Essential Ethics
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- 76
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- mehrmals pro Woche
- Letzte Folge
- 26. Juli 2026
Über den Podcast
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 takes 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.
Folgen 76
2025 National Paediatric Bioethics Conference: Ethics of children with rare diseases and the resulting disability participating in commercially sponsored advanced therapy clinical trials
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, research nurse coordinator Cat Wood from the Murdoch Children’s Research Institute explores the ethical …
Shownotes
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, research nurse coordinator Cat Wood from the Murdoch Children’s Research Institute explores the ethical challenges of advanced therapy clinical trials for children with rare genetic conditions. Focusing on gene therapy trials for inherited epilepsy, she examines issues of consent, disability, risk, and equity in research involving children with severe neurodisability. Cat highlights the importance of meaningful engagement with patients and families, offering thoughtful insights into the ethical complexities of developing potentially life-changing therapies.
2025 National Paediatric Bioethics Conference: “The Squeaky Wheel,” an ethical approach to finding the balance between addressing parental concerns and managing excessive demands
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, Dr Ciara Earley explores the ethical challenges that arise when parental advocacy becomes increasingly …
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In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, Dr Ciara Earley explores the ethical challenges that arise when parental advocacy becomes increasingly demanding. Drawing on a real-world case, she examines how clinicians can balance responding to parental concerns with maintaining focus on the child’s best interests. Dr Earley presents a practical ethical framework to help healthcare teams navigate complex family dynamics while supporting both parents and clinicians in delivering high-quality paediatric care.
2025 National Paediatric Bioethics Conference: SickTok - Adolescent illness identity, privacy, and the role of the clinician
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, nurse Elise Burn explores the impact of social media on young people living with illness. In SickTok …
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In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, nurse Elise Burn explores the impact of social media on young people living with illness. In SickTok: Adolescent Illness, Identity, Privacy and the Role of the Clinician, she examines how online platforms can shape illness identity, influence health behaviours, and create new ethical challenges for clinicians. This thought-provoking presentation highlights the complexities of supporting adolescents in an increasingly digital world.
2025 National Paediatric Bioethics Conference: Talking with children about illness and dying
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, Emeritus Professor Myra Bluebond-Langner and Professor Lynn Gillam explore the ethical importance of talking …
Shownotes
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, Emeritus Professor Myra Bluebond-Langner and Professor Lynn Gillam explore the ethical importance of talking with children about serious illness and dying. Drawing on decades of research and clinical experience, they examine truth-telling, the changing role of parents, and how conversations can be centred on a child’s lived experience rather than age alone. Their presentations and discussion offer compassionate, practical insights into supporting children, families, and clinicians through some of healthcare’s most challenging conversations.
2025 National Paediatric Bioethics Conference: If you hit someone with a frying pan, it’s not cooking!!!
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, social workers Dani Gold and Anna Lucia examine the ethical consequences of how family violence is documented …
Shownotes
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, social workers Dani Gold and Anna Lucia examine the ethical consequences of how family violence is documented in healthcare records. In If you hit someone with a frying pan, it’s not cooking, they argue that softened or minimising language can obscure harm and undermine patient dignity. Drawing on their expertise in family violence and child safety, they offer practical strategies for more accurate, respectful documentation and highlight why every response to violence carries ethical significance.
2025 National Paediatric Bioethics Conference: How can we make better ethical decisions in practice?
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, Associate Professor Rosalind McDougall explores how we can make better ethical decisions in clinical practice …
Shownotes
In this episode of Essential Ethics, recorded at the 2025 National Paediatric Bioethics Conference, Associate Professor Rosalind McDougall explores how we can make better ethical decisions in clinical practice. Drawing on a real case, she examines the strengths and limitations of ethical theory in time-pressured healthcare settings and argues for the importance of practical wisdom, collaboration, and decision-making. Central to her presentation is the concept of epistemic humility—an openness to learning from others and recognising the limits of one’s own knowledge—as a key ingredient for effective clinical ethics deliberation.
2025 National Paediatric Bioethics Conference: Socrates in the clinic
In this opening keynote of the 2025 National Paediatric Bioethics Conference, Professor John McMillan from the Bioethics Centre at the University of Otago explores how clinical ethicists can be most useful in …
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In this opening keynote of the 2025 National Paediatric Bioethics Conference, Professor John McMillan from the Bioethics Centre at the University of Otago explores how clinical ethicists can be most useful in healthcare.
In Socrates in the clinic: the role of ethical analysis in healthcare, he challenges the dominance of ethical theories and principles, arguing that good ethics is not always good philosophy. Through practical examples and thought-provoking insights, McMillan offers a fresh perspective on ethical analysis and decision-making in clinical practice.
2024 National Paediatric Bioethics Conference: Disentangling perspectives
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 …
Shownotes
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.
Getting your heart dirty
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 …
Shownotes
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.
