Supported by the European Foundation for the Care of Newborn Infants and The Lancet, ECCF organised a meeting bringing together a pan-European group of experts from the fields of medicine, law, philosophy and economics alongside patient groups and policymakers to debate the issues and find new answers.
Through a one-day facilitated debate, the group addressed the following questions from a practical and ethical perspective:
Who should participate in the decision making process and what should be the role of parents?
How and by whom can parents be best supported in this critical situation?
How should information about long-term disabilities be used to inform decision-making?
How can we achieve consensus in case of divergent views?
What is the value of guidelines in such situations?
It was the first time that parental involvement in decision making had been debated by individuals from so many different European countries, representing a cross-section of attitudes to this highly emotive issue.
The meeting was chaired by Neil Marlow, Professor of Neonatal Medicine, University College London. He is the chief investigator of the EPICure Study, one of the largest longitudinal studies of extremely preterm birth. Neil is currently President of the European Society for Paediatric Research. He was elected as a Fellow of the Academy of Medical Sciences in 2007 and awarded the honour of Honorary Life Friend by Bliss, the UK premature babies charity in recognition of his contribution to clinical care.
Outcomes in the eye of the beholder I: Executive summary and workshop conclusions
Infants born in gestation week 22 to 26 are at exceptionally high risk of death or severe complications, including severe neurological and respiratory morbidity.
Approximately 10% of all children born in Europe every year are born prematurely (before week 38), and the rate of premature births is increasing in all major European countries. The EPICure and EPICure 2 studies have shown that in the UK, the incidence of premature births rose by 30% from 1995 to 2006. The cause of this increase is not fully understood, although ethnic factors and increasing maternal age are thought to play a role.
Consensus between the parents of a very premature infant and the clinical team should be the overall priority in the decision-making process.
The child’s best interest should be safeguarded in the decision-making process.
Every infant must be considered on an individual case-by-case basis, as the parents will face different ethical dilemmas when making the critical decision depending on their cultural, social and religious context.
Healthcare professionals must take care to listen to the parents and ensure that both sides share an understanding of concepts such as risk, disability etc.
Parents should be involved in the decision-making process from the outset and should not be denied access to information; however, individual parents will have very different needs and abilities in terms of assimilating information and coping with emotional stress. The emphasis should be on caring for the family as a whole, from the point of admission onwards.
Parents of very premature newborn babies often show clinical and behavioural signs consistent with post-traumatic stress disorder.
There is at present a severe lack of research into prevention of premature births and the disabilities caused by this, and more funding is urgently required.
There is considerable variation between countries and centres within the EU with regards to neonatal policies and practices, most likely reflecting cultural and political differences. The aim should be not to attempt to provide guidelines for the actual treatment of very premature infants, but to provide a framework for ethical decision-making, parental involvement, organisation of perinatal services etc.
The framework needs to include ways of dealing with divergent views and how to appeal decisions.
Read the media release here.