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Extremely pre-term infants - making critical decisions about our tiniest babies

Background

Rapid advances in neonatal intensive care in recent years allow physicians and nurses to save the lives of babies delivered as early as in week 22 of gestation. However, these very small infants are at a disproportionate risk of early death or severe disability in later life, and their clinical care and support will involve some critical decision-making that will frequently determine whether the child lives or dies. At present there are no European guidelines or frameworks within which these decisions are made – the approach varies considerably between countries and centres, although parental consent is considered critical to the final decision in most countries.

Nowhere in medicine is the impact of scientific advance more immediately related to individual ethical behaviour than in the care of women delivering very premature babies.

Research

In October 2010, in association with the European Foundation for the Care of Newborn Infants (EFCNI), and supported by The Lancet, ECCF brought together a pan-European group of experts from the fields of medicine, law, philosophy and economics to discuss how decision-making could be improved for both families and healthcare professionals.

The meeting identified the wide variations in decision-making guidelines for neonates across Europe as a source of differences in outcomes. Therefore the starting point for research was to collate an overview of guidelines currently in place across Europe in order to identify commonalities and differences between them.

A European survey and national guidance documentation analysis was undertaken with national neonatal or paediatric societies in Europe, exploring treatment decisions and parental involvement in decision making for babies born at 22 to 25 completed weeks of gestation. Responses were obtained from 19 European countries of 28 contacted.

The review found that at 25 weeks of gestation there was universal initiation of active care at birth. At 24 weeks, the policy in 9 countries was to initiate intervention, in 8 countries the policy was dependent upon the condition of the infant, in two countries with restrictions on the extent of resuscitative procedures. At 23 weeks and below, no active intervention was undertaken in 7 countries, and in three countries, parental permission was required to proceed. In eight countries policy depended upon individualised decision-making and one country reported universal initiation of intervention.

In 16 countries the final decision as to what interventions were used rested with the attending doctor.

There was much variation in the involvement of parents in the development of guidelines themselves.

Workshops and events

Click here to read more about ECCF's first workshop in Copenhagen at which the role of different neonatal guidelines across Europe was discussed.

Click here to read more about ECCF's second workshop in London which focused on parental capacity for decision-making in a situation of acute stress.

Fast facts

  • In Europe approximately 10% of all children are born prematurely (before week 38), and preterm birth rates are increasing in almost all countries with reliable data.

  • Infants born 22>28 weeks gestation (approx. 500-1000g) have been termed as having threshold viability.

  • At these low gestations there is less than a 50% chance of survival. Many survivors face a lifetime of disability, including learning disabilities and visual and hearing problems, placing a significant burden on families and health systems.


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