Essential Ethics: Recent Episodes
The Royal Children's Hospital, Melbourne
Essential Ethics, from the Children’s Bioethics Centre at The Royal Children’s Hospital (Melbourne, Australia) presents discussion of challenging cases that come up when treating children. Hear the most up-to-date thinking and draw knowledge from the ethics toolkit. After a decade or more of experience our team of world-recognised ethicists take on the hardest cases. Essential Ethics is informative, interesting and always relevant. Hosted by Professor John Massie, a clinician and bioethicist at The Royal Children’s Hospital, Melbourne.
A hypothetical case discussion sponsored by the Friends of the Children's Bioethics Centre Auxiliary. "Nadia" is a 15-year-old girl with cystic fibrosis who needs a permanent intravenous infusion device to facilitate her treatment. Her parents, of Indian heritage, are unwilling to agree to this. They are planning a family gathering and arranged marriage for Nadia and the infusion device will interfere with their plans. A panel of experts from the CBC, Profs Lynn Gillam, Clare Delany and Dr Georgina Hall, supported by a virtual panel from the RCH Clinical Ethics Response Group, wrestle with the case, which is full of ethical ‘heat’ and cultural sensitivities.
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.
An expert panel explores the issues that arise when young people request vaccination for COVID-19 against the wishes of their parents. Dr Veronica Cerrati presents a case of a 14-year-old girl with type-1 diabetes requesting a COVID vaccine from her GP. Associate Prof Margie Danchin explains the medical benefits and risks and clinical approach she would take with a young person in this situation. Prof John Tobin explains how this sits within a human rights framework, drawing on the UN Convention on the Rights of the Child. Prof Paula O’Brien considers the legal aspects, including Gillick competence and the varying laws and policies in the different jurisdictions of Australia. It is far from a straightforward picture, but in the end, a decision by the GP has to be made. Session chair: Prof John Massie, Clinical Director, Children's Bioethics Centre, RCH.
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.
Professor Jodi Halpern introduces the audience to empathic curiosity, a concept that she has developed through her work in psychiatry, paediatrics and clinical ethics. Prof Halpern explains how sympathy may come naturally to many clinicians but is often an unhelpful response to difficulties that patients and parents of sick children face. What is needed is an empathic response that engages the patient and parent and supports the medical decisions that need to be made. Prof Halpern offers a series of steps to operationalise empathic curiosity and build a therapeutic alliance, even if there has been disagreement. Host: Prof John Massie, Clinical Director, Children's Bioethics Centre, The Royal Children's Hospital, Melbourne. Presenter: Prof Jodi Halpern MD, PhD, Chancellor’s Chair and Professor of Bioethics at UC Berkeley.
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.
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.
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.
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.
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
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?
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.
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 most?The session is moderated from London by Dr Sarah Aylett - Clinical Ethics Service and Neurologist, Great Ormond Street Hospital for Children, London and from Melbourne by Prof Lynn Gillam, Children's Bioethics Centre, RCH.
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 clinical needs of sick children and the imperative to 'do something', against the scarcity of solid scientific evidence about proposed treatments. The session is moderated by Prof Lynn Gillam, Children's Bioethics Centre, RCH.
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 patients threaten staff.
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 unjustified coercion.
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 presents the case against challenge trials, on the basis that children are the wrong candidates, given their low infection and mortality rates.
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.
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 Royal Children's Hospital, Melbourne (RCH), Co-founder of the Hush Foundation and Gathering of Kindness; and Prof Lynn Gillam, Academic Director of the RCH Children’s Bioethics Centre and Professor, University of Melbourne School of Population and Global Health.
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 Children's Hospital, Melbourne (RCH), and Prof Clare Delany, Senior Ethicist with the Children’s Bioethics Centre at RCH and Professor at the University of Melbourne School of Population and Global Health.
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, decision-makers for their children and acts to preserve the parent-child-doctor relationship. Host: Prof John Massie, Clinical Director, Children’s Bioethics Centre, RCH. Guest: Prof Lynn Gillam, Academic Director, Children’s Bioethics Centre, RCH, and Professor, University of Melbourne School of Population and Global Health.
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, RCH.Guest: Prof Doug Diekema, Treuman Katz Center for Pediatric Bioethics, University of Washington.
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 Bioethics Centre. Guest: Dr Ros McDougall, Senior Lecturer, University of Melbourne School of Population and Global Health.
