The field of paediatric neurology has evolved considerably in parallel with the enhanced longevity of children with neurodevelopmental conditions, advances in technology, and cultural changes, notably about the meaning of living with a disability. New concepts have been promoted on health and quality of life as well as beyond the context of healthcare in the legal realm leading to novel approaches to the child in society, to disease and disability, professional-family relationship, and the role of the paediatric neurologist. This has brought into focus several issues including dealing with uncertainty of diagnosis and prognosis, harmonising the goals of clinical care between different professions and stakeholders, implementing shared decision-making, supporting evidence-informed practice, research, and partnerships with families and young people with neurological impairments. The principles of bioethics, namely autonomy, beneficence, non maleficence and justice, resonate well with paediatric neurology. Together with a relational and contextual approach to clinical and ethical practice, they help in identifying and addressing ethical issues on daily (clinical) life. They are also pillars for revisiting the interface between good clinical practice and empathic ethical practice.
Dan B, Rosenbaum PL, Ronen GM, Johannesen J, Racine E. (2017) Ethics in paediatric neurology. JICNA. Retrieved from https://jicna.org/index.php/journal/article/view/71