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.
Clinicians and paediatricians in neurodisability, service providers in neurodisability, community-based health professionals, and health policy makers.
Full Book Review
Read the full book review by Al Aynsley-Green published in Developmental Medicine and Child Neurology.
Video About the Book
Click <a style="font-family: Georgia, 'Times New Roman', 'Bitstream Charter', Times, serif;font-size: 16px;font-style: normal;font-weight: 400;letter-spacing: normal;text-align: start;text-indent: 0px;text-transform: none;background-color: #ffffff" title="here ” href=”https://www.mackeith.co.uk/wp-content/uploads/2016/10/Bernard-Dan-and-Peter-Rosenbaum-discuss-Ethics.m4v” target=”_self” rel=”noopener”>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.
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
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
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
Looking Back to the Future. Bernard Dan
'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, Saint Louis University
'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, 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, 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, 2017
'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, 2017
AACPDM Newsletter, 2017
'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, 2016