Minutes of the meeting held on 3 February 2005
Mon, 10 October 2005
PLFN (05) 3rd meeting
NUFFIELD COUNCIL ON BIOETHICS
WORKING PARTY ON THE ETHICS OF PROLONGING LIFE IN FETUSES AND THE NEWBORN
Minutes of the third meeting held at 28 Bedford Square, London WC1B 3JS on Thursday 3 February 2005
PRESENT:
Professor Margaret Brazier OBE (in the Chair); Professor David Archard; Professor Alastair Campbell; Professor Linda Franck; Ms Bonnie Green; Professor Erica Haimes; Dr Monica Konrad; Professor Neil Marlow; Professor Catherine Peckham CBE; Dr Stavros Petrou; Professor Charles Rodeck; Dr Philippa Russell CBE; Ms Anne Winyard; Professor Andrew Whitelaw
APOLOGIES:
Dr Sandy Thomas
SECRETARIAT:
Dr Catherine Moody; Harald Schmidt; Catherine Joynson; Mun-Keat Looi; Caroline Rogers
INTRODUCTION
1 Professor Brazier welcomed the members of the Working Party and Professor Campbell, since this was his first meeting. The principal aim of the meeting was to begin a substantive discussion of the main social and ethical issues. Other goals were to finalise the consultation document, discuss further the plans for fact-finding meetings and agree a work plan for the remaining Working Party meetings. Professor Brazier also informed members that Professor Sir Bob Hepple QC, the Chairman of the Council, would be joining them for lunch.
2 Media interest in the Working Party had continued and Professor Brazier extended thanks to Professor Marlow for drawing advance attention to the consultation during a recent radio interview.
MINUTES OF THE SECOND MEETING
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3 The minutes of the second meeting were approved, subject to a number of changes.
Matters Arising
4 Professor Brazier drew the attention of members to the tabled papers, which included written comments from Professor Haimes, details of the proposed Web based Discussion Board, a draft work plan and a timetable for future meetings.
DISCUSSION OF SOCIAL AND ETHICAL ISSUES
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5 The discussion of social and ethical issues was based on the set of nine issues that had been developed at the previous meeting. These were discussed in turn.
1 Moral status
How should the moral status of the fetus and of the newborn influence our views on the ethics of prolonging their lives? What are the critical determinants of moral status? Do, for instance, viability and birth make a significant difference?
In considering moral status, what weight, if any, should be given to the fact that a person is at a certain stage of their life? Is there a difference between prolonging the life of somebody at the very beginning of their life and somebody at the very end?
6 For the purposes of the discussion, it was important to separate moral status from what was correct in law. The term ‘status’, in a moral sense, was used to convey whether the features or properties of a subject made it wrong to treat that subject in a certain way. It was accepted as wrong to harm a born human being, but should the (unborn) fetus be regarded in the same way? For some people and in the case of the law, the concept of a single moral ‘switch’ was important. The law treated the moment of birth as a switch. The Working Party discussed whether any particular stage of development was sufficiently important to be ‘the switch’ The opposite view was to regard human development as a continuum from the fertilization of the egg through to birth and beyond. Here, the difficulties were about when, how and why moral weight should be assigned. In the middle ground, there might exist a number of steps based on stages of fetal and infant development, rather than a single switch. Within any discussion about moral status was the question of whether age in itself conferred moral importance. For example, was extending the life of a newborn baby for a fixed duration the same, in moral terms, as extending the life of an elderly person?
2 Acts and omissions
Can a clear distinction be drawn between acts and omissions, between actively intervening and failing to do something, most crucially between treatment and its withdrawal? Further, if this distinction be drawn, is it morally significant? And if it is morally significant, how important is the difference?
7 The Working Party noted that for some people, there was no moral difference between achieving the same consequences by an act or an omission. For others it was morally worse deliberately or intentionally to take an action that had particular consequences than to omit or not act. In practice, however, the distinction between acting and omission might not be clear. Some hypothetical examples were discussed.
8 It was observed that doctors had duties towards their patients and parents towards their children. Taking duty into account, the person who made such decisions needed to consider whether he or she would be culpable if they omitted to act. For example, somebody deciding not to give funds to help a malnourished population might be failing in his or her duty because they could have known that by omitting to act, more people would almost certainly die. This example also served to highlight the relationship between knowledge and omission. If a person did not know the consequences then they might not be culpably in remiss.
9 The current presumption within clinical practice in the UK favoured the prolonging of life.
3 Disability and the quality of life
By what criteria should disability and the life led by a disabled person be evaluated? Can we make judgments about somebody’s quality of life and what role should any such judgments play in our moral decision-making?
