Essential Ethics

Caring for children with severe neurological impairments presents multiple challenges. As medical technology advances, the choices for clinicians and families grow in complexity. From life-prolonging interventions to deeply personal decisions, tensions and disagreements often arise, with emotions running high. In this episode, we explore the ethical considerations across this high-stakes area of paediatric care and offer a practical toolkit to help clinicians navigate difficult decisions with confidence, compassion and clarity. Host: Prof John Massie Guests: Dr Zoë McCallum, Paediatrician, Department of Neurodevelopment & Disability at The Royal Children's Hospital Melbourne . Clinical Associate Professor Giuliana Antolovich, Paediatrician and Clinical Stream Leader, Physical Disability, Neurodevelopment & Disability at The Royal Children's Hospital, Melbourne.

Tyler Tate has co-authored a wonderful paper, "Love Your Patient", which explores the lost heart of medicine that is now driven by scientific and financial imperatives. In this podcast, Tyler explains his paper and makes a call to all clinicians to orient their practice towards regarding their patients as people and thereby accept the obligation to truly care for them. To "love your patient" is not just a riff on Jesus' injunction to "love thy neighbour as thyself" but a deep philosophical enquiry that should animate clinical practice. Host: Prof John Massie Guests: Clin Assoc Prof Tyler Tate, Palliative Care Physician at Lucille Packard Children’s Hospital, California and the Center for Biomedical Ethics at Stanford University

Moral distress is a pervasive phenomenon in healthcare and contributes to healthcare worker burnout, turnover, and withdrawal from patient care. Dr Morley provides a brief overview of the concept of moral distress and, through a series of cases, disentangles stakeholders' perspectives and concepts related to moral distress. She argues that moral compromise is central to alleviating the negative effects of moral distress and successful moral compromise requires a willingness to understand others' perspectives and values. Presenter: Dr Georgina Morley, Nurse Ethicist and Director of the Nursing Ethics Program at the Cleveland Clinic, Ohio, USA. Host: Prof John Massie, Children's Bioethics Centre, The Royal Children's Hospital, Melbourne.

Talking about stressful situations can give rise to euphemisms. Coded language can help smooth harsh realities or create a bond when it’s shared by a team. But in healthcare, when it stigmatises the patient, does it have the potential to undermine their quality of care? And if the patient overhears their clinicians referring to them in this way, how are they affected? Clinical Nurse Consultant Tania Ramos encounters a critical moment in her patient care experience. Presenter: Tania Ramos, Clinical Nurse Consultant, The Royal Children's Hospital, Melbourne. Host: Prof John Massie, Children's Bioethics Centre, RCH Melbourne. If this program has raised concerns for you or someone you know, the following services are available: Lifeline 13 11 14 or lifeline.org.au Kids Helpline 1800 551 800 or kidshelpline.com.au

Associate Professor Tom Connell speaks about the challenges faced by large children's hospitals with the availability of high cost new drugs. Speaker: Associate Professor Tom Connell, RCH Chief of Medicine. Host: Professor John Massie, Children's Bioethics Centre, The Royal Children's Hospital Melbourne.

One of Australia's leading clinical ethicists, Professor Ian Kerridge, brings together storytelling, clinical experience and philosophy to help us navigate a path through the complexity of innovation in health care. Speaker: Professor Ian Kerridge, haematologist and specialist in bone marrow transplantation, Royal North Shore Hospital, Sydney and Professor of Bioethics and Medicine, University of Sydney. Host: Professor John Massie, Children's Bioethics Centre, The Royal Children's Hospital Melbourne.

