Essential Ethics

Genomic sequencing in newborn screening is an ethical minefield. Newborn screening started in the 1960s, initially involving only one condition: phenylketonuria. Subsequently, other diseases were added to newborn screening programs. However, newborn screening panels have evolved without true consensus of the most suitable diseases to include. Advances in genomic sequencing technologies mean that it’s now possible to test for thousands of diseases from a single newborn blood spot. But just because this technology is available, does that mean we should use it?

Advocacy in healthcare is commonly characterised by ‘speaking-up’ on behalf of a patient and their family to ensure their preferences and values are considered and the best possible care is delivered. In nursing, advocacy is a professional and ethical responsibility. But what factors are at work when nurses feel the need to advocate? Are there limits to patient advocacy? Is the primary responsibility to represent patient/family wishes even when a nurse believes this is not the best clinical option? Are we advocating for what the patient/family wants or what the patient/family needs? Host: Prof John Massie, Children’s Bioethics Centre, RCH. Guests: Prof Lynn Gillam, Clinical Ethicist, RCH, Prof Fiona Newall, Director Nursing Research and Education, RCH, and Ms Eve Inglis, Unit Manager, Wallaby Ward, RCH.

In any paediatric hospital on any given day children are held in order to perform clinical procedures such as taking bloods or X-rays or putting in an intravenous line for fluids. This is done for the safety of all involved and to enable clinically necessary interventions to be undertaken. However, we know that holding children against their will can cause both short and long term harm. We discuss these competing ethical considerations and offer practical strategies to ensure that we approach paediatric procedures in an ethically mindful way. Host: Prof John Massie, Children’s Bioethics Centre, RCH. Guests: Dr Jenny O’Neill, Clinical Nurse Consultant, Bioethics, RCH, Ms Emily Cull, Clinical Nurse Consultant, Comfort Kids, RCH, and Ms Catherine Wood, Clinical Nurse Consultant, Complex Care.

Involving the family in the care of a child in hospital is a cornerstone of good paediatric practice. This is realised by encouraging parental presence and participation in care in hospital, and through open communication and shared decision making between clinicians, parents, and the child where appropriate. However, the community and hospital restrictions which came into force during the COVID-19 pandemic disrupted the usual practice of family-centred care. How did paediatric nurses navigate this? What ethical dilemmas resulted and how were these resolved or mitigated? Host: Prof John Massie, Clinical Bioethics Centre RCH. Guests: Ms Alie Barlow, Clinical Nurse Co-ordinator, Children’s Cancer Centre RCH, and Dr Jenny O’Neill, Clinical Nurse Consultant Bioethics, RCH.

Moral distress occurs when an ethical wrong is perceived to be occurring, or has occurred, which a clinician feels powerless to change. We discuss a hypothetical clinical case to explore the experience of moral distress in nursing. How do you recognise moral distress, and, more importantly, what can you do about it? Host: Prof John Massie, Clinical Bioethics Centre, RCH. Guests: Ms Peisha Johnson, Clinical Nurse Specialist at RCH, and Prof Clare Delany, Clinical Bioethics Centre, RCH.

In paediatric care, nurses are faced with everyday ethical decisions that impact them and their patients. Whether it’s resolving conflicting views about treatment, disclosing diagnostic results to parents, or determining care priorities, all test personal and professional values. An understanding of ethics can help navigate these often murky waters. We explore some common scenarios and reflect on the barriers preventing nurses from raising ethical issues. Host: Prof John Massie, Clinical Bioethics Centre, RCH. Guests: Ms Ingrid Schulz, Clinical Nurse Consultant at RCH, and Prof Lynn Gillam, Clinical Bioethics Centre, RCH

The session considers some case examples where ‘deciding with children’ isn’t ethically straightforward. When parents exclude an adolescent from being involved, or when parents disagree with their child’s views, clinicians must decide when and how to advocate for a child to decide. When and why ought they to defer to the parent’s views?

Professor Lynn Gillam (Academic Director of the Children’s Bioethics Centre, The Royal Children’s Hospital) in discussion with Professor Douglas Diekema (Physician and Director of Education, Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital, USA) and Professor Lainie Friedman Ross (Professor of Clinical Medical Ethics and Professor, Departments of Pediatrics, Medicine, Surgery and the College, University of Chicago).

In part 3 of the conference wrap-up, we hear a fascinating concluding presentation from Professor Clare Delany, Clinical Ethicist at The Royal Children’s Hospital and Peter McCallum Cancer Centre. Clare challenges the audience to consider the child’s ability to participate in their medical decision-making in the context of socio-cultural theory of cognitive development. She sets the presentation in a fascinating historical and philosophical landscape. Her reflections on the clinician’s role in ‘deciding with children’ round out the conference nicely.

Professor Lynn Gillam, Academic Director of the Children’s Bioethics Centre at The Royal Children’s Hospital explores what decision-making really is and what it looks like – the various models of shared decision-making that are often used in the healthcare context, who shares the authority to make medical decisions for children, and when does the child’s voice count? With her usual clarity of thought, Lynn wraps up the conference presentations that have taken us on a journey to discover what ‘deciding’ means in ‘deciding with children’.

Clinical Director of the Children’s Bioethics Centre, Professor John Massie, summarises some of the key messages and critical reflections on how clinicians can decide ‘with’ children in the paediatric environment. What does it really mean to seek and consider the child’s view, and what happens when you’ve asked them, and then don’t do what they want?