Medical Decision-Making on Behalf of Young Children: A Comparative Perspective

Description

In the wake of the Charlie Gard and Alfie Evans cases, there emerged a wide-ranging international conversation about the courts’ role in disputes between parents and medical professionals over the treatment of young children. Central issues in this debate include the question of the appropriate threshold for judicial intervention, the different balances that can be struck in weighing up the rights and interests of the child, the parents’ rights and responsibilities, and the relative roles of medical professionals and the courts. This collection provides a comparative perspective on these issues by bringing together analyses from a range of jurisdictions across Europe, North and South America, Africa and Asia. This is particularly important as parents are increasingly seeking treatment abroad when overseas doctors are prepared to offer the child a treatment that domestic doctors will not. By contextualising the differences and similarities, and drawing out the cultural and social values that inform the approach in different countries, this volume will be highly valuable to scholars across jurisdictions, not only to inform their own local debate on how best to navigate such cases, but also to foster interjurisdictional debate on these issues. Table of Contents List of Contributors 1. Introduction 2. Identifying Who and What, then How: Attending to the Role of the Decision-Maker in the Normative Debate about the Best Interests Standard I. Introduction II. The 'Who' Question and the 'How' Question III. Candidate Principles: Best Interests Standard and Harm Threshold IV. Clarifying the Decision at Hand: The 'What' Question V. Role-Specificity VI. Moving Beyond Best Interests Standard Versus Harm Threshold 3. Parental Rights, Best Interests and Significant Harm: Medical Decision-Making on Behalf of Children in Belgium I. Introduction II. Exercise of Minor Patients' Rights III. Parents' Right to Consent to a Medical Intervention IV. Disagreement between Parents and Medical Professionals V. Conclusion 4. 'Parental Rights', 'Best Interests' and the Withdrawal of Life-Sustaining Medical Treatment of Children in Scotland: A Lack of Authority I. The Legislative Framework II. The Procedural Framework III. The Scots Law Approach to 'Best Interests' in this Context 5. Parental Decisions on their Children's Medical Treatment in Switzerland I. Introduction II. Decision-Making Ability and Competence of the Child III. Guidelines and Limits of Parental Decision-Making Power for Incompetent Minors IV. Dissent between Parents and Doctors V. Conclusions 6. Medical Decision-Making on Behalf of Minors: The Hong Kong Context I. Introduction II. The Legal Position in Hong Kong III. Sociocultural Factors Prior to Judicial Intervention IV. Conclusion 7. Medical Decision-Making on Behalf of Children in China: A Multidimensional Analysis of Parental Authoritarianism I. Introduction II. Statutory Restrictions on Medical Decision-Making on Behalf of Children III. Parental Authoritarianism in Medical Decision-Making for Children IV. Multidimensional Analysis of Parental Authoritarianism in China V. Conclusion 8. Parental Rights in Mexican Law I. Introduction II. Indirect Habeas Corpus8 1049/20179 III. Legal Rights IV. Conclusion 9. Decision-Making on Behalf of Children in the Research and Clinical Context: A United States Perspective I. US Legal Framework II. Access to Experimental Interventions in the US System III. Parental Decisions with Respect to their Children IV. Conclusion 10. Withholding and Withdrawal of Life-Prolonging Treatment from Young Children in Israel I. Introduction II. Legislation II. Case-Law IV. Conclusion 11. Medical Decision-Making on Behalf of Children in English and Welsh Law: A Child-Centred Best Interests Approach I. Introduction II. The Current Position Confirmed: The Best Interests Approach III. Two Challenges to Orthodoxy IV. Evaluating the Challenge to Best Interests V. Conclusion 12. Parental Rights, Best Interests and Significant Harms: Singapore and Malaysia Perspectives on Medical Decision-Making on Behalf of Children I. Introduction II. Threshold for Judicial Intervention and its Normative Basis III. Values and Considerations that Inform Judicial Decisions IV. Social Forces and Public Perception V. Conclusion 13. Decisions about their Body: Children"s Rights and Parental Responsibility in Chile I. Introduction II. Patient Rights and Responsibilities in Chile III. Latin American Context IV. Spotlight on the Children 14. Who has the Final Word? On Trust and Legal Uncertainty within the Swedish Healthcare System I. Sweden and its Healthcare Regulation Generally II. The Requirements of Consensus and Consent in Swedish Healthcare III. Children's Rights and the Discretion of Guardians IV. The Municipal Social Welfare Committee's Ultimate Responsibility for Children – An Inadequate 'Solution' V. The Trust and Consensus Paradigm as an Explanation for the Regulatory Gap VI. Who should have the Final Word? 15. Medical Decision-Making on Behalf of Children in Ireland I. Introduction II. Background: Birth Rate and Decision-Making III. The Irish Constitution: The Role of Parents IV. 