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 ‘...
Feb 09, 2022•22 min•Season 1Ep. 39
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 ‘de...
Feb 02, 2022•28 min•Season 1Ep. 38
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?
Jan 26, 2022•25 min•Season 1Ep. 37
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 responsi...
Jan 19, 2022•23 min•Season 1Ep. 36
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 deliv...
Jan 13, 2022•1 hr 35 min•Season 1Ep. 35
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 co...
Dec 19, 2021•1 hr 2 min•Season 1Ep. 34
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-o...
Dec 12, 2021•48 min•Season 1Ep. 33
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 adolescen...
Dec 05, 2021•44 min•Season 1Ep. 32
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...
Nov 28, 2021•48 min•Season 1Ep. 31
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....
Nov 21, 2021•46 min•Season 1Ep. 30
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 rig...
Nov 15, 2021•44 min•Season 1Ep. 29
Speakers: Prof David Archard - Chair Nuffield Council on Bioethics, UK and Dr Joe Brierley - Chair, Clinical Ethics Service and Intensivist, Great Ormond Street Hospital for Children, London. This session is a fascinating debate in which Prof Archard advocates for the immediate needs of the sick child in intensive care now, while Dr Brierley insists that medical care for children, even if they are desperately sick, can only advance if we collect and publish data. Whose argument sways you the mos...
Nov 04, 2021•40 min•Season 1Ep. 28
Speakers: Prof David Archard - Chair Nuffield Council on Bioethics, UK; Dr Joe Brierley - Chair, Clinical Ethics Service and Intensivist, Great Ormond Street Hospital for Children, London; Dr Sarah Aylett - Clinical Ethics Service and Neurologist Great Ormond Street Hospital for Children, London. In this session we discuss how innovative therapies should be considered for use in the COVID-19 pandemic. The ethics team from GOSH London and the Nuffield Council on Bioethics take into account the cl...
Nov 02, 2021•32 min•Season 1Ep. 27
Speakers: Professors Lynn Gillam and Clare Delany, Children’s Bioethics Centre, RCH and Associate Professor Helen Irving, Clinical Lead for Children Health Ethics and Law, Queensland Children’s Hospital. In this session, the initial consideration is safety to hospital staff in the COVID-19 pandemic, and what might constitute acceptable risk to those staff of becoming infected at work. This opens the way for a more general discussion about an ethical approach to staff safety when parents or patie...
Aug 26, 2021•43 min•Season 1Ep. 26
Speakers: Professors Dominic Wilkinson and Julian Savulescu, from the Uehiro Centre for Practical Ethics at Oxford University, UK. Moderator: Professor David Isaacs, Clinician-ethicist and infectious diseases physician, Children’s Hospital, Westmead, Australia. In this session, Prof Savulescu accepts the premise that a safe COVID-19 vaccine is developed and brings a consequentialist approach to justify mandatory vaccination. Prof Wilkinson rebuts this, indicating mandatory vaccination is unjusti...
Aug 25, 2021•39 min•Season 1Ep. 25
Speakers: Professor Dominic Wilkinson and Professor Julian Savulescu, both from the Uehiro Centre for Practical Ethics at Oxford University, UK. Moderator: Professor David Isaacs, Clinician-ethicist and infectious diseases physician from the Children’s Hospital, Westmead, Australia. In this session Prof Wilkinson presents arguments in favour of COVID-19 challenge trials, arguing that we have an obligation to know all we can, and that such trials would guide vaccination research. Prof Savulescu p...
Aug 24, 2021•45 min•Season 1Ep. 24
Professor John Lantos, Bioethicist and Neonatologist at Mercy Hospital for Children, Kansas City Missouri considers the many ethical dilemmas in clinical care raised by the COVID-19 pandemic and how we can learn from these for post-pandemic times. This is a far-ranging session considering surge management, staff infection, innovative therapies and research.
Aug 23, 2021•48 min•Season 1Ep. 23
The Ethics Toolkit is a series within Essential Ethics designed to give clinicians a clear understanding of the tools that bioethicists use to think through complex problems. In this episode we explore the ethical foundations of child and family centred care. The conversation considers the obligations of healthcare providers to involve patients and families in their own healthcare and in designing healthcare systems. Host, Prof John Massie, is joined by: Prof Catherine Crock AM, physician at The...
Dec 23, 2020•45 min•Season 1Ep. 22
The Ethics Toolkit is a series within Essential Ethics designed to give clinicians a clear understanding of the tools that bioethicists use to think through complex problems. In this episode we discuss what shared decision-making means and consider the ethical principles that underpin it. We then consider how this should include children and adolescents as emerging decision-makers. Host, Prof John Massie, is joined by Dr Giuliana Antolovich, Paediatrician with Developmental Medicine at The Royal...