10 It was sometimes assumed that, because a child had a disabling condition, an intervention to increase their chances of survival would not be in their best interests. Others would say that, instead, decisions about the future of a child should be based on that child’s best interests. For many people, it mattered when a child’s life was described as intolerable. What was meant by intolerability? The concept was explored further, in terms of the consequences of having an illness or other disabling condition.
11 Different interpretations of the terms ‘quality of life’ and ‘state of health’ were usually made by parents and health professionals, and this could sometimes lead to conflicts within a shared decision making process. Disability could be entirely compatible with a high quality of life. Some families would take the view that even a baby who was extremely compromised by disability should be saved, though sometimes this would not be a doctor’s view. By contrast, doctors sometimes wished to prolong a fetus or baby’s life against a family’s wishes. In these circumstances, paediatricians could sometimes find themselves in the position of being the child’s advocate.
12 There was a genuine difficulty in establishing the precise meaning of the term quality of life. The literature in this which area was confusing. Did it refer to health status, or did it refer to the state of happiness? If it referred to the state of happiness, was it plausible to use the same measures for all people? For example, a situation that was intensely disruptive to some families might be easily accommodated by others.
13 Many health economists and the National Centre for Clinical Excellence (NICE) took the view that the value of a quality adjusted life year (QALY) gained by a 70 year old was equivalent to the value of a QALY gained by a younger person.
4 Who decides?
Who should be the principal decision-makers in any situation in which the question of prolonging the life of a fetus or newborn arises? And what weight should be given to the views of each decision-maker?
14 The decision making process needed closer examination. Asking ‘Who decides?’ was in itself ambiguous, since it was already clear that no single person or agency took a decision about prolonging life. What weight should be given to different interests, such as the best interests of the child? There were a number of issues to consider. Was the group of people represented during the decision making process sufficiently wide ranging in their views? Who should have ‘first say’ and ‘last say’? Was there any assessment of whether appropriate social structures were in place to provide support for the child and their family? A particular difficulty lay in conveying risks when the outcome was uncertain.
15 It was agreed that, although it might be difficult to achieve, the Working Party should try and establish whether there were important moral steps associated with development, that might become the basis of points of decision making.
5 Best interests
Promoting the best interests of the child is a basic principle of law and policy. Can the concept of best interest be applied to the best interests of the fetus and of the newborn, and if so, how should these interests be understood in any particular case? Are there others whose interests the decision makers should consider?
16 It was already clear that there was often a great deal of uncertainty about the best interests of the child. Some might say that the parents were best placed to judge the best interests of the child, but this was not the position of the law. The role that parents played required careful analysis: they had to balance many concerns and it should not be assumed that they acted solely as a proxy or ‘voice’ for the child. Did parents truly have enough information to be able to weigh their immediate concerns for a particular child against responsibilities towards their other children?
6 Inequality and unfairness
Is there unfairness in the access that different individuals might have to medical and other resources and facilities? How can such unfairness be evaluated?
7 Public good
How might the significance and weight of economic factors such as the costs of prolonging life and of disability, be considered in any debate about the ethics of prolonging life?
17 Both these issues were about factors that affected society beyond the family. Should economic considerations be made more explicit within the decision making process? Greater transparency could lead to the costs and benefits being properly taken into account. Society had to operate within budgetary limits, and so there was a need to consider what the balance should be, between caring for a few children needing high levels of care and caring for many children who were growing up in deprived environments and who could benefit enormously from society’s help. The Working Party agreed to discuss this policy issue in the Report.
18 Economists spoke of ‘opportunity costs’, such that decisions about extending the life of one group at a certain ‘cost’ was at the ‘expense’ of life years ‘lost’ by another group. But were some economic factors missing from such calculations? For example, the costs of caring for some children escalated considerably as they grew older, but this could be offset against the costs of dealing with family break ups, taking other children into care, and so forth. In other cases, children whose initial care was expensive became less costly to care for as they grew older. Members noted that the Prime Minister’s Strategy Unit was currently considering the options for government policy on such issues.
8 Ethnicity and Religion
What is the role of ethnicity and religion in decision-making with regard to prolonging life?
19 Professor Brazier reminded members of the plans to hold an inter-faith Workshop. This would go some way towards distilling religious viewpoints, although any given individual might decide not to align their personal opinion with, or might misinterpret, the teachings of their faith. Religious advisers were often of great help in assisting parents to balance different factors when deciding upon a course of action. Some views were fairly universal and not held only by members of a faith group. However this was not always the case.
20 Communication to groups of different ethnicity needed to be taken into account, for example by providing translation. It was important, too, to guard against inadvertent labeling of any one group as somehow ‘different’ to another.
9 The influence of personal experience
How are people’s views shaped by their experience of external influences, ranging from the rule of law, through family history, to exposure to opinions in the mass media?
