Critical care decisions in fetal and neonatal medicine: ethical issues

Decisions about whether to start intensive care in extremely premature babies

Current practice in most neonatal units in the UK is usually to resuscitate a baby if the outcome is uncertain and provide intensive care until the outlook is clearer. However, as life-saving treatments can be invasive and may cause suffering, it is difficult to know whether this is the right course of action if the baby is unlikely to benefit.

For this reason, the Working Party gave careful consideration to whether or when intensive care should be withheld from babies born extremely prematurely. We concluded that the considerable variability in outcome for such babies meant that a complete ban on intensive care would be an unjustifiable infringement of the interests both of the child and their parents. However, clearer guidance on whether to give intensive care to extremely premature babies would help parents and doctors make more informed decisions about treatment in individual situations.

We propose below a set of guidelines to provide a basis of discussion for professional bodies and parents. The guidelines should be reviewed regularly and revised to reflect any changes in outcomes for extremely premature babies.

Guidelines on giving intensive care to extremely premature babies

At 25 weeks and above

Intensive care should not be initiated and the baby admitted to a neonatal intensive care unit, unless he or she is known to be affected by some severe abnormality incompatible with any significant period of survival

Between 24 weeks, 0 days and 24 weeks, 6 days

Normal practice should be that a baby will be offered full invasive intensive care and support from birth and admitted to a neonatal intensive care unit, unless the parents and the clinicians are agreed that in light of the baby's condition it is not in his or her best interests to start intensive care.

Between 23 weeks, 0 days and 23 weeks, 6 days

It is very difficult to predict the future outcome for an individual baby. Precedence should be given to the wishes of the parents. However, where the condition of the baby indicates that he or she will not survive for long, clinicians should not be obliged to proceed with treatment wholly contrary to their clinical judgement, if they judge that treatment would be futile.

Between 22 weeks, 0 days and 22 weeks, 6 days

Standard practice should be not to resuscitate the baby. Resuscitation should only be attempted and intensive care offered if parents request resuscitation, and reiterate this request, after thorough discussion with an experienced paediatrician about the risks and long-term outcomes, and if the clinicians agree that it is in the baby's best interests.

Before 22 weeks

Any intervention at this stage is experimental. Attempts to resuscitate should only take place within a clinical research study that has been assessed and approved by a research ethics committee and with informed parental consent.

Further recommendations

This report also makes recommendations in the following areas:

• Withdrawing treatment and palliative care
• Decisions during pregnancy
• Avoiding the courts
• Lifelong support for children who survive
• Resource considerations
• Data collection and information
• Training