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Should it be available?
Euthanasia for newborn babies with lethal and disabling conditions is illegal worldwide. However, in reality its acceptance and practice vary between different countries.1 In the Netherlands, about 200000 live births occur annually; of these, 10-20 babies—mostly with severe congenital malformations—are thought to be actively killed, yet between 1997 and 2004 only 22 such deaths were reported to the authorities.2
To regulate neonatal euthanasia, clinicians in the Netherlands have argued that all cases should be reported. In collaboration with lawyers, they have developed and subsequently published guidance,3 which defines criteria that must be fulfilled before euthanasia can be considered and which would subsequently be examined by the statutory legal authorities (see box). Doctors who follow this guidance are not guaranteed freedom from prosecution, but to date no paediatrician in the Netherlands has been prosecuted.
In 2006 it was reported in the national press in the United Kingdom that, in response to a consultation undertaken by the Nuffield Council on Bioethics on the ethics of prolonging life in fetuses and the newborn, the Royal College of Obstetricians and Gynaecologists (RCOG) had proposed considering “active euthanasia” in UK practice. Recurrent themes run through any debate about neonatal euthanasia. One is the tension seemingly felt by some clinicians as a result of the fact that in UK law the fetus becomes a legal entity only at the moment of birth. Because of this, the RCOG can recommend that late termination of pregnancy for fetal anomaly should be preceded by feticide, but any clinician who injected a similar severely malformed newborn baby with potassium chloride moments after birth would be guilty of murder. Another theme is the fine line between the practices of withholding life support, actively withdrawing life support, and intervening to deliberately kill the baby. The first two options, when undertaken because of apparent unbearable suffering or because treatment is futile, are seen as acceptable practice and are widespread; the last option is active euthanasia and anyone undertaking such an act should expect to be prosecuted.
The only babies for whom active euthanasia might be considered are those destined to survive and able to support their own ventilation, but who will have a very poor quality of life with no prospect of improvement. This group includes children with malformations such as some severe forms of spina bifida and a smaller group of ex-preterm babies, whose extensive disabilities become apparent only after recovery from early respiratory problems. Extrapolation of the experience in the Netherlands indicates that there would be around 50 such cases each year in the UK.
The report of the Nuffield Council of Bioethics on “Critical care decisions in fetal and neonatal medicine,”4 published after widespread consultation in November 2006, “unreservedly” rejected the possibility of neonatal euthanasia in the context of UK practice even when life is intolerable. Why was this, and why was it apparently received with relief by most paediatricians in the UK?
Parents entrust their newborn babies to intensive care services, often for many weeks—the length of stay is typically much longer than that for adult or paediatric intensive care. They do this because they are confident that clinical decisions, often made in response to unpredictable life threatening emergencies, will be made in the child's best interest and based on the principle that, within reason, the main objective of care is to preserve life.
One of the reasons the UK is resistant to adopting the Dutch recommendations is that active killing as a therapeutic option is seen as a “slippery slope” towards its wider use, although some reject this argument.2 Another reason is the fear that active killing may have a negative impact on the psychology of professional staff, and that parents may feel pressured to accept the option of euthanasia so that they do not become a burden on medical and social services.
Euthanasia can only be an option if the futility of continued treatment is certain. While this may be clear for some congenital malformations and genetic conditions it is often unclear for preterm infants. Older patients may decide themselves that their life is intolerable and request euthanasia or assisted suicide, whereas carers and family must judge the quality of life of a baby. This decision is extremely difficult because indicators that a very preterm baby is likely to be severely disabled are not foolproof. Clinicians who have led discussions that have resulted in active withdrawal of care have to live with the probability that they have occasionally allowed a baby to die who would have thrived.
Health professionals are frequently challenged by the press with deluding themselves by drawing a distinction between the withdrawal of active life support (euthanasia by omission) and active killing of a baby. In practice, experienced neonatologists and neonatal nurses feel comfortable with this distinction; they can discuss it openly with families and help them to understand, for example, the acceptability of infusing opiates at a dose that controls pain and distress but the impossibility of increasing the dose further with the primary intention of hastening death. Neonatal nurses have great expertise in assessing suffering in tiny babies and in providing palliative care.
Acts by neonatologists in the UK undertaken with the purpose of ending life seem to be rare.1 Guidance provided by the Royal College of Paediatrics and Child Health5 around end of life decisions has provided a framework within which UK neonatologists feel comfortable. We have a service that has become progressively more transparent, with parents increasingly involved in making clinical decisions.
The availability of active euthanasia as a therapeutic option would undermine this progress and be a step backwards. However, we must look at how to provide for babies who might be candidates for euthanasia elsewhere in the world—to control their pain and to support their families. Sadly, too often, parents have to battle for essential services that ensure the best outcome for their disabled child, and which also make their own lives more tolerable.
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally peer reviewed.