Webinar 2 explored ‘best interests’ decisions in healthcare that are taken for and with children and young people who are under the age of 18 years. The speakers were:

• Dawn Ritchie, Associate Professor in Nursing Children and Young People, based at the University of Nottingham
• Steph Nimmo is a writer, speaker and campaigner with lived experience of being a parent advocate to a medically complex child
• Imogen Goold, Professor of Medical Law at the University of Oxford
• Pam Cairns, a consultant in neonatal intensive care in Bristol, where she also chairs the local clinical ethics advisory group. Pam is also undertaking a PhD at the Centre for Ethics in Medicine.

Webinar summary, written by Martha Scanlon, BABEL PhD student

The second webinar in the Spring into BABEL Webinar Series featured four presentations focused on the best interests of the child patient. The presentations provided a fascinating range of perspectives – parents and clinicians, legal and ethical – on the complex issue of best interests decision-making in relation to young children.

The first speaker was Dawn Ritchie, who is an Associate Professor in Nursing Children and Young People, based at the University of Nottingham. Dawn was presenting on ‘The Primacy Project: Making Difficult Decisions in the Paediatric Intensive Care Unit (PICU)’, which was an 18-month qualitative case study exploring how the construct of best interests is understood when making difficult decisions around life-sustaining medical treatment in the PICU.

Dawn’s presentation focused on the findings relating to the ‘multifarious dynamics of parental involvement’, which was found to occur along a continuum which could be likened to an adapted version of Hart’s ‘ladder of participation’. Dawn’s presentation also discussed the project’s findings in relation to best interests, discussing the indeterminacy of the concept, in that not only is it both interpretative and subjective, so determining a child’s best interests is inherently abstract, but also because evaluating treatment options must be based on each child’s individual circumstances. Best interests is a construct that provides guiding principles, which allows for good enough/better/best decision-making, but Dawn argued that its inherent flexibility is both a strength and a vulnerability, because it offers little practical guidance and is open to manipulation.

Summarising the presentation, Dawn argued that the concept of best interests is illusory, and that the project’s findings illuminate the complexity and shifting nature of negotiations which underpin decisions about best interests affecting critically ill children.

The second speaker, Steph Nimmo, is a writer, speaker and campaigner with lived experience of being a parent advocate to a medically complex child. Her youngest daughter Daisy was born prematurely and soon after diagnosed with a rare genetic disease and intestinal failure. She wrote about her experiences on an award-winning blog, and has written for many mainstream publications. She is the author of two best-selling books, Goodbye Daisy and Was this in the plan?, and a third book, Anything For My Child, is forthcoming.

In her talk ‘Was this in the plan?’, Steph discussed her experience of having difficult conversations about end-of-life planning and not always being included in decisions about Daisy’s care. When speaking about best interests, Steph highlighted how the conversation automatically becomes emotionally charged as parents are presented with a binary choice, which could be whether their child lives or dies, and it sets up a dialogue that is rooted in conflict.

Steph closed her talk with three key takeaway messages for practitioners:

1. Think about how you would feel if you were standing in her shoes.
2. Don’t call her mum! You humanise people when you call them by their name (Steph has written about this here).
3. It’s okay to say that you don’t know and can in fact be very empowering for parents to hear, which can also stop conflicts developing.

The third speaker, Imogen Goold, is a Professor of Medical Law at the University of Oxford. Her presentation, ‘Medical Decision-Making for Young Children’, discussed the legal framework in which healthcare decisions are made with, for and about children and young people, looking at the current approach taken by the courts and discussing recent examples including high-profile legal cases like those of Charlie Gard, Alfie Evans, and Tafida Raqeeb. Imogen has co-edited two books about such decisions, one focusing on the complex legal case of Charlie Gard, and the other exploring different international perspectives on the issues arising.

As Imogen highlighted, the courts’ approach to determining best interests in these cases has not been without controversy. Imogen discussed the arguments for and against the alternative approach to best interests suggested in the Charlie Gard appeals, that of the serious risk of significant harm threshold. According to this approach, which was rejected by the courts, ‘parents are free to discharge parental responsibilities by making decisions in respect of their children unless the purported discharge thereof would cause their child significant harm.’ Imogen finished her talk with a brief discussion of why it may be useful to look at how other countries manage these situations, as there are relatively high levels of court involvement in disputes in England and Wales, which Imogen argued is demonstrative of a ‘system of conflict’.

The fourth and final speaker was Pam Cairns. Pam is a consultant in neonatal intensive care in Bristol, where she also chairs the local Clinical Ethics Advisory Group. Pam is also undertaking a PhD at the Centre for Ethics in Medicine. Her presentation, ‘Best Interest in the child – view of the clinician’, reflected on ‘best interests’ decisions for young children, from her perspective as a healthcare professional and researcher.

Pam discussed how best interests decisions involving children sometimes come to the Clinical Ethics Advisory Group for its advice. Pam also presented some of the findings from her Wellcome Trust funded PhD research, which explores decision-making for infants with intestinal failure, combines survey and interview methodology with ethical analysis to explore how these decisions are made, and aims to develop recommendations for how they should be made. The question of who actually makes the decision and who sees themselves as the decision maker was discussed. Pam presented some of her qualitative findings from her interviews with clinicians and parents, which demonstrate how best interests is applied much more relationally in this context, despite being conceived of as an individualistic concept. Pam’s findings suggest how, although best interests can be somewhat useful in practice, it does have its limitations.

Although the four talks were approaching the theme from very different standpoints, there were several common themes and points of discussion among the presentations, including how to manage conflict, the role of values when determining best interests, particularly in judgments about quality of life, shared decision-making, and the zone of parental discretion. Each presentation and the experiences and research they discussed provided unique and valuable insights into these important areas.