Dec 17, 2020•38 min•Season 1Ep. 21
The Ethics Toolkit is a series within Essential Ethics designed to give clinicians a clear understanding of the tools that bioethicists use to think through complex problems. This episode looks at the Zone of Parental Discretion (ZPD) which is a protected space in which parents can make medical decisions for their children that may not be optimal (best interests) but are not substantially harmful (Harm Principle) to the interests of their child. It recognises parents as natural, and legal, decis...
Dec 11, 2020•41 min•Season 1Ep. 20
The Ethics Toolkit is a series within Essential Ethics designed to give clinicians a clear understanding of the tools that bioethicists use to think through complex problems. In this episode Prof Doug Diekema explains the origins of the Harm Principle and how it sets a threshold for state intervention when children risk being harmed. Prof Diekema outlines the necessary conditions that must be met under the Harm Principle. Host: Prof John Massie, Clinical Director, Children’s Bioethics Centre, RC...
Dec 04, 2020•39 min•Season 1Ep. 19
The Ethics Toolkit is a series within Essential Ethics designed to give clinicians a clear understanding of the tools that bioethicists use to think through complex problems. This episode examines different ways to consider bioethics, beyond the commonly used framework of the four principles. Virtue ethics, consequentialism and rule-based ethics all get a road test to see how they might add value to bioethical discourse in various situations. Host: Prof John Massie, Clinical Director, Children’s...
Nov 27, 2020•30 min•Season 1Ep. 18
The Ethics Toolkit is a series within Essential Ethics designed to give clinicians a clear understanding of the tools that bioethicists use to think through complex problems. In this episode we explore the origin of the four principles of bioethics, namely, respect for autonomy, beneficence, non-maleficence and justice. The four principles provide an easy framework for ethical analysis and have gained prominence as the main framework that is used for clinical ethics consultation. Host: Prof John...
Nov 20, 2020•37 min•Season 1Ep. 17
In the closing plenary session of the 2019 National Children's Bioethics Conference, two senior clinical ethicists lead a discussion on the ethical dimensions of respect: Professor Lynn Gillam and Professor Clare Delany, both from the Children’s Bioethics Centre at The Royal Children's Hospital, Melbourne.
Nov 16, 2020•41 min•Season 1Ep. 16
What happens when the medical team and parents have divergent views about the best interests of the infant? Dr Sid Vemuri, Consultant in Paediatric Palliative Medicine, Victorian Paediatric Palliative Care Program, and Dr Bennett Sheridan, Paediatric Cardiologist, Cardiac Intensivist, RCH, and Nurse Emelina Finnegan present a case of an infant with an inoperable congenital heart malformation whose life is prolonged by prostin infusion.
Nov 05, 2020•26 min•Season 1Ep. 15
Sometimes newborn infants have multiple congenital abnormalities. Each of them may be treatable on its own. However, the overall prognosis can mean that it's unclear whether embarking on active treatment is in the best interests of the child. This is the ‘twilight zone’ where the gap between harm and best interests is hard to determine. The twilight zone can take its toll on parents and clinicians, as Dr Trisha Prentice, Neonatologist at The Royal Children's Hospital, Melbourne explained at the ...
Oct 30, 2020•26 min•Season 1Ep. 14
The RCH Nutrition and Food Services Team presents the risks and benefits of blended food for tube feeding of children. It's an option that's often practised by parents but not endorsed by the RCH home enteral nutrition program. This is followed by a lively discussion considering the ethically important issues of patient (parent) autonomy and fair process (justice) at RCH. Presenters: Dr Heather Gilbertson, Manager, Nutrition and Food Services, RCH; Ms Keryn Coster and Ms Rachael Martin, Dieticia...
Sep 01, 2020•47 min•Season 1Ep. 13
Professor Avraham Steinberg, from the Shaare Zedek Medical Center in Israel, presents this keynote talk given at the 2019 National Paediatric Bioethics Conference held at The Royal Children's Hospital, Melbourne. Combining warmth and honesty with wisdom and pragmatism, he navigates medical ethics across the ages and cultures of modern Israel.
Sep 01, 2020•1 hr 3 min•Season 1Ep. 12
Before the Covid crisis curtailed travel, Professor John Massie roped in an expert for the US take on screening for inherited diseases. Recorded in Seattle in 2019, here he is face to face with Professor Benjamin Wilfond MD, Director of the Treuman Katz Center for Pediatric Bioethics, University of Washington, and Pulmonologist at Seattle Children’s Hospital.
Jul 23, 2020•41 min•Season 1Ep. 11
Just imagine: You had testing in pregnancy to make sure everything was OK with the baby. You had Down syndrome screening and foetal ultrasounds. You even asked your obstetrician, “are there any other tests we could do to have a healthy baby?” You were told, "that’s it". Only that's not it. Turns out, there's a test for spinal muscular atrophy. And your baby is born with SMA. You learn that you and your partner are carriers of the gene mutation that causes SMA. It doesn't change the love you have...
May 28, 2020•35 min•Season 1Ep. 10
