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Extremely premature births and parental capacity to make life-limiting decisions about their newborn baby at a time of acute stress

This second workshop in the 'Outcomes in the eye of the beholder' series focused on parental capacity for decision-making at a time of acute stress. The workshop participants included representatives of parents groups, neonatal nurses and doctors as well as ethicists and psychologists.

What the workshop was about

Over the course of two days the group analysed the decision-making process in detail from practical and ethical perspectives, with particular emphasis on the role of the parents and the resolution of divergent views.

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 II: Executive summary and workshop conclusions

Theme 1: Issue of capacity

  • There is little understanding of parental perspectives and parental capacity to make decisions in extremely stressful situations.

  • Research is needed to understand how much stress impacts on the ability to make decisions.

  • Parents need to be enabled by health care professionals – stress doesn’t mean that parents can’t decide – they need to be supported.

  • Shared decision making involves being aware of all perspectives, needs, preferences as well as team dynamics, and this means for the healthcare team as well as the parents.

  • Stress is an issue for doctors as well as parents.

Theme 2: Parental involvement

  • There are important UK publications on involving parents.

  • Ethical principles provide an important framework for understanding ‘best interest’ for babies and relatedly – how parents are involved in these considerations and decisions.

  • It is important to involve parents in decisions about their baby and to provide them with clear options.

  • Importance of: early (antenatal discussions where possible), clear, helpful, non-conflicting information; having time and space to make a decision; emotional support; being able to care for your baby; remembering your baby.

  • The experience is never ever ending and never forgettable, and this is why who makes the decision in the end is very important.

  • Health care professionals need to avoid making parents feel guilty for the decisions they make.

  • How we communicate is important and there is a need for training in this area. It is important to support families to make decisions and manage expectations.

  • Parents can feel isolated across different types of approaches and so an interactive model is important which takes into account the parents’ needs.

  • It is important to consider how news is presented. So, for example, a 10% chance of something positive isn’t necessarily bad news.

  • The key point here is to identify the support that is needed for parents to facilitate a positive decision making process.

  • Sociological studies are important in this area.

Theme 3: Divergent European perspectives

Research has shown that:

  • There is little consensus across Europe for active intervention at 22-26 weeks gestation and lower gestations have more divergent perspectives.

  • There is little evidence of palliative care frameworks being used across Europe.

  • Parents are not involved in putting together decision making guidelines.

  • There is variation across Europe concerning who should decide and how.

  • There is variation in the morbidity and mortality statistics which makes it difficult to report objective information to parents.

  • Considering this as a public policy issue is challenging. There are difficulties in evaluating worth and it is also a very emotive and a morally contentious area.

  • Because of the variation in perspectives, harmonisation across Europe is a challenge. However, there may be some minimal levels of harmonisation to begin with such as making information available in all countries or setting a minimum standard of care e.g. making sure parents are involved in decisions.

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