title: Ethical considerations in paediatric neurology: neuromuscular disease and epilepsy.
abstract: The pace of developing technology with respect to many diagnostic tests, as well as available treatments including artificial ventilation, may have progressed at a faster rate than our ethical, humane ability to decide on the optimal choices for our patients. In fact, who should make these choices; physicians or patients and families? Certain ethical aspects of neuromuscular disorders and epilepsy are reviewed. For neuromuscular disease, the example of Duchenne muscular dystrophy (DMD) with regards to genetic testing, relatively early wheelchair placement and individualised invasive ventilation is discussed. In epilepsy, performing neurosurgery in severely impaired children is probably appropriate in some cases if desired by the family. Financial and human costs restrict therapies and testing for epilepsy as well as other neurological and medical diseases. Whether it is ethical to consider costs in medical treatment or not, it is certainly a reality.
authors.affiliation: Division of Pediatric Neurology, Barrow Neurological Institute/St. Joseph's Children's Health Center, Phoenix, Arizona, United States.
authors.forename: John B
authors.initials: JB
authors.lastname: Bodensteiner
authors.forename: Yu-Tze
authors.initials: YT
authors.lastname: Ng
mesh_terms: D000324:Adrenocorticotropic Hormone / Q000627:therapeutic use; D000927:Anticonvulsants / Q000627:therapeutic use; D002353:Carrier State / Q000175:diagnosis; D002547:Cerebral Palsy / Q000150:complications; D002648:Child; D003657:Decision Making / Q000941:ethics*; D004827:Epilepsy / Q000188:drug therapy / Q000209:etiology / Q000601:surgery*; D005260:Female; D017048:Health Care Costs; D006801:Humans; D008607:Intellectual Disability / Q000150:complications; D008020:Life Support Care / Q000941:ethics; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000175:diagnosis / Q000628:therapy*; D009462:Neurology / Q000941:ethics; D011788:Quality of Life; D014342:Truth Disclosure / Q000941:ethics; D055536:Vagus Nerve Stimulation; D014910:Wheelchairs
chemical_list: D000927:Anticonvulsants; D000324:Adrenocorticotropic Hormone