Synopsis
Advances in medical care and changes in societal expectations have resulted in different patterns of survival for children and adolescents with severe neurological disability. Increased longevity, new and unseen multi-morbidity, and access to an increasing array of new and often invasive interventions offers significant decision-making challenges to children, parents, and clinicians. Sometimes it is not clear if we are helping or harming.
This “new landscape” creates a clinically and ethically complex space for decision making. The outcomes have great importance for the child and their fate, the family, and for us, the clinicians. Approaching these decisions requires new thinking.
In this Grand Round we will describe a toolkit to support clinicians of all craft groups. The aim of the toolkit is to help clinicians to navigate medically complex and ethically difficult decisions. The toolkit’s purpose is to provide bedside clinicians with a set of skills to ensure that care goes well for everyone.
Speakers
Clinical Associate Professor Giuliana Antolovich is a paediatrician with over 25 years of clinical, education and research experience in the field of childhood neurodisability, focused on the care of children and adolescents who function at the severe end of the disability spectrum. A strong bioethical emphasis underpins her work, and a goal is to improve and expand disability literacy.
Dr Monica Cooper is a general paediatrician with an interest in working with children with physical disability and medical complexity. By optimising health, Monica aims to enhance quality of life to support meaningful participation and the best possible future outcomes.
Dr Zoë McCallum found her path to working with children with medical complexity and disability through general Paediatrics and Gastroenterology. Zoë’s interests include growth, nutrition, gastrointestinal function and supporting mental health in complex disability.
Ingrid Sutherland is a Clinical Nurse Consultant with the Department of Neurodevelopment and Disability and is the first nurse to be awarded the Melbourne Academic Centre for Health (MACH-Track) PhD scholarship. Ingrid’s clinical and research interests include supporting parents of children with disability and medical complexity, and she is now in the second year of her PhD investigating the Australian experience of respite and in-home support care for children with severe neurological conditions.