Critical care decisions in fetal and neonatal medicine: ethical issues
NUFFIELD COUNCIL ON BIOETHICS WORKSHOP ON ETHICAL ISSUES RAISED BY PROLONGING LIFE
Note of the workshop held on 12 June 2003 at 28 Bedford Square, London, WC1B 3JS
PRESENT:
Dr Keith Andrews
Ms Maura Buchanan
Professor Sir Cyril Chantler
Professor John Finnis
Professor Sir John Grimley Evans
Professor Erica Haimes
Professor John Harris
Dr David Jeffrey
Dr Adam Oliver
Professor Charles Rodeck
Professor Raymond Tallis
Professor Francesco Vigano
Professor Andrew Whitelaw
Mr Hugh Whittall
Professor Andrew Wilkinson
Professor Sir Kenneth Calman
Rt Rev Richard Harries
Professor Bob Hepple QC
Professor Catherine Peckham
Professor Martin Raff
APOLOGIES:
Professor Albert Weale
Ms Rosie Wilkinson
SECRETARIAT:
Dr Sandy Thomas
Tor Lezemore
Harald Schmidt
Natalie Bartle
Nicola Perrin
Introduction and aims
The Chairman of the Nuffield Council welcomed the group and thanked them for attending. The aim of the Workshop was to provide guidance for the Council on whether the topic of prolonging life in fetuses, neonates and adults was one that should be considered by the Council in more detail.
Prolonging life in fetuses and the newborn
A combination of factors relating to healthcare, law and culture in the UK had led to problems in clinical decision-making about prolonging life in the fetus. Three parties were involved in fetal medicine – health professionals, parents and the fetus.
There had been significant advances in the treatment and healthcare of the newborn over the past century, but this had not always been matched by an increase in ability to make accurate predictions about the development of disease or the chances of recovery. The age at which fetuses were viable had reduced to as little as 23 weeks. However, extremely premature babies were at risk of lung disease, brain injury, infection and blindness. Actual risk levels of disability in premature babies had been difficult to define and apply because by the time the children had grown up treatments had improved and the risks were not the same. Also, it was difficult to take decisions on the basis of percentages and statistics, since it was never certain what would happen in an individual case.
Several arguments for the selective use of neonatal intensive care (NIC) could be put forward:
– NIC might be worse than death because of the pain and suffering it would cause;
– it might be futile, in the sense that the baby was very likely to die anyway;
– the prospects for the baby’s quality of life later on could be very poor; and
– considerations of cost and the allocation of limited resources might mean that NIC was not possible.
Ideally, the parents and the physicians should agree on the course of treatment. There was no agreement on whether doctors should resuscitate babies against the wishes of parents. Different physicians and parents would have varying views about whether resuscitation should be attempted. The responsibility of the parents for raising the child gave weight to the argument that the parents’ decision should be respected.
There was some discussion of the impact of assisted reproduction on the number of premature babies born. IVF (in vitro fertilisation) had increased the likelihood of premature births indirectly because of the greater number of multiple pregnancies. Other technologies, such as ultrasound and magnetic resonance, were being developed in an attempt to improve the ability to make an accurate prognosis in individual cases. However, further research was needed in all these cases.
The BMA recognised that the same moral duties were owed to babies as to adults and that the criterion in considering treatment was the baby’s best interests. An assessment of the benefits and burdens of treatment should not be separated from that criterion. Workshop participants discussed the legal and ethical issues involved in making decisions about withholding treatment, including the burden of future treatment, the costs and benefits of treatment across a whole lifetime, the difficulties of substituted judgement, and issues surrounding intent.
Participants agreed that there had not been extensive consideration of the role of the family and the wider social consequences of prolonging the lives of fetuses and neonates.
The question of whether very premature babies and fetuses suffered and felt pain was raised. It was difficult to know whether another organism was feeling pain, but there was some evidence that fetuses mounted hormonal stress responses to painful interventions such as needle puncture.
There was some discussion about the difference in the legal approach to a 23 week old fetus compared to a 23 week old premature baby. It was suggested that the difference was not justified due to the scientific evidence of a continuum of development, although another view was that the moment of birth did matter in social terms.
Participants discussed the place of social decision-making compared to clinical decision-making in terms of allocation of resources and who should be involved. There was consensus that, whoever decided, the process of decision-making should be honest and open, and there needed to be room for flexibility in individual cases.
The morning’s discussion was summed up by the Chairman, who identified several issues that had emerged:
– drawing a dividing line between the fetus and the neonate;
– the paucity of empirical research on which to base decisions in some areas;
– the need to be wary of terminology, for example the use of ‘rights’ of parents and children;
– the realities of involving parents in decisions about their children;
– the question of suffering in fetuses and neonates; and
– social issues regarding resource allocation.
Prolonging life in adults
Over the next 30 years the number of older people will increase while the size of the workforce will decline. Ethical issues were raised in decisions about allocating priorities to life-enhancing interventions compared to life-prolonging interventions. Most people wished to be independent and not disabled in old age, rather than to live indefinitely. Following birth, most healthcare resources were used in the final months before an individual died, whenever that death occurs. The reason it appeared that older people cost more money was simply that more people died in old age.
Participants discussed issues surrounding ‘protracted dying’ in cases where a person was admitted to hospital when they were very likely to die or to survive with overwhelming disabilities. The futility of aggressive treatment depended on the particular circumstances. Broad ethical principles were unhelpful, as they sometimes conflicted, and it was not clear how they were to be applied to particular cases. The wishes of the incapacitated patient and team-based decision-making were important, as was reaching a consensus. However, it was observed that even determining the wishes of a competent patient was very difficult. Conversation, empathy and trust were vital in this process and could not be replaced by guidelines or legislation. It was fairer not to leave relatives with the feeling that they had chosen the death of their loved one. There was some discussion on the ethics of allocating resources to patients of different ages.
Increasing life expectancy through new technologies, such as stem cell therapy, raised a number of important issues, such as inequity in access to treatments. It was hard to resist the idea that increased life expectancy was good. Advances in our ability to increase life expectancy may mean our conceptions about the sanctity or inviolability of life would need to be reconsidered.
There was debate about the question of the under-treatment and the over-treatment of older people. Both were problems, but arguably under-treatment was more common. There was little evidence about the incidence of over-treatment.
Advance directives were thought by some to be a valuable way of preventing some dilemmas from arising, but there were several practical problems involved. Deciding whether an advance directive should have more weight than an opinion at the time that treatment was being considered was not straightforward.
The Chairman summed up the afternoon’s discussions and reminded the group that the two primary questions for the Council were: what could it contribute to the debate that was distinctive, and what were the priorities? In addition, views were sought on whether considering both the very young and the very old together was an illuminating approach. Participants expressed a number of views on how the various issues and topics that had been discussed throughout the day could be tackled by the Council. There was consensus that some development of the topic would be welcome, even though its precise nature was disputed.
Last Updated Thu, 8 December 2005