Article Sidebar
Downloads
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
Article Details
Copyright (c) 2017 Bernard Dan
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
Authors who publish with this journal agree to the following terms:
Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access).
References
- 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
- 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
- Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th edition. Oxford University Press, Oxford, 2001
- 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.
- Ronen GM, Dan B. Ethical considerations in pediatric neurology. Handb Clin Neurol 2013; 111: 107-14.
- Rosenbaum PL, Ronen GM, Racine E, Johannesen J, Dan B (eds.). Ethics in Child Health: Principles and Cases in Neurodisability. Wiley, London, 2016.
- Frank P. The Preamble of the Constitution of the World Health Organization. Bull World Health Organ 2002; 80: 982.
- 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.
- World Health Organization. International classification of functioning, disability and health. World Health Organization, Geneva, 2001
- World Health Organization. International classification of functioning, disability and health: children & youth version. World Health Organization, Geneva, 2007
- Ronen GM, Rosenbaum PL. Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions: Concepts, Evidence and Practice. Wiley, London, 2013.
- 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.
- 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.
- Pangalila R. Quality of life in Duchenne muscular dystrophy: the disability paradox. Dev Med Child Neurol 2016; 58: 435-6.
- Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999; 48: 977-88.
- Noritz G. How can we practice ethical medicine when the evidence is always changing? J Child Neurol 2015; 30: 1549-50.
- 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.
- 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
- 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.
- 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.
- Page K. The four principles: can they be measured and do they predict ethical decision making? BMC Med Ethics 2012; 13: 10.
- 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.
- Dan B. Medical rhetoric and rhetoric medicine. Dev Med Child Neurol 2014; 56: 916.
References
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
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
Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th edition. Oxford University Press, Oxford, 2001
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.
Ronen GM, Dan B. Ethical considerations in pediatric neurology. Handb Clin Neurol 2013; 111: 107-14.
Rosenbaum PL, Ronen GM, Racine E, Johannesen J, Dan B (eds.). Ethics in Child Health: Principles and Cases in Neurodisability. Wiley, London, 2016.
Frank P. The Preamble of the Constitution of the World Health Organization. Bull World Health Organ 2002; 80: 982.
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.
World Health Organization. International classification of functioning, disability and health. World Health Organization, Geneva, 2001
World Health Organization. International classification of functioning, disability and health: children & youth version. World Health Organization, Geneva, 2007
Ronen GM, Rosenbaum PL. Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions: Concepts, Evidence and Practice. Wiley, London, 2013.
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.
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.
Pangalila R. Quality of life in Duchenne muscular dystrophy: the disability paradox. Dev Med Child Neurol 2016; 58: 435-6.
Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999; 48: 977-88.
Noritz G. How can we practice ethical medicine when the evidence is always changing? J Child Neurol 2015; 30: 1549-50.
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.
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
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.
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.
Page K. The four principles: can they be measured and do they predict ethical decision making? BMC Med Ethics 2012; 13: 10.
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.
Dan B. Medical rhetoric and rhetoric medicine. Dev Med Child Neurol 2014; 56: 916.