In the last decade, we have seen genetic therapies leap from the benchtop into the neuromuscular clinic. This process is most dramatically illustrated by spinal muscular atrophy (SMA), which was until recently the most common genetic cause of death in infancy.
Shared decision-making is recognised as ethical best practice in making health care decisions for children. But translating ethical ideals into practice is never straightforward. Shared decision-making can run into practical and ethical complications.
Moral distress is a pervasive phenomenon in healthcare and contributes to healthcare worker burnout, turnover, and withdrawal from patient care. Moral distress can arise due to morally troubling everyday ethics issues or clinical cases we carry with us.
Olivia is a 14-year-old girl from rural NSW who was diagnosed with Pre B Acute Lymphoblastic Leukemia (ALL). The treatment is long and arduous, but if treated immediately has a 90 percent survival rate. Without treatment she will die within four weeks. Olivia has other conditions including epileptic encephalopathy (DEE), a severe intellectual disability, global developmental delay, communication difficulties, drug-resistant seizures and behavioural difficulties. The cancer therapy would require Olivia to have over 50 general anaesthetics as she won’t accept treatment without being restrained.
This Grand Round will provide a critical overview of what we know about holding children for clinical procedures, considering the child, parent, health professional and system factors which can influence procedural practice. Lucy will discuss an approach to challenge accepted narratives within practice and adopt a more child-centred rights-based approach to reduce harm and the use of restrictive practice during procedures.
In this year’s oration, Liana Buchanan, will draw on what she sees in her role as Principle Commissioner and share her perspectives on the progress we have made for children in this state and the work yet to be done. We like to consider ourselves a society that values and nurtures children, but how well does that self-concept translate into practice, policy and investment? How well do we fare when it comes to realising children’s rights in Victoria?
From the invention of the wheel, the telephone and the light bulb, to the first computer, innovation has been inextricably tied up with human curiosity and our tendency to think about and try new and better ways of doing things. In medicine, advances such as vaccine technology, the development of pharmaceuticals and data gathering and processing methods, to the completion of the human genome project, have impacted the health of generations, arguably for the better. Yet innovation raises important questions about who scientific “breakthroughs” serve and what values drive such “progress”. This presentation explores the relationship between bioethics and innovation. It considers the role of ethics in innovation and team science, and proposes a framework for a “bioethics of innovation” in paediatric research and practice. It concludes with a reflection on what doing “innovative bioethics” might entail.
What does disability care for children and young people look like in 2023, and what could it be like in the future? In 2023 it is more holistic, more funded, more early intervention, more complex, and more positive for children and their families.
Unconscious bias can play a role in both clinical care and patient experiences. Determining the presence and magnitude of inequity can be methodologically challenging in children’s research. This presentation will frame opportunities to investigate and address inequities through the lens of improvement science using patient safety as a model.
The opportunity to play is a fundamental interest of children and play is also recognised as a child’s right (article 31 of the Convention on Rights of the Child). Play is necessary for a child’s development, their healing and to mediate their experience of medical care and procedures.
