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 Royal Children’s Hospital Children’s Bioethics Centre has recently appointed the first Bioethics Clinical Nurse Consultant, Dr Jenny O’Neill. In this Grand Round, we introduce Jenny, and explore the role of the nurse ethicist and the value they can bring to a healthcare service. We will highlight the unique perspective that a nursing background brings to ethical deliberation and clinical ethics consultation.
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.
Hand transplantation is a technique to reconstruct absent and functionless upper limbs using cadaveric donor limbs.
In the 20 years since the world’s first hand transplant, the technique has developed into a reliable and valuable option for carefully selected adult amputees. The downside is the need for immunosuppression with its inherent risks (metabolic, infective, neoplastic, and renal impairment) for the duration of the transplant.
In this interactive and case-based session, the Children’s Bioethics Centre team will introduce the ethical idea of deciding with children, rather than ‘for’ them. We will briefly describe the ethical foundations of this idea, discuss what it means in practice, and why it matters.
The Complex Movement Disorders program at the Royal Children’s Hospital commenced in 1997 and has evolved since then. It is currently funded by RCH Foundation and the fundraising efforts of A/Prof Andrew Kornberg’s Fly for the Kids event in 2017. The program allows coordinated multidisciplinary assessment and management of children with movement disorders and associated neurodevelopmental comorbidities.
The COVID-19 pandemic is forcing us to re-organize and re-conceptualize many aspects of our lives. In this Grand Round, I will start with some general thoughts about these changes. Then, I will focus specifically on the challenges that the pandemic creates for the way that we oversee and regulate clinical research. I will speculate about whether some of these changes represent a better way of doing things and thus ought to change the way we practice after the pandemic.
COVID-19 has resulted in a flurry of high-stakes decision-making, at a public health level and an individual patient level, with significant impacts on how children are cared for, and how staff work. Many of these decisions have ethical dimensions.
