Disagreements in the care of critically ill children

On 28 November 2018, we held a one-day workshop in London to explore the social and medical factors that might be contributing to how disagreements about the care of critically ill children develop and are resolved.

Around 50 people participated in the workshop, including people with expertise and experience in paediatric intensive care, palliative care, mediation, psychology, sociology, ethics, law, policy, media and faith perspectives, and people with first-hand experience of being a parent of a critically ill child.

The discussion centred around four questions:

1. Are wider changes in society and advances in medicine contributing to the way in which disagreements about the care of critically ill children currently develop?
2. How do the actions, behaviours and beliefs of all the involved parties, particularly parents and healthcare professionals, and the communication between them, play a role in the way disagreements develop?
3. How effective and appropriate are current UK approaches to decision making and resolving disagreements about the care of critically ill children?
4. What are the key challenges for policy makers and others in the future?

This workshop enabled us to facilitate discussion between individuals who have a range of experiences in the care of critically ill children. Although the reasons why disagreements develop are wide ranging, the workshop helped us identify four common themes. These were:

• communication issues
• differing perspectives, beliefs and values that lead to disagreements on, for example, what kind of risks justifiably could be taken
• feelings of powerlessness for both parents and staff, and
• delays in seeking resolution interventions.

The workshop informed our bioethics briefing note Disagreements in the care of critically ill children published in April 2019. We are very grateful to everyone who took part.