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 Massie, Clinical Director, Children’s Bioethics Centre. Guest: Prof Lynn Gillam: Academic Director, RCH Children’s Bioethics Centre and Professor, University of Melbourne School of Population and Global Health.
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.
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.
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 2019 National Children's Bioethics Conference at RCH.
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, Dieticians, Nutrition and Food Services, RCH. Commentators: Ms Bernadette O’Connor, Director, Allied Health, RCH and Prof John Massie, Clinical Lead, Children’s Bioethics Centre, RCH.
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.
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.
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 for your new baby, but why weren't you offered the test? To help us consider the ethics of this, John Massie is joined by Ainsley Newson, Professor of Bioethics, University of Sydney and Deputy Director at Sydney Health Ethics, Sydney School of Public Health.
How do we ration limited healthcare resources without discriminating against people with disabilities? Host, Professor John Massie enlists Dr Giuliana Antolovich, a paediatrician working in Developmental Medicine at the RCH, to shed light on this important topic. Zooming in to the conversation is ethicist Professor Lynn Gillam.
A 5-year-old boy is brought to the ED with high fever, lethargy, cough and breathing difficulties. There is no contact with a COVID-19 case or overseas travel. The boy has moderately severe autistic spectrum disorder associated with a fear of medical procedures. His mother refuses a COVID-19 nasal and throat swab on the basis that it will severely upset him and set his ASD treatment back. Is it acceptable to accede to mother’s wishes and not do a COVID swab? Professor John Massie navigates the issue with Professor Lynn Gillam.
The SARS-Co2 coronavirus has caused the pandemic that many suspected would come, but which has still caught health services by surprise. Medical resources are never infinite, even in wealthy countries with well-developed healthcare systems like Australia. Host, Professor John Massie explores with guest, Professor Lynn Gillam some of the ethical issues around allocation of resources to children during the COVID19 pandemic.
The COVID-19 pandemic has created pressure on healthcare services and healthcare workers like never before. Essential Ethics host Professor John Massie is joined by Prof Lynn Gillam and Prof Clare Delany of the Children’s Bioethics Centre to consider the ethical principles that should be the bedrock of the institutional and individual healthcare worker response to the pandemic.
When parents advocated for early leg amputation and prosthesis fitting for their child, rather than go through a lengthy series of leg salvaging operations and rehabilitation, orthopaedic surgeon Dr Chris Harris faced an ethical dilemma. Should he acquiesce to the parents' request? Or should he steer them to a pathway they don’t want to take? Thank goodness we have Prof Lynn Gillam back in the chair to guide us through the ethical principles and find a way forward that everyone can be satisfied with.
Left ventricular assist devices have made it possible to keep children with heart failure alive while waiting for a heart transplant, yet at a significant risk of strokes and prolonged hospitalisation. But what do you do when the number of children waiting for a heart transplant is much greater than the number of hearts that become available? Dr Jacob Mathew can deal with almost any cardiac emergency, but this one troubles him the most. Professor Lynn Gillam helps to find a clear path through the angst and emotion that these cases throw up. Hosted by Professor John Massie.
Jade is a 14-year-old girl with a high grade medulloblastoma (brain tumour). She presented with headaches but no evidence of neurological impairment. She is an otherwise healthy year eight student. Primary surgical resection with post-operative radiotherapy is the recommended treatment. There is a 30 percent chance of responding. But it's likely she will have side-effects (intellectual disability, seizures and/or problems using her arms and legs), and still die two to three years later. Without treatment she will die within six months. Her parents wish to try prayer and natural therapies, including pursuing options overseas.Is it ethically acceptable for Jade’s parents to refuse standard therapy and pursue prayer and natural therapies?Balancing quality of life and length of life is a tightrope that paediatric oncologist Dr Kanika Bhatia treads often. In this podcast she is supported by Dr Molly Williams who is also an oncologist and palliative care physician and for whom bioethics is a lived experience. Professor John Massie hosts the discussion.
Your patient is a young adult, but still under 18 years. He doesn’t want cancer treatment that will affect his appearance. But this will put him at risk of a less certain cure. Dr Diane Hanna is not fazed as to what to say, but how to make the best outcome happen is her dilemma. Professor Clare Delaney helps us consider the rights of the child to make a decision about their healthcare, but also, when we might have to override their decision.
What do you do when parents demand investigations and treatments for their children, that you think are unnecessary? Dr Giuliana Antolovich, experienced paediatrician and straight-talker, along with clear-thinking academic director Professor Lynn Gillam, tackle this one with host, Professor John Massie.