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When Doctors and Parents Disagree

When Doctors and Parents Disagree

Ethics, Paediatrics and the Zone of Parental Discretion

Edited by Rosalind McDougall, Clare Delany and Lynn Gillam

CONTENTSREVIEWS

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

For more information visit: 
www.whendoctorsandparentsdisagree.com

In the media…

  • Dr Ros McDougall on ABC Radio National, Life Matters with Cassie McCullaghon_9 September 2016 Listen to interview...
  • When doctors and parents disagree: clinical ‘best’ not always best for family, The Melbourne Newsroom, 9 September 2016 Read article...
  • When parents disagree with doctors on a child’s treatment, who should have the final say?, The Conversation, 7 September 2016 Read article...

CONTENTS

Acknowledgments
Notes on Contributors

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

Index


REVIEWS

This book outlines an ethical conceptual tool – the zone of parental discretion (ZPD) that was developed through clinical ethics consultations. It is a framework to assist clinicians to assess parental decisions when parents and medical practitioners disagree on the proposed treatment plan. … For lawyers in medical law and child protection the book provides valuable insight into the issues and the decision-making frameworks used by clinicians and ethicists and why resort to the law is relatively rare in this context. Read full review...

Elizabeth Brophy, In_Print, Law Institute Journal Victoria, April 2017

[The] concept of the zone of parental discretion (ZPD) has compassionate aims: to offer a clearer way to avoid or resolve prolonged disputes between doctors and parents; to allow more scope for parents’ discretion; and to respect their moral weight and family harmony. Described as ‘an ethical tool that aims to balance children’s wellbeing and parents’ rights to make medical decisions for their children’, ZPD proposes that ‘parents are not ethically required to choose [in] the child’s best interests’. They may make ‘suboptimal’ choices that could favour the parents’ personal values or the interests of the whole family, as long as these do not harm the child. If decisions might be harmful, then ZPD ends and clinicians may intervene by refusing to provide requested treatment they see as unnecessary, or by trying to enforce treatment they deem clinically necessary, when they may refer families to the child protection services or the law courts. Read full review...

P Alderson, Clinical Ethics, March 2017

Twelve individuals have contributed to this text; all with appropriate qualifications and distinguished in their field. The book focusses on this question: When should a parent’s decision about their child’s medical treatment be overridden? In extreme cases, the answer is clear. The editors explore a concept called “the zone of parental discretion”. It is described as an ethical tool that aims to balance the children’s wellbeing and the parent’s rights to make medical decisions for their children.
         Interestingly, the idea arose directly out of the editors’ experience of providing clinical ethics case consultation and support for clinical staff at the Royal Children’s Hospital in Melbourne. They note that since 2005, they have done in excess of 180 consultations, and approximately 22 per cent of these have involved situations where parents disagreed with the treating team’s recommendations.
         One of the broad functions of this book is to present examples of parent/clinician disagreement organised into the following meaningful categories: An ethical tool: the zone of parental discretion; Roles of doctors and parents in decision-making; Clinicians encountering parental refusals; Clinicians encountering parental requests for treatment; and Clinicians encountering parental requests for interventions on healthy children.
         One amusing yet fascinating case study examined in the book involved a two-year old boy with prominent ears. The parents were requesting an Otoplasty (an ear-pinning surgery) to avoid (potential) future teasing.
         This is a thought-provoking book which presents a practical framework for processing and dealing with the ethics involved in the field of paediatrics.

Rahul Bedi, Ethos, ACT Law Society, March 2017

Ethical issues in health are common and paediatric health can be particularly complicated and challenging. Parents' rights to make medical decisions for their children are widely acknowledged. But is this always the best for the child? How do we determine the appropriateness of this widely held belief? What do we do when there is a disagreement between the treating team and parents?
         "Doctors and Parents Disagree: Ethics, Paediatrics and the Zone of Parental Discretion" provides an interesting and informative look at the variety of ethical decisions facing health care professionals working in these areas. …
         The book aims to "assist doctors, nurses, allied health professionals and clinical ethics staff to deal with these ethically challenging situations", which is exactly what it does. As a social worker within this area, I found the case scenarios allow for important ethical discussion and reflection, but perhaps of greatest benefit in the book is the very real and practical support the ZPD framework provides for clinicians working through these challenging scenarios. Read full review...

Katherine Dowson, Social Work Connect, November 2016

The past 60 years has seen enormous changes in the way in which decisions regarding the medical care of children are approached. From an era of medical paternalism where “doctor knew best”, decision making has emerged into an era where parent and care givers have become an integral part of the decision-making process and the internet has seriously eroded the doctor’s monopoly on information relevant to decisions whether or not to treat, or between various treatment options. …
         The way in which doctors are equipped to deal with these type of dilemmas traditionally involved resort to deceptively simplistic admonitions to “do no harm” or to do “what is best” for the child. However, in clinical practice, such phrases are apt to beg more questions than they answer. How does one determine what is “best” for the child? How should the harm which might result from the parents’ refusal to agree to treatment to be weighed against the harm which might result from the treatment if it were to proceed? Without a framework, questions of this type are apt to multiply and lead to inconsistent results even among similar clinical situations.
         This is the area in which the authors of When Doctors and Parents Disagree suggest a framework to enable clinicians to address treatment decision in an orderly way. For legal practitioners the approach is familiar: in determining whether to grant an interlocutory injunction, the court does not proceed by asking what is the “best” outcome but by asking a structured series of questions reaching an outcome that is one of many which are “good enough” rather than “best”. …
         The book is a useful resource in a difficult area of practice in both the medical and legal professions. It will also be of assistance to courts exercising statutory or parens patriae jurisdiction in disputes between parents and doctors over the treatment of children or even adults under an incapacity. Read full review...

Scott Aspinall, Australian Law Journal, 2016, 90

This small volume contains thirteen articles by medical professionals practising in various paediatric specialties. Its intended audience is the community of medical practitioners generally, and its stated aim is to raise an important ethical issue – in what instances should a medical practitioner override a parent’s decision about their child’s medical care – and to provide an ethical tool to doctors faced with such situations. Read full review...

Richard Weinstein, Bar News, NSW Bar Association, Summer 2016

Last week this publication reviewed the work of John Seymour, Children, Parents and the Courts; Legal Intervention in Family Life which concerned the intervention by the Courts in parenting. This week’s review considers a work on a closely related topic being the conflict which arises when parents and doctors disagree as to the appropriate medical treatment to provide to children. In particular, the work considers those occasions where medical treatment can be withdrawn from children.
         This work concentrates on the ethical rather than legal issues which arise when parents and medical practitioners disagree as to the medical treatment which is appropriate for a child. It seeks to develop an ethical tool which can be used to solve such issues when they arise; it is called the Zone of Parental Discretion. The tool seeks to balance the wellbeing of the child with the rights of parents to make medical decisions for their child. It is a collation of essays which are well ordered and interrelated and which are written by leading experienced clinical ethicists and paediatric clinicians. Its focus is on the resolution of ethical conflicts which arise when clinicians are faced with parents who require treatment for children which is not recommended by medical practitioners.
         It is a relatively short work which is easy to read and a useful reference for those engaged in the resolution of medical / legal issues.

Queensland Law Reporter 2 September 2016 [2016] 34 QLR

   

Published 20 June 2016
Publisher The Federation Press
Paperback/272pp
ISBN 9781760020590
Australian RRP $79.95
International Price $75.00
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