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.
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.
Scientific advances now allow researchers to identify, isolate and engineer stem cells. reNEW aims to deliver treatment outcomes across the breadth of stem cell medicine – new drugs based on human stem cell models, new tissue therapies, and new cell and gene therapies. We look forward to presenting how stem cell medicine and reNEW are advancing treatments for delivery into the clinic across many currently untreatable diseases.
This Grand Round will feature two presentations on the ethical complexities of decision-making for children with life-limiting conditions. While shared decision-making is the accepted ethical approach, the devil is in the detail.
The Vernon Collins Oration was established in 1981, in memory of Professor Vernon Collins, the first Medical Director of The Royal Children’s Hospital, Melbourne. Vernon Collins held this position from 1949 to 1960 and then became the first Professor of Child Health in the University of Melbourne, before retiring in 1974. The 2021 Vernon Collins Oration will be delivered by Professor Lynn Gillam AM, an experienced clinical ethicist and Academic Director of the Children’s Bioethics Centre at The Royal Children’s Hospital.
This plenary session is named in honour of the recent Clinical Director of the Centre for Bioethics, A/Prof Jill Sewell. Professor Douglas Diekema will open the National Paediatric Bioethics Conference by considering the ethical underpinning of our conference theme, ‘Deciding with Children’. Deciding with Children is more than a vague abstraction or aspirational goal of children’s healthcare workers. Prof Diekema will demonstrate that Deciding with Children matters to the well-being of children and is a vital part of healthcare delivery. He will build on this foundation, using his clinical experience, to consider how best to authentically involve children in healthcare decisions.
Is long-term parenteral nutrition (LTPN) a step too far for children with severe neurological impairment (SNI)? Children with SNI are living longer and experiencing more gastrointestinal issues. However, clinicians remain hesitant to consider LTPN when enteral feeding fails in these patients.
