Ethics in Child Health Principles and Cases in Neurodisability

Have you ever

• Wondered how to deal with a family that repeatedly fails to keep clinic appointments?
• Disagreed with colleagues over a proposed course of treatment for a child?
• Considered ways to 'bump' a child on a waiting to speed up their assessment?

These are a few of the scenarios faced by clinicians in neurodisability on a daily basis. Ethics in Child Health explores the ethical dimensions of these issues that have either been ignored or not recognised. Each chapter is built around a scenario familiar to clinicians and is discussed with respect to how ethical principles can be utilised to inform decision-making. Useful "Themes for Discussion" are provided at the end of each chapter to help professionals and students develop practical ethical thinking. Ethics in Child Health offers a set of principles that clinicians, social workers and policy-makers can utilise in their respective spheres of influence.

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 1

SECTION A: SETTING THE STAGE: ATTUNING MORAL AND ETHICAL THINKING

1 A parent’s perspective on everyday ethics 7
Jennifer Johannesen

2 Present-day health and neurodevelopmental disability 17
Peter L. Rosenbaum and Gabriel M. Ronen with contributions by Barbara J. Cunningham

6 The importance of beliefs and relationships in the decision-making process 75
Howard Needelman and David Sweeney

7 Humanism in the practice of neurodevelopmental disability: examples of challenges and opportunities 85
Garey Noritz

8 Truth with hope: ethical challenges in disclosing ‘bad’ diagnostic, prognostic and intervention information 97
Iona Novak, Marelle Thornton, Cathy Morgan, Petra Karlsson, Hayley Smithers-Sheedy and Nadia Badawi

SECTION C: ETHICAL ISSUES IN ADDRESSING FAMILIES’ PRIORITIES

9 Different perspectives, different priorities: using a strengths-based approach to gain trust and find common ground 111
Dinah S. Reddihough and Jane Tracy

3 Can moral problems of everyday clinical practice ever be resolved? A proposal for integrative pragmatist approaches 33
Eric Racine

SECTION B: EARLY DAYS, THE START OF THE DIFFERENT DEVELOPMENTAL JOURNEY

4 Prenatal consultation: ethical challenges and proposed solutions 49
Jennifer Cobelli Kett, Hannah M. Tully and Dan Doherty

5 Evidence-based neonatal neurology: decision-making in conditions of medical uncertainty 61
Isabelle Chouinard, Eric Racine and Pia Wintermark

10 The importance of patients’ and families’ narratives: developing a philosophy of care to support patient/family goals 123
Jean C. Kunz Stansbury and Scott Schwantes

SECTION D: RESPECTING SOCIAL AND CULTURAL VALUES

14 Terminology in neurodevelopmental disability: is using stigmatizing language harmful? 161
Lisa Samson-Fang

15 Everyday ethics in Rwanda: perspectives on hope, fatigue, death and regrowth 169
Emily Esmaili and Christian Ntizimira

16 When expectations diverge: addressing our cultural differences differently 177
Laura S. Funkhouser with contributions by Suzanne Linett

17 Service provision for hard-to-reach families: what are our responsibilities? 193
Michelle Phoenix

18 The obligation to report child abuse/neglect is more complex than it seems 203
Lucyna M. Lach and Rachel Birnbaum

11 The ethics of patient advocacy: bending the rules on behalf of patients 133
Raymond Tervo and Paul J. Wojda

12 Responding to requests for novel/unproven alternative and complementary treatments 143
Edward A. Hurvitz and Garey Noritz

13 A miracle cure for neurological disability: balancing hype and hope for parents and patients in the absence of evidence-based recommendations 153
Paul 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 Blasco

20 Paying attention to parental mental health: is this our responsibility? 223
Dinah S. Reddihough and Elise Davis

SECTION E: THERAPIES, REHABILITATION AND INTERVENTIONS

21 Tensions regarding the processes associated with decision-making about intervention 233
Lora Woo, Eunice Shen and Elizabeth Russel

22 Can’t you just do therapy? When there is disagreement about discharge from therapy 249
Janey McGeary Farber and Harriet Fain-Tvedt

23 Concurrent therapy in pediatric neurorehabilitation 259
Marilyn Wright, Sandra Gaik and Kathleen Dekker

24 Ethical considerations regarding surgical treatment of severe scoliosis in children with cerebral palsy 271
M. Wade Shrader

SECTION F: ETHICAL ISSUES IN SPECIFIC CONDITIONS AND CONTEXTS

25 Considering best interest, quality of life, autonomy and personhood in the intensive care unit 279
Michael A. Clarke

26 How much is too much care? Interventions and life support in children with profound impairments and life-threatening conditions 291
Christopher J. Newman and Eric B. Zurbrugg

27 Discussing sudden unexpected death in newly diagnosed epilepsy 303
James J. Reese Jr. and Phillip L. Pearl

28 Ethical challenges of diagnosing fetal alcohol spectrum disorder: when diagnosis has sociopolitical consequences 311
Ilona Autti-Rämö

SECTION G: EMERGING INDEPENDENCE AND PREPARING FOR ADULTHOOD

29 Growth and pubertal manipulation in children with neurodisabilities: what are the ethical implications? 323
M. Constantine Samaan

30 Independence in adulthood: ethical challenges in providing transitional care for young people with neurodevelopmental impairments 335
Jan Willem Gorter and Barbara E. Gibson

31 Conservatorship in emerging adults: ethical and legal considerations 349
Henry G. Chambers

Epilogue: Looking back to the future 353
Bernard Dan

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