Ethics in Child Health, Peter Rosenbaum et al

Ethics in Child Health

Principles and Cases in Neurodisability

Product Type: Print Edition (Complete Book)

ISBN: 9781909962637

Series: Mac Keith Press

Edition: 1st

Publication date: September 2016

Page count: 384

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£39.95

You can download chapters or sections from this book

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.

Readership: clinicians and paediatricians in neurodisability, service providers in neurodisability, community-based health professionals,  and health policy makers.

Read the full book review by Al Aynsley-Green published in DMCN.

Peter L Rosenbaum (Editor)

 Peter Rosenbaum is Professor of Paediatrics at McMaster University and the CanChild Centre for Childhood Disability Research, Ontario Canada. He is a developmental paediatrician with over 40 years’ experience of clinical, health services research and educational activities in the field of childhood disability. His passion has been to move the paradigms in childhood disability beyond a preoccupation with impairments to focus on child and family development and function.

Gabriel M Ronen (Editor)

Gabriel Ronen is Professor of Paediatrics at McMaster University and McMaster University Children’s Hospital, Ontario, Canada. He is a paediatric neurologist, clinician, researcher and educator. The emphasis of his work has been on how patients’ reports of their lives can and should influence healthcare.

Eric Racine (Editor)

Eric Racine  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. His work aims to bring ethical deliberation to clinical and research practices and knowledge with the ultimate goal of improving patient care. He is known for leading several national and international task forces on a range of ethical problems as well as extensive pioneering contributions to the study of practical ethical problems in neurology and psychiatry.

Jennifer Johannesen and Bernard Dan (Editors)

Jennifer Johannesen  is an author, writer and speaker about ethics in healthcare from a patient/family perspective that includes issues of consent, autonomy and substitute decision-making. Ms Johannesen draws on her experience as the parent of a child with multiple severe disabilities (who died at the age of 12) to help educate and inform health professions about family perspectives in healthcare.

Bernard Dan is a pediatric neurologist, based in Belgium.  He is Editor in Chief of Developmental Medicine and Child Neurology.

  • Foreword
  • Introduction
  • SECTION A: SETTING THE STAGE: ATTUNING MORAL AND ETHICAL THINKING
  • Chapter 1. A Parent’s Perspective on Everyday Ethics. Jennifer Johannesen
  • Chapter 2 Present-Day Health and Neurodevelopmental Disability. Peter L Rosenbaum and Gabriel M Ronen with BJ Cunningham
  • Chapter 3 Can moral problems of everyday clinical practice ever be resolved? A proposal for integrative pragmatist approaches. Eric Racine
  • SECTION B
  • EARLY DAYS, THE START OF THE DIFFERENT DEVELOPMENTAL JOURNEY
  • Chapter 4 Prenatal Consultation: Ethical Challenges and Proposed Solutions. Jennifer Cobelli Kett, Hannah M. Tully, and Daniel A. Doherty
  • Chapter 5 Evidence-based neonatal neurology: Decision-making in conditions of medical uncertainty. Isabelle Chouinard, Eric Racine, Pia Wintermark
  • Chapter 6 “Best Interest” Decision Making: The Importance of Beliefs and Relationships in the Process. Howard Needelman and David Sweeney
  • Chapter 7 Humanism in the Practice of Neurodevelopmental Disability. Garey Noritz.
  • Chapter 8 Truth with hope: Ethical challenges in disclosing ‘bad’ diagnostic, prognostic and intervention information. Iona Novak, Marelle Thornton, Cathy Morgan, Petra Karlsson, Hayley Smithers-Sheedy, Nadia Badawi
  • SECTION C
  • ETHICAL ISSUES IN ADDRESSING FAMILIES’ PRIORITIES
  • Chapter 9 Different perspectives, different priorities: Clinician, patient and family finding a path ahead together. Dinah Susan Reddihough and Jane Tracy
  • Chapter 10. The Importance of Patients’ and Families’ Narratives: Developing a Philosophy of Care to Support Patient/Family Goals. Jean C. Kunz Stansbury and Scott Schwantes
  • Chapter 11. The ethics of patient advocacy: Bending the Rules on Behalf of Patients. Raymond Tervo and Paul J. Wojda
  • Chapter 12. Responding to requests for novel/unproven alternative and complementary treatments. Edward Albert Hurvitz and Garey Noritz
  • Chapter 13. A Miracle Cure for Neurological Impairment: Balancing Hype and Hope for Parents and Patients. Paul C. Mann, Russell P. Saneto and Sidney M. Gospe, Jr
  • SECTION D RESPECTING SOCIAL AND CULTURAL VALUES
  • Chapter 14. Terminology in neurodevelopmental disability: Is using stigmatizing language harmful? Lisa Samson-Fang
  • Chapter 15. Everyday Ethics in Rwanda: Perspectives on hope, fatigue, death and regrowth. Emily Esmaili and Christian Ntizimira
  • Chapter 16. When Expectations Diverge: Addressing our Cultural Differences Differently. Laura S. Funkhouser (with Suzanne Linett)
  • Chapter 17. Service provision for hard-to-reach families: What are our responsibilities? Michelle Phoenix
  • Chapter 18. The Obligation to Report Child Abuse/Neglect is More Complex Than It Seems. Lucyna M Lach and Rachel Birnbaum
  • Chapter 19. The Dilemmas for Siblings of Children with Disabilities: Personal Reflections on Ethical Challenges. Peter Blasco
  • Chapter 20. Paying attention to parental mental health: Is this our responsibility? Dinah Susan Reddihough and Elise Davis
  • SECTION E THERAPIES, REHABILITATION AND INTERVENTIONS
  • Chapter 21. Tensions regarding the processes associated with decision-making about intervention. Lora Woo, Eunice Shen and Elizabeth Russel
  • Chapter 22. “Can’t You Just Do Therapy?” When there is Disagreement About Discharge From Therapy. Janey McGeary Farber, and Harriet Fain-Tvedt
  • Chapter 23. Concurrent therapy treatment in pediatric rehabilitation. Marilyn Wright, Sandra Gaik and Kathleen Dekker
  • Chapter 24. Ethical Considerations regarding Surgical Treatment of Severe Scoliosis in Children with Cerebral Palsy. M. Wade Shrader
  • SECTION F ETHICAL ISSUES IN SPECIFIC CONDITIONS AND CONTEXTS
  • Chapter 25. Considering Best Interest, Quality of Life, Autonomy and Personhood in the ICU. Michael A Clarke
  • Chapter 26. How much is too much care? Interventions and life support in profoundly impaired children with life-threatening conditions. Christopher Newman and Eric B Zurbrugg
  • Chapter 27. Discussing Sudden Unexpected Death In Newly Diagnosed Epilepsy. James Reese, Jr, Philip Pearl.
  • Chapter 28. Ethical challenges of diagnosing FASD: When diagnosis is ‘socio-political’. Ilona Autti-Rämö
  • SECTION G EMERGING INDEPENDENCE AND PREPARING FOR ADULTHOOD
  • Chapter 29. Growth and pubertal manipulation in young people with neurodisabilities: What are the ethical implications? Constantine Samaan
  • Chapter 30. Ethical Challenges in providing transitional care for young people with a developmental disability Jan Willem Gorter and Barbara Gibson
  • Chapter 31 Conservatorship in Emerging Adults: Ethical and Legal Considerations. Henry G. Chambers
  • Epilogue
  • Looking Back to the Future. Bernard Dan

