Ethics in Child Health – Chapter 26: How much is too much care? (ebook)
This chapter is part of Ethics in Child Health
Principles and Cases in Neurodisability
Product Type: PDF (Sub-Section of Book)
Series: Mac Keith Press
Edition: 1st
Publication date: September 2016
Page count: 12
Buy now from Mac Keith Press
£1.50 (inc 20% VAT)
Chapter 26 of the book – How much is too much care? Interventions and life support in children with profound impairments and life-threatening conditions
The fact that we often have the technological capacity to extend life can easily create considerable discomfort for practitioners as well as families, and can be the focal point for conflicts both between families and service providers, and more broadly within the health and social care teams. In their analysis of two cases, Newman and Zurbrugg discuss the impact of these challenges as they might concern the child, the family, the service providers and their teams, and the broader society in which these dramas play out. These dilemmas expose people’s personal values, and bring into focus universal values such as those enshrined in United Nations’ conventions on the rights of children and of disabled persons. (These issues are also addressed in Chapter 5.)
About the complete 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.
- From the complete book:
- 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:
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.
- Ethics in Child Health - Chapter 3: Can moral problems of everyday clinical practice ever be resolved? (ebook)
- Ethics in Child Health - Chapter 2: Present-day health and neurodevelopmental disability (ebook)
- Ethics in Child Health - Chapter 31: Conservatorship in emerging adults (ebook)
- Ethics in Child Health - Chapter 30: Independence in adulthood (ebook)
- Ethics in Child Health - Chapter 29: Growth and pubertal manipulation in children with neurodisabilities (ebook)
- Ethics in Child Health - Chapter 28: Ethical challenges of diagnosing fetal alcohol spectrum disorder (ebook)
- Ethics in Child Health - Chapter 27: Discussing sudden unexpected death in newly diagnosed epilepsy (ebook)
- Ethics in Child Health - Chapter 26: How much is too much care? (ebook)
- Ethics in Child Health - Chapter 25: Considering best interest, quality of life, autonomy and personhood in the intensive care unit (ebook)
- Ethics in Child Health - Chapter 24: Ethical considerations regarding surgical treatment of severe scoliosis in children with cerebral palsy (ebook)
- Ethics in Child Health - Chapter 23: Concurrent therapy in pediatric neurorehabilitation (ebook)
- Ethics in Child Health - Chapter 22: Can’t you just do therapy? (ebook)
- Ethics in Child Health - Chapter 21: Tensions regarding the processes associated with decision-making (ebook)
- Ethics in Child Health - Chapter 20: Paying attention to parental mental health (ebook)
- Ethics in Child Health - Chapter 19: The dilemmas for siblings of children with disabilities (ebook)
- Ethics in Child Health - Chapter 18: The obligation to report child abuse/neglect is more complex than it seems (ebook)
- Ethics in Child Health - Chapter 17: Service provision for hard-to-reach families (ebook)
- Ethics in Child Health - Chapter 15: Everyday ethics in Rwanda (ebook)
- Ethics in Child Health - Chapter 14: Terminology in neurodevelopmental disability (ebook)
- Ethics in Child Health - Chapter 13: A miracle cure for neurological disability (ebook)
- Ethics in Child Health - Chapter 12: Responding to requests for novel/unproven alternative and complementary treatments (ebook)
- Ethics in Child Health - Chapter 11: The ethics of patient advocacy (ebook)
- Ethics in Child Health - Chapter 10: The importance of patients’ and families’ narratives (ebook)
- Ethics in Child Health - Chapter 9: Different perspectives, different priorities (ebook)
- Ethics in Child Health - Chapter 8: Truth with hope (ebook)
- Ethics in Child Health - Chapter 7: Humanism in the practice of neurodevelopmental disability (ebook)
- Ethics in Child Health - Chapter 6: The importance of beliefs and relationships in the decision-making (ebook)
- Ethics in Child Health - (Chapter 5) - Evidence-based neonatal neurology (ebook)
- Ethics in Child Health - Chapter 4: Prenatal consultation (ebook)
- Ethics in Child Health - Chapter 1: A parent’s perspective on everyday ethics (free ebook)
- Ethics in Child Health - Chapter 16: When expectations diverge (ebook)