'Exceptional' Cases V. Application of the 'Best Interests' Assessment VI. The Influence of Professional Standards and Guidelines VII. Conclusion Medical Decision-Making on Behalf of Children in Ireland 16. Decisionally Incapable Children and Medical Treatment Choices in Canada I. Introduction II. Parental Rights to Make Treatment Decisions III. State Intervention and Constitutional Restraints IV. Legislated Child Protection Regimes V. The Best Interests of the Child: Legislation and Litigation VI. Failure to Provide Necessities of Life VII. Conclusion 17. Offering a Reasonable Future: Withdrawal of Life-Sustaining Treatment from Infants in French Law with Illustrations from a Parisian Neonatal Resuscitation Unit I. Introduction II. Parental Authority III. The role of physicians IV. Limitation or Withdrawal of Treatment on the Basis of Unreasonable Obstinacy V. Offering a Reasonable Future to the Child and the Family: An Illustration of the Practical Application of the French Regime VI. Conclusion: The Articulation of the Power of Physicians to Withdraw Life-Sustaining Treatment and Parental Authority Remains Uncertain 18. Parental Responsibility and Medical Decision-Making in Southern Africa: A Comparative Analysis of South Africa and Botswana I. Introduction II. Medical and Surgical Treatment III. Parental Consent to Children's Medical Treatment in Botswana IV. Conclusion 19. Young Children and Healthcare Decisions in Spain: Who Decides? I. Introduction II. Parental Responsibility III. Consent to and Refusal of Medical Treatment IV. Withdrawal of Life-Sustaining Treatment and Request for Experimental Treatment V. Conclusion 20. Who Decides the Best Interests of the Child in the End-of-Life Process? A Look at the Peruvian and Argentine Reality I. Introduction II. Argentina's Legal Framework III. Peruvian Legal Framework IV. Analysis of the Scenarios in Argentina and Peru V. Conclusion: Protect the Best Interests of the Child by Improving the Quality of Decisions 21. Reviewing Medical Decisions Concerning Infants within the Norwegian Healthcare System: A Public Law Approach I. Introduction – Overview of the Legislation Relating to Health II. The Competence to Decide on Behalf of the Minor Patient III. The Kristina and Ove Cases IV. Reflections 22. Children and Medical Decision-Making in Australia Post-Gard: A Possible Reformulation I. Introduction II. Marion's Case III. The Problems of the Therapeutic/Non-Therapeutic Distinction IV. The Court as an Uber-Parent – A New Development V. Disputes between Parents, Doctors and the Courts – When Should the Court Act as a De Novo Decision-Maker? VI. Post-Gard and the 'Risk of Significant Harm' Test in Australia VII. Judicial Review of Parental Decisions Regarding Therapeutic Treatments VIII. Conclusions 23. Parental Authoritarianism and Medical Decision-Making in Thailand: The Need to Limit Parental Authority I. Introduction II. Medical Treatment of Children: Autonomy versus Parental Authoritarianism III. The Role of Medical Professionals and Judicial Intervention for Preserving the Best Interests of Children IV. Conclusion 24. Medical Decision-Making on Behalf of Critically Ill Minors in Greece I. Introduction II. The Regime of Parental Responsibility in Greek Family Law III. Parental Consent to Medical Acts in Greek Law IV. End-of-Life Decisions for Terminal Illnesses V. Beginning-of-Life Decisions on Behalf of Minors VI. Conclusion 25. Making Decisions for Children in Healthcare and Medical Research: African Communal Responsibility or Individual Rights? I. Introduction II. Communal Responsibility versus Individual Rights in Children's Healthcare III. The Place and Value of Children in African Healthcare Contexts IV. Children in Healthcare and Medical Research: Some African Examples V. Decision-Making for Children in Healthcare VI. Conclusion 26. The Relevance of Cultural Competence to Resolving Disputes in Relation to Medical Decisions for Children I. Introduction II. Best Interests is Culture Bound III. Definition of Culture IV. Is there a Common Morality V. Cultural Competence VI. Thinking Fast and Slow: Cognitive and Unconscious Biases VII. Uncertainty VIII. Approaches to Dispute Resolution IX. What Role Should the Courts Play? X. Conclusion 27. Legal and Cultural Differences in Medical Decision-Making on Behalf of Very Young Children I. Lack of Case-Law II. The Limits of Parental Authority III. How Does Best Interests Operate? IV. Cultural Competence V. Conclusion Index