Ethics in Child Health

Professor Peter Rosenbaum MD FRCP(C) is Professor of Paediatrics at McMaster University and the CanChild Centre for Childhood Disability Research, Ontario Canada.Professor Gabriel Ronen MD MSc FRCP(C) is Professor of Paediatrics at McMaster University and McMaster University Children's Hospital, Ontario, Canada.Eric Racine PhD is Director of the Neuroethics Research Unit, Associate Research Professor and Associate Director, Academic Affairs of the Institut de recherches cliniques de Montréal, Quebec, Canada.Professor Bernard Dan MD PhD is Professor of Neurophysiology and Developmental Neurology at the Université libre de Bruxelles (ULB), and Director of Rehabilitation at Inkendaal Rehabilitation Hospital, Belgium.Jennifer Johannesen MsC is an author, writer, speaker, and parent.

• Introduction 1SECTION A: SETTING THE STAGE: ATTUNING MORAL AND ETHICAL THINKING1 A parent’s perspective on everyday ethics 7 Jennifer Johannesen2 Present-day health and neurodevelopmental disability 17Peter L. Rosenbaum and Gabriel M. Ronen with contributions by Barbara J. Cunningham6 The importance of beliefs and relationships in the decision-making process 75 Howard Needelman and David Sweeney7 Humanism in the practice of neurodevelopmental disability: examples of challenges and opportunities 85Garey Noritz8 Truth with hope: ethical challenges in disclosing ‘bad’ diagnostic, prognostic and intervention information 97Iona Novak, Marelle Thornton, Cathy Morgan, Petra Karlsson, Hayley Smithers-Sheedy and Nadia BadawiSECTION C: ETHICAL ISSUES IN ADDRESSING FAMILIES’ PRIORITIES9 Different perspectives, different priorities: using a strengths-based approach to gain trust and find common ground 111Dinah S. Reddihough and Jane Tracy3 Can moral problems of everyday clinical practice ever be resolved? A proposal for integrative pragmatist approaches 33Eric RacineSECTION B: EARLY DAYS, THE START OF THE DIFFERENT DEVELOPMENTAL JOURNEY4 Prenatal consultation: ethical challenges and proposed solutions 49Jennifer Cobelli Kett, Hannah M. Tully and Dan Doherty5 Evidence-based neonatal neurology: decision-making in conditions of medical uncertainty 61Isabelle Chouinard, Eric Racine and Pia Wintermark10 The importance of patients’ and families’ narratives: developing a philosophy of care to support patient/family goals 123Jean C. Kunz Stansbury and Scott SchwantesSECTION D: RESPECTING SOCIAL AND CULTURAL VALUES14 Terminology in neurodevelopmental disability: is using stigmatizing language harmful? 161Lisa Samson-Fang15 Everyday ethics in Rwanda: perspectives on hope, fatigue, death and regrowth 169Emily Esmaili and Christian Ntizimira16 When expectations diverge: addressing our cultural differences differently 177Laura S. Funkhouser with contributions by Suzanne Linett17 Service provision for hard-to-reach families: what are our responsibilities? 193Michelle Phoenix18 The obligation to report child abuse/neglect is more complex than it seems 203Lucyna M. Lach and Rachel Birnbaum11 The ethics of patient advocacy: bending the rules on behalf of patients 133Raymond Tervo and Paul J. Wojda12 Responding to requests for novel/unproven alternative and complementary treatments 143Edward A. Hurvitz and Garey Noritz13 A miracle cure for neurological disability: balancing hype and hope for parents and patients in the absence of evidence-based recommendations 153Paul C. Mann, Russell P. Saneto and Sidney M. Gospe Jr.19 The dilemmas for siblings of children with disabilities: personal reflections on ethical challenges 215Peter Blasco20 Paying attention to parental mental health: is this our responsibility? 223Dinah S. Reddihough and Elise DavisSECTION E: THERAPIES, REHABILITATION AND INTERVENTIONS21 Tensions regarding the processes associated with decision-making about intervention 233Lora Woo, Eunice Shen and Elizabeth Russel22 Can’t you just do therapy? When there is disagreement about discharge from therapy 249Janey McGeary Farber and Harriet Fain-Tvedt23 Concurrent therapy in pediatric neurorehabilitation 259Marilyn Wright, Sandra Gaik and Kathleen Dekker24 Ethical considerations regarding surgical treatment of severe scoliosis in children with cerebral palsy 271M. Wade ShraderSECTION F: ETHICAL ISSUES IN SPECIFIC CONDITIONS AND CONTEXTS25 Considering best interest, quality of life, autonomy and personhood in the intensive care unit 279Michael A. Clarke26 How much is too much care? Interventions and life support in children with profound impairments and life-threatening conditions 291Christopher J. Newman and Eric B. Zurbrugg27 Discussing sudden unexpected death in newly diagnosed epilepsy 303James J. Reese Jr. and Phillip L. Pearl28 Ethical challenges of diagnosing fetal alcohol spectrum disorder: when diagnosis has sociopolitical consequences 311Ilona Autti-RämöSECTION G: EMERGING INDEPENDENCE AND PREPARING FOR ADULTHOOD29 Growth and pubertal manipulation in children with neurodisabilities: what are the ethical implications? 323M. Constantine Samaan30 Independence in adulthood: ethical challenges in providing transitional care for young people with neurodevelopmental impairments 335Jan Willem Gorter and Barbara E. Gibson31 Conservatorship in emerging adults: ethical and legal considerations 349Henry G. ChambersEpilogue: Looking back to the future 353Bernard Dan