiological data on social background and incidence of prematurity mentioned in the context of the clinical drafting.
9 The content and quality of the drafting on clinical practice was endorsed. The text needed to command the attention of a wider audience and to reflect the difficulties that doctors and nurses, parents and their advisors had relayed to the Working Party at the fact finding meetings. A commentary on the relative importance and frequency of decisions whether or not to prolong life in fetuses and the newborn should be included. A statement, backed up by data if possible, should be provided on whether the babies who were cared for in the intensive care unit tended to be born to older, younger or single mothers, what kind of social background they had, whether the child had been conceived after IVF treatment and so on. Some drafting on epidemiological research was necessary. Also, a description of the information that healthcare professionals relied upon to support their decisions and the degree of certainty attached to those data should be included. The chapter should be completely honest about the times when it was
not possible for doctors to make clear cut decisions. Factors that affected outcomes included cot availability, the baby needing to be transported, and senior doctors not being available at a crucial moment.
10 The drafting on professional guidance and the law should include a table on professional guidance in the UK that compared the different guidance available. The Secretariat agreed to produce this. Comparisons with the law in other European countries (see PLFN (05) 33) would go into an Appendix.
11 The chapter on social issues needed to examine the issues in greater depth and be cross-referenced with the drafting on regulation and professional guidance, clinical practice and family experience. In early discussions it had been hard to draw a dividing line between social and ethical issues. Broadly it seemed that the philosophical questions in relation to decision making were identifying who should decide and determining the weight that their views should carry. The social questions appeared to include the nature of decision making, whether this involved a single or multiple stages, time scale, context and the experience and perceptions of those involved. Professor Archard proposed that he should redraft the section on decision making in discussion with Professor Haimes.
12 An outline for the chapter on family experience had been tabled, and writing would begin in earnest after the meeting. The interface with the neonatal intensive care unit when a child returned home was one of the areas that should be covered.
13 Feedback was provided on the content and length of the chapter on economic issues. Further discussion was needed on the factors affecting the allocation of resources at different levels of the healthcare system, including the hospital setting. A substantial area currently omitted was the antenatal detection of fetal problems through testing and screening, and associated economic consequences. There was only limited research in this area. It was suggested that much of the economic data presented in the drafting might be tabulated. Some ideas were provided for possible conclusions to the chapter.
14 Members noted that the chapter on ethical issues was as yet incomplete. The section on Acts and Omissions had now been substantially revised. More work was needed on best interests and decision making and the Working Party needed to decide whether or not to include sections on the moral status of the fetus and the newborn. It was proposed that the Sanctity of Life should be included as a new area, in view of the discussions at the Inter-faith workshop and because it was raised by some of the responses to the wider consultation. The order of the sections should mirror the order of the questions that would occur to parents facing a crisis of whether or not the life of their child should be prolonged. It was noted that the Royal College of Paediatrics and Child Health distinguished between a young baby at three months and an older child in the College guidelines on the diagnosis of brain death.
15 Discussion was needed of what was meant by intolerable suffering, the capacity of the fetus to experience pain and the relief of suffering. Ethical evaluation was also needed of the arguments for resourcing fetal intervention such as surgery, with careful cross-referencing to the chapter on economics. The Report also needed to
make reference to the social identity of the fetus and the fact that a large proportion of babies in the intensive care unit were enrolled in research studies.
COMMISSIONED WRITING
PLFN(05) 33
The legal position in other European countries
16 Additional information in response to specific questions posed to Professor de Cruz by Professor Brazier would be received by the end of November.
REVISED WORK PLAN AND FACT-FINDING MEETINGS
PLFN (05) 34
Work plan
17 Professor Archard advised members that the deadline for receipt of new drafting after the meeting was Friday 3rd December 2005. The Secretariat would subsequently edit the draft in preparation for consideration by the Council at the meeting in January 2006. The 8th meeting of the Working Party, to be held on 2nd February 2006, would be used to receive feedback from the Council and decide what new drafting was necessary before sending the draft Report for peer review. At the 9th meeting of the Working Party, members would consider the peer review comments, after which substantial revision of the Report was likely to be required.
Fact-finding meetings
18 Plans for fact-finding meetings in the Netherlands and France were reviewed. The Secretariat would resume discussions with Dr Russell about the meeting with representatives of the Council for Disabled Children and would also seek her advice on visits to special schools. Suggestions were made for invitees to the meeting with healthcare managers, commissioner and providers.
19 The Secretariat planned to contact the Institute of Medicine in the USA, in order to find out more about the work of the committee defining and addressing the health related and economic consequences of premature birth. A Report entitled Understanding Premature Birth and Assuring Healthy Outcomes was due to be published in the first half of 2006.
PEER REVIEW: SELECTION OF POSSIBLE REVIEWERS
PLFN (05) 35
20 The Chair asked members to suggest possible peer reviewers for the draft Report. The individuals selected needed not only to be well respected as authorities in their fields but also to have the time and interest to do the work. A small honorarium would be provided and their names acknowledged in the Report. Nominations were made for each area of the Report. The Council would make the final decisions regarding the names and numbers of reviewers to approach, on the basis of the recommendations of the Working Party.
BRIEFING FOR MEETING WITH JANE FISHER
VERBAL
21 Members decided who would lead the discussion with Jane Fisher, on the perspective of parents facing difficult antenatal decisions.
ANY OTHER BUSINESS
22 There was none.
The next meeting will take place at 11.00 am on Thursday 2nd February 2006
Last Updated Thu, 2 March 2006