How should we conceptualise suffering in children's healthcare?
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 …
Shownotes
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
Love your patient
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 …
Shownotes
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
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 …
Shownotes
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.
2024 National Paediatric Bioethics Conference: Hope within despair
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 …
Shownotes
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.
2024 National Paediatric Bioethics Conference: When words fail
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 …
Shownotes
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:
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2024 National Paediatric Bioethics Conference: Beyond distress and dilemma
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 …
Shownotes
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.
2023 National Paediatric Bioethics Conference: High cost and novel therapies
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 …
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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.
2023 National Paediatric Bioethics Conference: Gender affirming care
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 …
Shownotes
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.
2023 National Paediatric Bioethics Conference: Hope, Humility and Innovation
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 …
Shownotes
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.
2023 National Paediatric Bioethics Conference: Rethinking innovation
The 2023 conference was unified by the theme of innovation. Between 2023 and 2030, there will be at least ten new and expensive therapies approved every year. But in Australia and many other nations, these …
Shownotes
The 2023 conference was unified by the theme of innovation. Between 2023 and 2030, there will be at least ten new and expensive therapies approved every year. But in Australia and many other nations, these won't necessarily be funded. Furthermore, there will be off-licence requests to use these innovations and other emerging therapies, along with new devices and surgical developments. How should clinicians, hospitals and health services approach this issue? How should bioethics be positioned to support these requests and the introduction of new and emerging treatments? This is a recording of the opening plenary of the 2023 conference. Speaker: Assistant Professor Bryanna Moore, Department of Bioethics and Health Humanities at the University of Texas Medical Branch and chair, American Society for Bioethics and Humanities, Paediatric Ethics Affinity Group. Host: Professor John Massie, Children's Bioethics Centre, The Royal Children's Hospital Melbourne.
Parents vs clinicians: a path to resolution
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 …
Shownotes
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.
13th National Paediatric Bioethics Conference 2022: Friends of the CBC hypothetical
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 …
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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.
13th National Paediatric Bioethics Conference 2022: Abandoned or relinquished? Challenges for hospital staff
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 …
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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.
13th National Paediatric Bioethics Conference 2022: Vaccinating young people against parental wishes
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 …
Shownotes
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.
Classic Conundrum: Children as haematopoietic stem cell donors: The role of an advocate
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 …
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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.
13th National Paediatric Bioethics Conference 2022: Addressing conflict: an introduction to empathic curiosity
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 …
Shownotes
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.
Deciding with Children S2 Ep4: Beyond Disability
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 …
Shownotes
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.
Deciding with Children S2 Ep3: Finding My Voice
Transition to adult services is an important step for patients who have been cared for in a children’s hospital or by a paediatrician. This is a process (transition) rather than an event (transfer) and takes …
Shownotes
Transition to adult services is an important step for patients who have been cared for in a children’s hospital or by a paediatrician. This is a process (transition) rather than an event (transfer) and takes both time and careful curation for the young person and their parents. The goal is to help develop the young person as an independent medical decision-maker at the same time as facilitating the parents’ role to switch from parent to patient advocate. There are many barriers to transition: willingness of the clinician to ‘let-go’; the patient's and parents' fears about a new environment and healthcare team; difficultly of the young person stepping-up into a role as independent decision-maker; difficulty of the parent ‘letting-go’ or shifting roles, and perhaps a poorly established medical service for young people with complex healthcare needs. Nevertheless, the process of transition needs to occur to promote the autonomy and best interests of the child and, in a call to justice, to make room for younger children who need paediatric services. Host: Prof John Massie. Guest: Evelyn Culnane, RCH Transition Service. Ethicist: Prof Clare Delany, Children’s Bioethics Centre, The Royal Children's Hospital, Melbourne, Australia.
Deciding with Children S2 Ep2: Is deciding with children a human right?
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 …
Shownotes
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.
Deciding with Children S2 Ep1: Determining capacity to decide and refuse
The legal system says that children generally don't have medical decision-making capacity. However, with increasing maturity comes a greater capacity to be involved. This is the basis for doctrines such as the …
Shownotes
The legal system says that children generally don't have medical decision-making capacity. However, with increasing maturity comes a greater capacity to be involved. This is the basis for doctrines such as the ‘mature-minor’ and ‘Gillick competence’. By including and promoting a child early in their medical consultations, we can contribute to their growth towards independent decision making. However, there are circumstances when a young person’s capacity to make a medical decision isn’t clear. Factors may include intellectual ability, emotional maturity or the decision's complexity. In this episode, we explore these circumstances and ask: how is decisional capacity determined, and who is best placed to make that determination? If the young person wants to make a decision that is not in their best interests, how should we respond? Guests: Clinician: RCH Psychiatrist Dr Andrew Court. Ethicist: A/Prof Rosalind McDougall.
The voices of experience: the ethics of partnering with families in paediatric research
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 …
Shownotes
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.
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