18 Sep 2023
The care and treatment of babies and young children who are critically ill often involves complexity and uncertainty, and disagreements can arise between parents and healthcare staff about the best course of action. Recent high-profile court cases in the UK have highlighted the damaging effects that these kinds of disagreements can have on everyone involved.
In 2018-19, the Nuffield Council on Bioethics explored the factors that might be contributing to how disagreements of this kind develop, and how they are being resolved. We commissioned reviews of current research and academic opinion, held a multidisciplinary workshop, and met with organisations and individuals, including parents who have been involved in disputes.
Drawing on what we heard, we published a bioethics briefing note that describes the common causes of disagreements between parents and healthcare staff and the changing social contexts in which these issues arise. We make observations about action that might be taken by health policy makers and professional bodies to support good, collaborative relationships between parents and healthcare staff. We felt that any action should support the following aims:
We convened a meeting with senior policy makers and healthcare commissioners in February 2021 to facilitate joined-up discussion of potential areas of action, chaired by Lord Bethell, then Parliamentary Under Secretary of State (Innovation) at the Department of Health and Social Care. There was agreement around the table about the ways in which disagreements could be avoided or recognised early and sensitively managed. We heard that solutions should be system-wide, and that no one organisation could be solely responsible for change. Many of the solutions discussed centred around the need for better support, training, and advice for both healthcare staff and parents when a disagreement is emerging. Participants also called for families in intensive care situations to have more ready access to children’s palliative care services.
Other people and organisations have been carrying out important work in this area with the same ends in mind. This includes the work of:
Danielle Hamm, Director of the Nuffield Council on Bioethics said:
“We hope the review will build on the work that we and others are doing in this area, and that it draws on the experiences and expertise of everyone involved including parents, healthcare professionals, children’s palliative care services and young people themselves where possible. This is an important opportunity to develop and act on evidence-based recommendations to further support parents and staff in these incredibly distressing situations.”