Minutes of the meeting held on 31st August 2005
Thu, 8 December 2005
PLFN (05) 5th meeting
NUFFIELD COUNCIL ON BIOETHICS
WORKING PARTY ON THE ETHICS OF PROLONGING LIFE IN FETUSES AND THE NEWBORN
Minutes of the fifth meeting held at the Charlotte St Hotel, London on Wednesday 31st August 2005
PRESENT:
Professor Margaret Brazier OBE (in the Chair); Professor David Archard; Professor Alastair Campbell; Ms Bonnie Green; Professor Erica Haimes; Dr Monica Konrad; Professor Catherine Peckham CBE; Dr Stavros Petrou; Professor Charles Rodeck; Ms Anne Winyard; Professor Andrew Whitelaw
APOLOGIES:
Professor Linda Franck; Professor Neil Marlow; Dr Philippa Russell CBE; Professor Sandy Thomas
SECRETARIAT:
Dr Catherine Moody; Catherine Joynson; Harald Schmidt; Clare Stephens
INTRODUCTION
1. Professor Brazier welcomed the members of the Working Party. The principal aim of the meeting was to discuss the latest drafting on economic, clinical, social and ethical issues. Other business included consideration of the responses to the consultation and taking note of issues arising from fact-finding and other meetings and visits. Arrangements for future fact-finding meetings needed to be confirmed.
MINUTES OF THE FOURTH MEETING
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2. The minutes of the fourth meeting were agreed as a true record.
Matters Arising
3. A recent proposal for the Working Party to visit the Netherlands was discussed and agreed, provided the visit was balanced by information gathering from another European country with contrasting practice, probably France. Two separate visits by two small groups of Working Party members were envisaged. The Working Party noted that the Council had good links with the French National Consultative Ethics Committee for Health and Life Sciences (CCNE), which in 2000 had published an Opinion on prolonging life in the newborn.
RESPONSES TO THE CONSULTATION PAPER
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4. To date, a hundred responses to the consultation had been received. The views expressed were wide-ranging, well thought through and helpful. Approximately half had been received from individuals and half from organisations; some responses had been from overseas. Professor Brazier reminded members to take account of the respondents’ views in their drafting. Members asked the Secretariat to analyse the responses to the consultation in order of the questions asked and to identify any new topics that were raised. Following normal practice for reports of the Nuffield Council, where permission was given, a list of respondents would be included in the printed copies and the individual responses made available for the public upon the Council’s website.
SCHEDULE OF VISITS, FACT-FINDING MEETINGS AND COMMISSIONED PAPERS
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Reports of visits
5. Given time constraints, Professor Brazier asked members to send any comments on the draft notes of recent fact-finding meetings and other visits directly to the Secretariat. Included were the notes of the fact-finding meeting to Manchester, the Hull meeting, the café style meeting held at the DANA Centre, London, the visit to the RCOG and the visit to Homerton hospital. Members also noted that Professor Brazier had attended a meeting of the Archbishop of Canterbury’s Ethics Committee on 9th May 2005, at which issues arising from the consultation document had been discussed. A formal response had since been received from the Church of England’s Mission and Public Affairs Council.
Commissioning
6. There was a discussion on whether the Working Party should commission a paper that summarised current practices with regard to withholding or withdrawing life support from critically ill children, adults or the very old. The conclusion was that the Working Party should identify the further research that was needed, rather than commission it.
Future visits and fact-finding meetings
7. The Working Party noted that the meeting with representatives of the Council for Disabled Children, originally scheduled for 7th July, would be re-arranged. An update was provided on plans for the inter-faith workshop, which would be held on 8th September. Arrangements were needed for the meeting with healthcare commissioners and managers which would take place at the meeting of the Working Party to be held on 2nd February 2006. Members would advise the Secretariat on suitable attendees. The Secretariat also agreed to canvas members on interest in a visit to a school for disabled children. Visits could be arranged for either Manchester or London.
