A tube too far? – Ethical issues in nutrition of children with severe neurological impairment


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. In this presentation, we explore possible reasons for this reluctance. Although these concerns are understandable, we suggest they need to be looked at critically through an ethical lens. We will focus in particular on the most complex ethical concerns, about the difficulty of stopping and possibility of missing the signs that end of life is near.



Dr. Zoë McCallum is a paediatrician based in both the Department of Neurodevelopment and Disability and the Department of Gastroenterology and Clinical Nutrition. She has worked at RCH for over 25 years. She is passionate about nutrition and growth and supporting children and families to live their best lives. She has just completed a 6 month sabbatical based in the Children’s Bioethics Centre where she has explored the issues of nutrition in children with severe neurological impairment.

Professor Clare Delany is a clinical ethicist at the Children’s Bioethics Centre and health professional educator in the Department of Medical Education at the University of Melbourne.

Professor Lynn Gillam is a clinical ethicist at RCH, and Academic Director of the Children’s Bioethics Centre.

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