21 Personal experience was often highlighted in press reports and members suggested that a formal analysis might be helpful. A similar analysis might be provided for the responses to the consultation. It was agreed to consider these suggestions later in the meeting, in the context of the discussion on fact-finding needs.
22 Professor Brazier concluded the discussion of social and ethical issues by asking for any further points to be sent to her by the following Monday.
PLANS FOR CONSULTATION
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23 Members offered to help with the redrafting of those areas of the consultation paper where the lay readability could be improved. The Working Party’s view was that, in general, broad questions were best for a consultation document. The introduction section should acknowledge that the contents, almost inevitably, would be distressing to some readers, especially if they had been deeply involved in a personal tragedy. A number of changes to the drafting were agreed.
24 Professor Brazier asked members to consider the proposed distribution list for the consultation and to send any additions to the Secretariat after the meeting.
PROPOSALS FOR REVISED DATES FOR MEETINGS
OF THE PLFN WORKING PARTY AND PROVISIONAL WORK PLAN
TABLED PAPER
25 The Secretariat had tabled this paper which proposed that the timetable of meetings might be compressed somewhat in order to assist the flow of discussions and to allow an earlier launch of the Report. Professor Brazier explained that there was no need for the Report to be a long document, as perhaps had been the assumption, and asked whether members were prepared to consider the change. However, after some discussion, the proposal was set aside for practical reasons.
26 Regarding the timetable for drafting, the members taking the lead for the chapter on clinical practice and future developments agreed to provide a draft for the 4th meeting of the Working Party on 14th April. Ideas for case studies should also be sent to the Secretariat. Similarly, a section on economics would be prepared for the meeting on 14th April. To facilitate the drafting, it was agreed that the afternoon of the meeting on 14th April would be set aside for a meeting of the members involved. Drafting on the law and professional guidance would be discussed at the 5th meeting, which would take place on 7th July. The Secretariat agreed to circulate deadlines for drafting to members.
PLANS FOR VISITS, FACT FINDING MEETINGS AND COMMISSIONED PAPERS
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27 The visit to Nottingham had been arranged for 11th February and plans were well in hand for the visit to Manchester on 23rd March. The plans for further visits and fact finding meetings were discussed. Professor Brazier explained that there were two main constraints on what would be possible. These were the budget and the staff resource capacity of the Secretariat.
28 With regard to meetings with practising clinicians from other European countries, it seemed that the programme for the conference on Development in Neonatal Intensive Care medicine being held in London on 3rd to 4th March 2005 was unlikely to be very accommodating for a fact-finding meeting. After some discussion it was agreed that it might be best if members held informal talks with European experts on a one to one basis. Discussions might be pursued subsequently in written correspondence, perhaps asking the experts specifically to respond to the consultation paper. Inviting experts from Europe to attend meetings of the Working Party was agreed unlikely to be cost-effective. It was noted that the CCNE Opinion No. 65, on neonatal resuscitation, would be a useful reference document.
29 It was agreed helpful that two healthcare managers would be attending the meeting in Nottingham. This might obviate the need to make separate fact-finding arrangements.
30 Of the workshops proposed, it was agreed that the inter-faith workshop should take precedence (this workshop is also mentioned in paragraph 20 above). The Secretariat would take forward arrangements in discussion with Professor Campbell and Professor Brazier. Given that the workshop on legal issues would not now take place, it was suggested that the consultation paper might be made available to aid discussions at relevant forthcoming academic meetings. It was agreed that important information would be gained from a paper on the legal position in other countries and the Secretariat was asked to consider how this might be commissioned. The other ideas for workshops, although attractive, were of lower priority. Regrettably, it would not be possible to put them into practice because of resource limitations. The suggestions for commissioning analyses of press responses and the responses to the public consultation were not discussed in detail. Instead, the Secretariat sought further advice from the Director and Professor Brazier following the meeting.
31 Members expressed an interest in meeting an expert on antenatal results and choices and in visiting a school helping children with special needs. It was agreed that a paper on horizon scanning should be commissioned, depending upon what other bodies, such as the NHS Horizon Scanning group were doing in this area.
ANY OTHER BUSINESS
32 The Secretariat presented information on how a commercially available Web based Discussion Board could allow members to discuss issues between meetings in a private way. Members agreed to use the Board for a trial period and to review experiences at the next meeting. Members could opt to use the Board as part of their usual email service or to access the correspondence through the Web.
33 Members were alerted to a Grosseteste Dialogue debate on the ‘Start of Life’, being held at the Lincoln Cathedral Centre on February16th 2005. The debate was sponsored by the Office of Science and Technology and the Royal Society, through a COPUS grant. Details were held by the Secretariat.
The next meeting will be at 11.00am on Thursday 14 April 2005
Last Updated Mon, 10 October 2005