Main Article Content

Abstract

The field of paediatric neurology has evolved considerably in parallel with enhanced longevity, advances in technology and changes in cultural perception. New concepts have been promoted with respect to health, functioning, quality of life and legal rights. This has seen the development of novel approaches to the child in society, disease, disability, professional-family relationship and the role of the paediatric neurologist, associated with enhanced responsibility. This changing climate has also led to increasing recognition of ethical situations including in terms of uncertainty of diagnosis and prognosis, harmonising the goals of medical care, decision-making, evidence-informed practice, research, and developing partnerships with families and young people with neurological impairments as well as with colleagues. The principles of bioethics, namely autonomy, beneficence, non-maleficence and justice, apply with particular resonance in paediatric neurology. Together with a relational and contextual approach, they help in identifying and addressing ethical issues pertaining to daily (clinical) life and in revisiting the interface between good clinical practice and ethical practice as an empathic experience. These areas should inform further development, concepts, and content of the field.

 

An early version of this paper was presented as a keynote lecture at the 14th International Child Neurology Congress “Bridging Worlds; Child Neurology from a Global Perspective” in 2016 in Amsterdam, the Netherlands.

Keywords

bioethics paediatrics neurology disability evidence-based medicine

Article Details

How to Cite
Dan, B. (2017). Ethics in paediatric neurology. Journal of the International Child Neurology Association, 1(1). Retrieved from http://jicna.org/index.php/journal/article/view/jicna-2017-71

References

  1. Baltzly D. Stoicism. In The Stanford Encyclopedia of Philosophy. Spring 2014 edition. Edited by Zalta EN. URL = http://plato.stanford.edu/archives/spr2014/entries/stoicism/, retrieved 20 July 2016
  2. Pavur C. The Hippocratic Oath in Latin with English translation. URL = http://www.academia.edu/2638728/The_Hippocratic_Oath_in_Latin_with_English_translation, retrieved 20 July 2016
  3. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th edition. Oxford University Press, Oxford, 2001
  4. Shevell MI. A brief synopsis of the "why, what, and how" of teaching ethics to pediatric neurology trainees. Semin Pediatr Neurol 201; 18: 79-80.
  5. Ronen GM, Dan B. Ethical considerations in pediatric neurology. Handb Clin Neurol 2013; 111: 107-14.
  6. Rosenbaum PL, Ronen GM, Racine E, Johannesen J, Dan B (eds.). Ethics in Child Health: Principles and Cases in Neurodisability. Wiley, London, 2016.
  7. Frank P. The Preamble of the Constitution of the World Health Organization. Bull World Health Organ 2002; 80: 982.
  8. Huber M, van Vliet M, Giezenberg M, Winkens B, Heerkens Y, Dagnelie PC, Knottnerus JA. Towards a 'patient-centred' operationalisation of the new dynamic concept of health: a mixed methods study. BMJ Open 2016; 6: e010091.
  9. World Health Organization. International classification of functioning, disability and health. World Health Organization, Geneva, 2001
  10. World Health Organization. International classification of functioning, disability and health: children & youth version. World Health Organization, Geneva, 2007
  11. Ronen GM, Rosenbaum PL. Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions: Concepts, Evidence and Practice. Wiley, London, 2013.
  12. Colver A, Rapp M, Eisemann N, Ehlinger V, Thyen U, Dickinson HO, Parkes J, Parkinson K, Nystrand M, Fauconnier J, Marcelli M, Michelsen SI, Arnaud C. Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis. Lancet 2015; 385: 705-16.
  13. Mezgebe M, Akhtar-Danesh GG, Streiner DL, Fayed N, Rosenbaum PL, Ronen GM. Quality of life in children with epilepsy: How does it compare with the quality of life in typical children and children with cerebral palsy? Epilepsy Behav 2015; 52: 239-43.
  14. Pangalila R. Quality of life in Duchenne muscular dystrophy: the disability paradox. Dev Med Child Neurol 2016; 58: 435-6.
  15. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999; 48: 977-88.
  16. Noritz G. How can we practice ethical medicine when the evidence is always changing? J Child Neurol 2015; 30: 1549-50.
  17. Modi N, Vohra J, Preston J, Elliott C, Van't Hoff W, Coad J, Gibson F, Partridge L, Brierley J, Larcher V, Greenough A; Working Party of the Royal College of Paediatrics and Child Health. Guidance on clinical research involving infants, children and young people: an update for researchers and research ethics committees. Arch Dis Child 2014; 99: 887-91.
  18. Lepola P, Needham A, Mendum J, Sallabank P, Neubauer D, de Wildt S. Informed consent for paediatric clinical trials in Europe. Arch Dis Child, in press
  19. Kluge EH. Ethical and legal challenges for health telematics in a global world: telehealth and the technological imperative. Int J Med Inform 2011; 80: e1-5.
  20. United Nations General Assembly. Convention on the Rights of Persons with Disabilities. Resolution adopted by the General Assembly, 24 January 2007, A/RES/61/106, available at: http://www.refworld.org/docid/45f973632.html, retrieved on 20 July 2016.
  21. Page K. The four principles: can they be measured and do they predict ethical decision making? BMC Med Ethics 2012; 13: 10.
  22. Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 8th edition. McGraw-Hill Education, New York, 2015.
  23. Dan B. Medical rhetoric and rhetoric medicine. Dev Med Child Neurol 2014; 56: 916.