Minutes of the meeting held on 24 November 2004
Fri, 11 March 2005
PLFN (04) 2nd meeting
NUFFIELD COUNCIL ON BIOETHICS
WORKING PARTY ON THE ETHICS OF PROLONGING LIFE IN FETUSES AND THE NEWBORN
Minutes of the second meeting held at the Nuffield Foundation
28 Bedford Square, London WC1B 3JS
on Wednesday 24 November 2004
PRESENT:
Professor David Archard (in the Chair)
Professor Linda Franck
Ms Bonnie Green
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 Alastair Campbell; Dr Monica Konrad; Dr Sandy Thomas; Harald Schmidt
SECRETARIAT:
Dr Catherine Moody; Caroline Rogers; Elaine Talaat-Abdalla
INTRODUCTION
1 Professor Archard welcomed the members of the Working Party and especially Dr Petrou, since this was his first meeting. The principal aims of the meeting were to identify and begin to discuss the main social and ethical issues, and to advise upon the questions to be used in the Council’s consultation. The plans for fact-finding meetings and visits would also be discussed.
2 There had already been media interest in the Working Party and the Chairman extended thanks to members for providing interviews at short notice. It was unusual for a Working Party of the Council to receive so much attention before the launch of a consultation.
MINUTES OF THE FIRST MEETING
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3 The minutes of the first meeting were approved, subject to some minor changes.
Matters Arising
4 It was decided not to take up a suggestion that a practising nurse should be invited to become an additional member of the Working Party, to keep the size of the Working Party to a manageable number. It was agreed that membership should not be expanded, and that consultation with a practising nurse should be included in the fact finding meetings. The list for consultation was expanded to include the main nursing associations.
5 It was noted that the Terms of Reference had been agreed by the Council, after slight amendment.
PLANS FOR CONSULTATION
Draft consultation paper
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6 The Chairman explained that the draft consultation paper contained a list of questions which members were free to add to, replace, or amend. Some of the questions had potential to be expanded into different sub questions. Also, the placement of questions within the background text needed careful consideration. He invited comments on the background text, and suggested that any inappropriate or unhelpful sections should be removed or clarified.
7 Members agreed that the language used in the paper should be as accessible as possible to a lay readership. Several members thought that the tone of the document should be more positive and that discussion of issues should be presented in a more balanced way. The inclusion of a comprehensive Glossary would help in this regard. Some advice was provided on terminology. To aid understanding, there was general support for the idea of providing an example or case study to support scenarios within the consultation document.
8 Sections were addressed in turn. Substantive changes to the ‘Introduction’ and ‘Background’ sections were proposed, to tease out the fine distinctions that existed between different possible scenarios where issues of prolonging life arose. For each scenario, there were three different decisions to take:
• Whether to begin treatment
• Whether to stop treatment
• The level of treatment (eg aimed at improving health or palliative).
The Background section needed to include the point that many babies who survived with impairments were healthy, and their families would consider them to be ‘doing well’, even if they had a range of impairments. Too often within society, the term ‘disability’ had strong negative connotations. The Working Party asked for a definition of disability and different approaches to the subject to be included within the consultation paper.
9 Subsequent sections were discussed in detail and clarification was provided about the circumstances under which a case might come to court, about clinical practice and about the treatment of pain. There was a discussion whether the sections on ethical and social issues should be merged. The Working Party concluded that lay readers would expect them to be separate, and they should therefore be presented accordingly. It was decided that the most informative order for the sections to appear would be as follows:
Ethical issues
Social issues
Economic issues
Professional guidance and the law.