A free sample from the book is available here to download:

Rosenbaum Ethics Introductory Material

Click here to see two of the Editors, Peter Rosenbaum and Bernard Dan, discussing the development of the book, and what they hope to achieve with its publication.

'This book is not a philosophical discourse on the principles of biomedicine or the ethics of care, nor does it give readymade recipes or recommendations of how to solve an ethical dilemma, but it encourages the reader in 31 concise chapters of respectively six to eight pages to reflect ethically on his/her professional doing. An excellent and up-to-date bibliography follows each chapter, inviting the reader to delve deeper into the relevant ethical and nonethical literature. Although the content of the book is based on a large body of philosophical thinking, it is easy and sometimes fascinating to read. It picks you right up in your daily routine and makes you wonder how to improve. This book is recommended for therapist and doctors working in the neuropediatric field because it prompts the reader to reflect on augmenting “good clinical practice” with an ethical perspective.' Oswald Hasselmann, Neuropediatrics, December 2016

'The ethical mind is a knife always in need of its whetstone and any provider treating children with neurodisability needs an ethical mind. Perhaps, the most salient point of this text is that the principles of ethics can and should be applied to everyday clinical practice in the care of children with neurodisability. Given the vastly different levels of training that medical providers receive in ethics, this book is to be commended in its accessibility.' AACPDM Newsletter, Winter 2017

'This is an outstanding book that should be in every department of paediatrics and child health for all staff to access, not only those working in neurodisability. It is outstanding because it addresses real ‘lived experiences’ of children and families longside ‘worked examples’ of the practical challenges confronting the clinician.' Al Aynsley-Green, Developmental Medicine & Child Neurology, April 2017

'This text provides an approachable, case-based, and pragmatic introduction to bioethics as it relates specifically to children with neurodevelopmental conditions. The text introduces principles of bioethics and references different philosophical approaches, but it also provides practical approaches to the ethical concerns that arise in the care of these patients. From the perspective of a resident, this resource would be useful in multiple domains: as a primary resource as part of a neurology or developmental pediatrics ethics course, as a topical resource to be utilized in certain rotations, or in discussion sections. As our patients continue to teach and challenge us in the clinic and on the ward, this text provides useful case-based examples to guide how we care for patients. In the culture of clinical training of “see one, do one, teach one,” this text allows me to understand how others approach these difficult conversations and to integrate these experiences into my care of these children and their families. I highly recommend this text for the trainee and plan to use this resource to facilitate conversations about ethics in my clinical and academic neurology practice in the future.' Sarah L. Bauer Huang, The American Journal of Bioethics, August 2017

'I foresee that the best use of this text will be to use individual chapters as a forum for learners and teachers in a healthcare milieu to frame interdisciplinary rounds. The clinical scenarios could be presented, prompting discussion guided by focusing on the points highlighted by the accompanying authors’ text. In such a setting, participants may become aware of issues and points of view that they had not previously considered. This substantive experience would then be incorporated into their own future individualized iterative approach. In this way, this text would serve as a useful concrete prompt to informing and ameliorating ethical “best practice.” If this does occur, then this text would have achieved its goal well, and would be a welcomed addition to the literature.' Michael Shevell, Cambridge Quarterly of Healthcare Ethics, October 2017

'Overall, this book addresses important issues in childhood neurodisability and offers practical ethical considerations. However, while the editors strive to highlight the particularity inherent in each clinical encounter, the use of overarching ethical principles may silence the unique lived experiences of the patients and their families in the attempt to offer more informative and vague practice guidelines. Despite this limitation, this book can help clinicians bring ethical thinking into practice.' Anne Friedrich, BA, Saint Louis University