Essential Ethics

This session explores the challenges of respecting a child’s privacy in the age of social media. The phenomenon of ‘sharenting’, whereby parents share news and images of their child on social media is becoming increasingly common among families where children have chronic illness and disability, and some families manage a public social media account dedicated to their child’s medical journey. This highlights a clash between the rights of parents and children: does the parent’s right and responsibility to manage their child’s care override the child’s right to privacy and confidentiality as a patient? Our speaker, Elise Burn from Queensland Children’s Hospital Centre for Children’s Health Ethics and Law, won the Patron’s Prize for the best conference paper.

Professor Douglas S. Diekema (Director of Education for the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Research Institute) opens the Conference by considering the ethical underpinning of the conference theme, ‘Deciding with Children’. Deciding with Children is more than a vague abstraction or aspirational goal of children’s healthcare workers. Prof Diekema demonstrates that Deciding with Children matters to the well-being of children and is a vital part of healthcare delivery. He builds on this foundation, using his clinical experience, to consider how best to authentically involve children in healthcare decisions. This Keynote session is named in honour of the recent Clinical Director of the Children's Bioethics Centre, Associate Professor Jill Sewell.

We explore ways to involve children and young people when managing their chronic condition, using type 1 diabetes as an example. How do the small decisions that respect the child’s preferences and values build towards an independent decision-maker? Given the level of responsibility that parents feel for the outcomes of their child’s disease control, what role does a parent have in deciding with children? We also consider the clinician as holder of special knowledge about diabetes, and also as coach for the child and the parents to develop the independent decision-maker. Host: Prof John Massie. Guests: Dr Michele O’Connell, Endocrinologist at RCH; and Prof Lynn Gillam, Children's Bioethics Centre, RCH.

This session considers what deciding with children looks like when a child has cancer. In this one we try to operationalise deciding with children. We explore ways to engage younger children in their medical decision-making and consider what types of decisions children with cancer can be encouraged to make for themselves. How serious would a decision need to be for the treating team to go against the child’s known wishes? How would you deliver this decision to your patient? We consider if sub-optimal medical treatments are ever acceptable when they're preferred by the child. Host: Prof John Massie. Guests: Dr Molly Williams, Paediatrician, Oncology & Palliative Care, RCH and Jayne Harrison, Clinical Nurse Specialist, RCH Oncology.

This episode explores how clinicians currently involve adolescents in their medical decision making, and how they should involve them. We unpack the tricky transitory space that exists between deciding for younger children, to deciding with these young people who have an increased capacity for reasoning, weighing choices and decision-making. We also consider how far paediatricians should go to promote decision making with adolescents. Host: Prof John Massie. Guests: Dr Mick Creati, RCH adolescent physician and Prof Lynn Gillam, Children's Bioethics Centre, RCH.

This time focusing on involving young children and early adolescents in medical decision making, we explore the transition from deciding for children to deciding with children. We consider child development and neurobiology, what things are important to children, what we can offer in terms of choices and what to do if we have to override a child’s preference or decision. We also explore decision-making for children with developmental issues, such as attention-deficit hyperactivity disorder (ADHD) and autistic spectrum disorder (ASD). Host: Prof John Massie. Guests: Dr Daryl Efron, RCH general paediatrician, and Prof Lynn Gillam, Children's Bioethics Centre, RCH.

We analyse the Gillick decision from the UK with regard to adolescent medical decision-making and the concept of the ‘mature minor.’ We discuss the legal aspects of ‘Gillick competence’ and consider the limitations of the Gillick decision in ethical and practical terms. Finally, we consider alternative framings of adolescent medical decision-making. Host: Prof John Massie. Guests: Annabelle Mann, RCH General Counsel, Prof Lynn Gillam and Prof Clare Delany, Children's Bioethics Centre, RCH.

In this podcast we explore the ethical underpinnings of deciding with children when providing medical care. We recognise that children of all ages have varying levels of capacity to understand and participate in medical decisions that affect their own bodies. We cover the following ethical principles in our exploration of deciding with children: the intrinsic and instrumental value of asking and considering the child’s view; respect for personhood, bodily sovereignty and liberty; the child’s right to a view; truth-telling and children’s best interests. Host: Prof John Massie. Guests: Prof Lynn Gillam and Prof Clare Delany, Children's Bioethics Centre, RCH.