10 The proposed ethical questions were modified to make reference to the moral status of the fetus; acting and omitting to act; and the role of autonomy or ‘self-governance’. A further new question was suggested, around responsibility for decision-making. A number of suggestions were made for new text to be included in the section on social issues and for more precise wording to be used, especially on perspectives of disability and what was meant by ‘quality of life’. It was agreed that a new question(s) around social issues should be formulated. The heading of the section entitled ‘Regulation and other guidance’ was changed to ‘Professional guidance and the law’, since professional guidance was as important as the legal framework and could itself be the subject of legal challenge. Under ‘Economic issues’, the Working Party agreed that the text should be amended to make clearer what the Working Party understood by economic considerations.
11 After some discussion, members agreed that questions should be relatively open ended, so that the number of responses was maximised, non-experts did not feel excluded, and people were free to address issues that the Working Party might not predict. The intention of the consultation was to be inclusive of all views and to distinguish the differing attitudes to different situations. It was also agreed that the questions should be embedded at appropriate points in the text. The Chairman asked members to consider the proposed distribution list for the consultation. Further suggestions were made, at the meeting or sent later.
DISCUSSION OF SOCIAL AND ETHICAL ISSUES
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12 The Chairman asked whether the suggested list of social and ethical issues provided in the paper was accurate and sufficiently comprehensive, since it would be used as the framework for subsequent discussion by the Working Party. Members agreed that these issues should be considered together, to enable the implications of formal ethical reasoning for actual practice to be debated. It was proposed that the issue of who should have responsibility for decisions should be added to the list, because others besides the parents, for example healthcare trusts, had difficult dilemmas to resolve. Further issues that arose in discussion were: the contribution of ethnicity and religious factors; the influence of personal experience, including exposure to the views of the mass media, in shaping people’s views; and whether current or possible developments in science or medicine might raise new ethical issues.
The Chairman summarised the social and ethical issues that had been identified. These would be circulated to members for comment.
PLANS FOR VISITS AND FACT FINDING MEETINGS
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13 The provisional plan for visits and fact finding meetings was discussed. Members noted that although the Secretariat would usually try to schedule fact finding meetings on a date already scheduled for a meeting, new dates would also need to be sought, particularly for visits. It was agreed that members of the Working Party who were not already familiar with the hospital environment would make visits to neonatal units in hospitals in Manchester and London. In addition, all members would have the opportunity of attending a seminar based at the neonatal unit at Queen’s Hospital, Nottingham, to which neonatologists, antenatal and neonatal nurses, obstetricians, neonatal counsellors and others would be invited. It would be important to meet healthcare managers, including specialist commissioners of neonatal intensive care services and representatives from Primary Care Trusts. This could be done either through the seminar at Nottingham, or in separate fact-finding meetings.
14 A meeting with older children, parents and carers would be very helpful as would a visit to a Day Centre and further meetings with parents .After some discussion, it was decided that fact finding meetings with researchers would not be needed at this stage. Instead it might be possible to hold a ‘horizon scanning’ meeting to which a small number of experts were invited. Alternatively, the Working Party could commission a paper. The Chair suggested that there should be a fuller discussion at the next meeting about how to address future scientific and clinical developments. A fact-finding meeting with social service professionals was essential. It was noted that the Disability Rights Commission would also be interested to meet members of the Working Party. The issue was raised of whether a meeting with ethicists from continental Europe should be arranged. It was agreed to debate this matter at the next meeting. Members noted with interest that there would be a conference on Development in Neonatal Intensive Care medicine held at the Novotel West, London on 3rd to 4th March 2005, and it might be possible to arrange a fact-finding meeting as a satellite. The remaining plans and timetable for fact-finding meetings were approved in principle but not discussed in detail.
ANY OTHER BUSINESS
15 The Secretariat reported on plans for a Web based Discussion Board, that would allow members to discuss issues between meetings. These plans were endorsed by the Working Party. Members suggested that it would be useful if the system automatically sent an e mail alert when a new message was posted.
16 The Chair reminded members to return their declarations for the Register of Interests, so that these could be placed on the Web site.
The next meeting will be at 11.00am on Thursday 3rd February 2005
Last Updated Fri, 7 October 2005