• Newborns and minors
• withdrawal/withholding treatment
• best interests
• neonatology
• intensive care
• clinical ethics
• allowing minors to die
• donation/procurement of organs/tissues
• prolongation of life and euthanasia
• quality/value of life/personhood

If you have the misfortune to be diagnosed with a serious illness, you might expect that the treatment that is offered when you go to see a medical specialist would be reasonably consistent. You might expect that the options given and recommended would be pretty similar between different clinicians, and that the specialist's personal religious and moral views would not come into it.

But the paper in this issue of Journal of Medical Ethics by Heuser and colleagues1 suggests that this is not the case for American women whose fetuses are diagnosed with very severe anomalies. The vast majority of US obstetricians in their survey would discuss with the woman the option of termination (though worryingly a small number would not). But if she chooses to continue the pregnancy and is keen that standard measures are taken that would increase the chance that the fetus is born alive, 7% of specialists would encourage or support her decision, while one-third would refuse her request and about one-half would try to dissuade her.

There are two striking features about Heuser's survey results. The first is about the extent to which counselling for these severe anomalies deviates from the widely endorsed norm of non-directiveness that is supposed to apply to antenatal counselling.2–4 The second feature is about the variability in advice and options that are apparently provided.

The idea that doctor counselling following prenatal diagnosis should be non-directive arises from concern about associations with eugenics,4 cognisance of the spread of views within the community about abortion and a sense that this respects patient autonomy.3 However, there is evidence from a range of sources that directiveness is common, particularly for the most severe malformations.5 ,6 Pauline Thiele, writing in this journal last year (following her own experience of prenatal diagnosis of a severe chromosomal disorder), described eloquently her experience of medical practitioners who were far from neutral about her choices.7 Is there something special about the most severe fetal anomalies, those that are associated with a high likelihood of early neonatal death, which would make it appropriate for doctors to provide explicit advice or to limit maternal choices? One idea might be that it would be better for the fetus to be aborted, or to die during the birth process, than to be live born. If the infant is only going to live for a short period, perhaps it would be better for them not to experience the potential pain and distress of a short period of extrauterine life. But there is no good reason to think that the fetus suffers in utero, and postnatal suffering ought to be able to be treated with appropriate palliative care.8 More plausibly, obstetricians' reluctance to provide active interventions on behalf of the fetus (eg, caesarean section, induction of labour, or instrumental delivery) relates to a worry about causing the woman harm for the sake of little measurable benefit for the fetus. This might be thought to respect the important ethical principle of non-maleficence. Prima facie, it seems reasonable for doctors to discourage choices that they perceive as harmful or potentially harmful, without commensurate benefit.

The problem, of course, is that this neglects the strong desires that women may have to hold their infant while alive, even for a short time, and the distress that they may anticipate at termination of pregnancy or the death of the fetus in utero.9 Weighing the potential psychological and emotional benefits of live birth against the physical risks of caesarean section and other interventions is not something that doctors have particular expertise in. These are value judgements, not scientific judgements. Furthermore, decisions about interventions during labour, or about the mode of delivery are ones that, usually, women are allowed to make. It may be reasonable for practitioners to make recommendations, but to fail to discuss or to fail to respect choices that are usually available during pregnancy and labour, and that at least some reasonable peers would offer, represents unjustified paternalism.

The evident variability in obstetric decision making in the face of ethically contentious alternatives should not be surprising. There is considerable variability in end-of-life decisions between countries and within countries. A large international survey of almost 2000 adult intensive care doctors found major variation in end-of-life attitudes and in preferences for management, including the use of do-not-resuscitate orders and terminal withdrawal of mechanical ventilation.10 This variability can arise from a number of factors, including doctor experience, place of training, specialty,11 attitudes to risk12 and religion.11 In Heuser et al's survey, approach to decision making was significantly associated with obstetrician gender but interestingly not age, religion or years of experience. Nevertheless, it still appears likely that the observed differences in reported practice represent the influence of personal doctor preferences.

What should be done about the apparent variability in management and advice given to pregnant women with severe fetal anomalies? One answer would be to provide clear guidelines about ethically appropriate approaches to management in this situation. In fact, such guidelines have been available for some time. In this issue, Chervenak and McCullough summarise their own recommendations and the ethical basis for these.13 But another answer would be to make practitioners aware of how their practise compares with their peers. Where their recommendations, or management differ from a significant proportion of their colleagues, clinicians should take a careful look at what they are doing and whether it is justified. Thus, Heuser et al's survey may itself provide an important step towards a more consistent and ethically defensible approach to management of severe fetal anomalies.