Parent-clinician conflict is a common reason that clinical ethicists become involved in children’s care. The genesis of the conflict is often quite early in the course of the child’s illness and the situation builds to a crisis when there is a difficult decision to be made. Clinicians and ethicists have a traditional way of considering the problem confronting the child. In this podcast Bry Moore and Ros McDougall offer a different lens through which to see the problem and, ideally, find a fresh way to consider the conflict and manage a path to resolution. Guests: Associate Professor Bryanna Moore, Dept of Bioethics & Health Humanities, University of Texas Medical Branch, USA, and Associate Professor Rosalind McDougall, Health Ethics at the Melbourne School of Population and Global Health, University of Melbourne. Host: Professor John Massie, Children's Bioethics Centre, The Royal Children's Hospital Melbourne.

Jack Southwell, a Social Worker at RCH, describes the moral environment when looking after a child left in the care of the hospital. He discusses the technical differences between abandonment and relinquishment but posits that there is no real difference for staff. The child left in hospital care poses ethical concerns for the child, the staff, the parents and, importantly, the relationship between them all. Jack examines the moral and psychological toll this relationship poses for staff. This presentation won the Patron's Prize for the best presentation at the 2022 conference. The session is hosted by RCH Children's Bioethics Centre Clinical Nurse Consultant, Dr Jenny O’Neill.

Haematopoietic stem cell (HSC) transplantation has become the standard treatment for a range of diseases in children and adults. Children, sometimes as young as six months of age may be asked to act as HSC donors, usually for their siblings. This is because siblings are most likely to be an ‘HLA match’. In this episode we explore the ethical issues when clinical teams and parents ask for children to be bone-marrow or peripheral blood stem cell donors for a sick sibling. Host: Prof John Massie, RCH. Guest: A/Prof Michael Marks, RCH senior paediatrician and donor advocate. Ethicist: Sharon Feldman, clinical ethicist, Children’s Bioethics Centre, RCH.

In the clinical care of children who have a disability, the processes of deciding with children can present different challenges. Children who have a disability may have limited ability to understand the decision to be made or difficulties communicating their preferences. In this episode, paediatrician Dr Giuliana Antolovich reorientates us to misunderstandings about disability which are often created by preconceived notions of what children with disabilities can do. She challenges us to centre the child in the consultation, listen carefully to their preferences and values, and include these in medical decisions that will affect the child. This approach is respectful to the child and opens a rich and surprising dialogue with them and their families. Host: Prof John Massie. Guest: Dr Giuliana Antolovich. Ethicist: A/Prof Ros McDougall.

In paediatric practice, decision-making for children gradually shifts from parents making all the decisions for their child, in collaboration with the child’s doctors, to the young person becoming more involved in their own decision-making. This shift, which is based on an emerging autonomy in the child, brings with it a concurrent need for parents and clinicians alike to step back and to listen to the child, as they develop capacity for holding views about their healthcare. The self-regarding nature of medical decisions generates a strong obligation for young people's views to be heard about what will be done to them. In this episode we explore the degree to which considering the views of the child on their medical treatment is a duty for clinicians, and how this obligation fits within the human rights discourse. Host: Prof John Massie. Guests: Prof David Archard & Prof John Tobin.

Practicing family centred care is considered best practice in paediatric clinical care, so why isn’t this widely adopted in paediatric research? The voices of experience include those of the children and families. Therefore, partnering with families in research should also be considered best practice. In this episode we explore this concept through an ethical lens – what are the benefits and challenges of engaging families in research? How do we honour the family experience? How do we ensure the important voices are heard? What do we need to be able to do this effectively? Host: Dr Jenny O’Neill, Clinical Nurse Consultant Bioethics, The Royal Children’s Hospital. Guests: Ms Hollie Feller, parent advocate, co-founder and Director of Usherkids Australia, and Project Officer at Genetic Support Network Victoria. Associate Professor Adrienne Harvey, Senior Research Fellow, Neurodisability and Rehabilitation, The Murdoch Children’s Research Institute. Ms Marijana Vanevski, Infection Flagship Program Manager and Project Manager for the National Low-Risk Febrile Neutropenia Program, The Murdoch Children’s Research Institute.

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.