8. There followed a discussion on whether pressure on resources ever caused the hastening of decisions about the care of babies in an intensive care unit. The Working Party noted that BLISS would be able to provide examples of real scenarios where there had been multiple calls on the same resources.
DISCUSSION OF DRAFTS CONTRIBUTED BY MEMBERS
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9. Professor Brazier encouraged all members to include controversial areas in their drafting. Her experience was that this helped to stimulate new ideas. There would be plenty of scope for subsequent editing. It was agreed that there should be a general discussion to confirm the remit of the Working Party at the sixth meeting.
Drafting on economic issues and ‘the public good’
10. Members continued the discussion of the drafting on economic issues and the ‘public good’ which was begun at the fourth meeting. A number of relevant points had been raised in the responses to the consultation, for example on the use of QALYs and on utilitarian principles. Both sections would be revised in light of these comments. Issues raised in discussion included: suggestions for scene-setting in the introduction section and suggestions for case studies; the overall costs of treating very premature infants; the economic effects when a national limit for resuscitation was imposed; the lifelong economic costs to parents and the public purse in bringing up a child with a disabling condition; the sums paid out in legal costs when there was a dispute; costs of improving diagnoses to help in decision making; the need for economic evaluation of new treatments; the recruitment and retention of staff in the health services; why caring for a disabled child was so universally regarded as a financial burden when the UK was the fourth richest country in the world; reconciling a focus upon the individual with the more usual economic approach, which was at the population level. Arguments for ‘the public good’ in the context of healthcare resources were agreed to involve major ethical issues. The arguments and counter-arguments would need to be examined further. It was noted that many people had serious objections to wider use of the QALY measure, for example to discriminate against an elderly person having only six months to live in favour of treating the very young.
Drafting on clinical issues
11. A number of contributions to the drafting on clinical issues were made. It was agreed that the introductory section on recent history was useful and should be retained. More was needed on future developments and the Report should include a box with information from the Childhood Development Study, showing how survival rates at birth had improved since 1946.
Drafting on social and ethical issues
12. The Working Party discussed whether, for the Report, social and ethical issues should be merged or contained in separate sections. Alternative proposals were made for the working structure of the Report. It could be divided into three sections, entitled, respectively, ‘The fetus’, ‘The threshold of life’ and ‘The newborn’. A different model would be to present introductory and concluding chapters on ethics, with other chapters in between. There were further models that merited consideration and it was agreed to finish the discussions and take a decision on the matter at the sixth meeting.
13. With regard to the drafting on ‘Acts and omissions’, it was agreed that the Working Party should address the contentious issue of neonatal euthanasia. There was potential for confusion in the terminology used. According to the BMA guidelines, voluntary euthanasia concerned situations where death was brought about at the patient’s request. Non-voluntary euthanasia concerned the killing of a patient who does not have the capacity to request or consent to it. This category included babies. Involuntary euthanasia was the term used for situations where the person was competent to make the decision but (for example if they were incapacitated) euthanasia took place against their will or without their consent. The drafting might usefully dissect the arguments for euthanasia made in the Groningen papers. It should also examine whether there was a moral difference when an act was carried out with the deliberate intention of causing death, and when it was not. There followed a discussion on neonatal euthanasia, including on the doctrine of ‘double effect’. It was noted that the guidelines of the Royal College of Paediatrics and Child Health advised doctors that administering a drug with the prior intention of causing death was unlawful.
14. Members queried whether the way in which parents were presented with information affected their choices. This led to discussion on whether or not parents should retain the ultimate responsibility for decisions about their child’s care and whether different scenarios merited different approaches. Finally, some general feedback was provided on the drafting on ‘Decision making’. Other drafting was carried forward for further discussion at the sixth meeting.
ANY OTHER BUSINESS
15. Professor Brazier thanked members for their offers to participate in the ECSITE seminars involving schools and arrangements were discussed.
The next meeting took place at 10.00 am on Thursday 8th September 2005
Last Updated Thu, 8 December 2005