What should happen when doctors and parents disagree about what would be best for a child? When should courts become involved? Should life support be stopped against parents' wishes? The case of Charlie Gard, reached global attention in 2017. It led to widespread debate about the ethics of disagreements between doctors and parents, about the place of the law in such disputes, and about the variation in approach between different parts of the world. In this book, medical ethicists Dominic Wilkinson and Julian Savulescu critically examine the ethical questions at the heart of disputes about medical treatment for children. They use the Gard case as a springboard to a wider discussion about the rights of parents, the harms of treatment, and the vital issue of limited resources. They discuss other prominent UK and international cases of disagreement and conflict. From opposite sides of the debate Wilkinson and Savulescu provocatively outline the strongest arguments in favour of and against treatment. They analyse some of the distinctive and challenging features of treatment disputes in the 21st century and argue that disagreement about controversial ethical questions is both inevitable and desirable. They outline a series of lessons from the Gard case and propose a radical new “dissensus” framework for future cases of disagreement.

Contents

• Foreword 1
• Foreword 2
• Preface
• Part 1. Disagreement
  • Chapter 1. The Charlie Gard case
    • The Charlie Gard Story
    • Legal principles
    • Legal appeals
    • Harm threshold
    • Freedom to travel
• PART 2. Agreement
  • Chapter 2. Futility
    • Language
    • ‘Pointless’
    • The value of zero
    • Zero experience, zero benefit
    • Nearly zero
    • Levels of futility
    • Proving zero
    • Conclusion
  • Chapter 3. Best interests
    • Different reasons
    • Reduced quantity of life
    • Dignity in death
    • Reduced quality of life
    • Is quality of life subjective?
    • Suffering from treatment
    • Small chances
    • Hierarchy of reasons
  • Chapter 4. Resources
    • Part One
    • Part Two
  • Chapter 5. Research
    • Science and Ethics
    • The Importance of Research
    • Ethical principles in research
    • Conclusion
  • Chapter 6. Parents
    • A hypothetical adult case of desired experimental treatment
    • Parental autonomy
    • Knowledge of child
    • Effect on child
    • Uncertainty
    • Interests of parents and other family members
    • The Zone of Parental Discretion
    • The harm threshold
    • Zones of parental discretion and medical tourism
• PART 3. Agreeing to Disagree
  • Chapter 7. Dissensus and value pluralism
    • Consensus
    • Reasonable dissensus
    • Reasonableness
    • Limits to reasonable dissensus
  • Chapter 8. Embracing disagreement
    • Non-solutions and solutions
    • Avoiding disagreement?
    • Side-stepping disagreement (avoiding unnecessary agreement)
    • A bi-level process model for allocating scarce resources
    • Critical Care Triage and Treatment review panel (CTRP)
    • Private healthcare systems
    • Embracing disagreement
    • Advantages and disadvantages
    • Comparison with existing models
    • Experimental treatment
    • Conclusions
  • Chapter 9. Learning from Charlie Gard: What Should Be Done Next Time?
    • Hypothetical case of Infant ‘S’
    • Applying the model
• Acknowledgements
• Appendix 1. Wilkinson’s view
• Appendix 2. Savulescu’s view