In paediatrics, clinicians and parents sometimes disagree about the appropriate medical treatment for a child. Parents can prefer an option that differs from the clinician’s recommendation. When should the parents’ decision about their child’s medical treatment be overridden?
This book explores ethical decision-making when clinicians and parents disagree about medical treatment for a child. It develops and explores a concept called the zone of parental discretion: an ethical tool that aims to balance children’s wellbeing and parents’ rights to make medical decisions for their children. Written by experienced clinical ethicists and paediatric clinicians, this book offers ethical analysis and practical guidance based on real-life clinical cases. It aims to assist doctors, nurses, allied health professionals and clinical ethics staff to deal with these ethically challenging situations.
The book is divided into five parts:
1. An ethical tool: the zone of parental discretion
2. Roles of doctors and parents in decision-making
3. Clinicians encountering parental refusals
4. Clinicians encountering parental requests for treatment
5. Clinicians encountering parental requests for interventions on healthy children
Table of Contents
Introduction (Rosalind McDougall, Clare Delany and Lynn Gillam)
Part I: An ethical tool: the zone of parental discretion
1. The zone of parental discretion (Rosalind McDougall, Lynn Gillam and Hugo Gold)
2. Within the ZPD: focusing on harm and children’s interests (Rosalind McDougall, Lynn Gillam, Nikki Kerruish and Jeanne Snelling)
Part II: Roles of doctors and parents in decision-making
3. So, do we really need doctors anyway? Information, expertise and the changing dynamic between doctors and families (Giuliana Antolovich)
4. Who should decide for critically ill neonates and how? The grey zone in neonatal treatment decisions (Dominic Wilkinson)
5. Parental rights: who has them and what are their limits? (Giuliana Fuscaldo)
Part III: Clinicians encountering parental refusals
6. The rehabilitation context: the ZPD and ongoing care questions (Clare Delany and Barbara E Gibson)
7. When a parental refusal of treatment is only distantly or unpredictably life-threatening to the child (Henry Kilham, David Isaacs and Ian Kerridge)
8. Parental discretion and medical tests for children (Rosalind McDougall and Hugo Gold)
Part IV: Clinicians encountering parental requests for treatment
9. Parents seeking treatment that health professionals consider burdensome (John Massie)
10. Children with profound cognitive impairment: growth attenuation and the ZPD (Nikki Kerruish and Jeanne Snelling)
Part V: Clinicians encountering parental requests for interventions on healthy children
11. The ethics of performing elective appearance-altering procedures to alleviate or prevent psychosocial harms to the child: the case of paediatric otoplasty (Lauren Notini)
12. Genetic carrier testing in children (Danya Vears)
13. Parent-led request for female genital cosmetic surgery in an adolescent (Merle Spriggs)
Conclusion: the ZPD as an ethics education tool (Clare Delany)
Rosalind McDougall is an ethicist at the Children’s Bioethics Centre, Royal Children’s Hospital Melbourne, and at the Centre for Health Equity, University of Melbourne. She studied philosophy, genetics and bioethics at the University of Melbourne and the University of Oxford, and has published widely on issues in clinical ethics and reproductive ethics. Her research focuses on paediatrics and parenthood. Rosalind has been involved in clinical ethics case consultation in Australian hospitals since 2008, and is currently a member of the Clinical Ethics Response Group at the Royal Children’s Hospital Melbourne.
Clare Delany worked for many years as a physiotherapist but now researches and practices in clinical ethics and clinical education. Clare is an Associate Professor in the Department of Medical Education, School of Medicine at the University of Melbourne and a Clinical Ethicist at the Royal Children’s Hospital Melbourne. At the University, Clare teaches in professional ethics, qualitative research and critical thinking and reasoning in health care. At the Children’s Bioethics Centre, Clare is a member of the Clinical Ethics Response Group and is involved in education, consultations and research in paediatric clinical ethics.
Lynn Gillam is an experienced ethicist, originally trained in philosophy (MA, 1988, Oxon) and bioethics (PhD, Monash, 2000). Lynn is the Academic Director of the Children’s Bioethics Centre at the Royal Children’s Hospital Melbourne. She is also Professor in Health Ethics at the University of Melbourne, in the Melbourne School of Population and Global Health. Lynn works in clinical ethics case consultation at the Royal Children’s Hospital, and has been involved in over 200 ethics consultations over the past 10 years. At the Royal Children’s Hospital, she also provides policy advice and leads research into a range of issues in paediatric clinical ethics.