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.

Suffering is an important concept in medical practice, but it can be hard to be certain just what suffering is. This is amplified in paediatric practice when it can be hard to know when a child is suffering, especially if that child is a newborn, is pre-verbal or has severe developmental delay. In this episode we explore a new account of suffering that helps clinicians towards a consistent approach to the sick child and their family.

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

Dr Georgina Hall, Clinical Ethicist - Children’s Bioethics Centre 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 was first defined in the nursing literature (Jameton, 1984) as "the experience of knowing the right thing to do while being in a situation in which it is nearly impossible to do it". This was seen as a departure from the somewhat academic philosophical concepts of bioethical principles of the time by placing value on emotions and compassion in guiding moral action. Since then, there has been considerable work in unpacking the elements of moral distress and thinking about the implications for staff and healthcare systems and, importantly, how we might go about tackling the problem.

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.

Music as a therapeutic intervention is often used to transcend deficits and medical acuity, shifting instead to a strengths-based approach. Here, moments of joy are celebrated, and even the smallest positive responses offer parents an opportunity to connect with their child beyond the diagnosis. But is it ethical to foster hope in the face of end-of-life care? Music therapist Jack Thomas relates a life-changing story––with a song in his heart.

Presenter: Jack Thomas, Music Therapist, The Royal Children's Hospital, Melbourne. Host: Prof John Massie, Children's Bioethics Centre, RCH 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

Bioethics, as an applied form of ethics, is concerned with clinical problems and decision-making. This makes sense because healthcare takes action to resolve challenges in preventing and treating illness. But by focusing on dilemmas and moral distress, we sometimes lose sight of patients––and their stories––and fail to see the moral richness that permeates illness, dying and death, and by association, the moral richness of life. This does a disservice to morality, as it’s often these small epiphanies that make healthcare––and ethics––so meaningful.

Presenter: Prof Ian Kerridge, Haematologist/Bone Marrow Transplant physician, Royal Northshore Hospital, Professor of Bioethics and Medicine, University of Sydney. Host: Prof John Massie, Children's Bioethics Centre, The Royal Children's Hospital, Melbourne.

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.

Dr Daniel Wright explores innovation in the light of gender affirming care for children with gender dysphoria. Daniel shows us how philosophy can help de-pathologise issues such as gender dysphoria, yet still leave room for treatment, innovative or routine. Speaker: Daniel Wright, Clinical Psychologist and PhD candidate, Children's Bioethics Centre. Host: Professor John Massie, Children's Bioethics Centre, The Royal Children's Hospital Melbourne.