The Child As Vulnerable Patient

Protection and Empowerment

Lynn Hagger

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317038580
• Edition: 1
• Topic: Law
• Subtopic: Jurisprudence
• Index: Law

How can medical law and ethics take forward the issue of children's empowerment and protection? What are the key factors in considering the balance between protecting the welfare of the young and allowing them rights to autonomy? The Child as Vulnerable Patient investigates the role that a human rights approach can play in establishing the parameters of autonomy and discusses the opportunities presented in the Human Rights Act, the European Convention on the Rights of the Child and new policy initiatives in the NHS. A valuable addition to existing literature in this area, this volume will be of interest to lawyers, health professionals and students of medical law.

Chapter 1
The Importance of Protecting and Empowering Children

Introduction

At a time when the media is full of stories about children having too much power and that parents should exercise more control,1 it may seem counter-intuitive to propose that children should have greater recognition of their human rights in the paediatric health care setting2, as an overarching theme of this book. The reality is that even mature children have limited opportunities to exercise their rights appropriately3 and my argument is that we have become too protective of the younger age group.4 There appears to be a widespread feeling in young people that they are not respected by adults because their participatory rights are insufficiently recognized.5 To adopt the position advocated here would address some of these concerns. To listen and respond to children’s views, and encourage their involvement in decision-making, will make them feel more respected and facilitate a sense of responsibility.6 The law has a crucial role here. As James7 notes:

… law [is] the key mechanism through which social structures (including the social space of childhood) and social practices (including the day-to-day interactions between adults and children that constitute the lived experience of childhood) are linked … law not only incorporates the principles on which social structures are founded, it also provides the means through which relationships between the State and citizens are ordered and conducted’ which . . includes the issues of rights and responsibilities.8

Some may believe that raising the issue of children’s rights can lead to a sterile debate9 and that such an approach fails to protect their welfare interests adequately.10 I contend that the use of human rights language can lead to a change for the better11 and that human rights frameworks allow a full consideration of all relevant interests, including the need to protect children where appropriate. Of course, establishing where the balance should lie when taking account of a range of interests can be challenging. This book offers some suggestions as to where that might be and emphasizes the significance of the process by which decisions are reached. These propositions should interest both lawyers and health professionals.

Lawyers should note that some chapters will be more relevant to health professionals who wish to access an exposition of the law in certain key areas as it affects children in the health care setting. Indeed, the content of the chapters has been determined with the expressed wishes of paediatric health professionals in mind. Some base-line knowledge of the law and legal systems is assumed on the part of health professionals.12 All the areas addressed raise questions that are not always clearly answered by the law for reasons that will become apparent. However, there are some topics that require particular attention, and concern lawyers and health professionals alike. The house style of using non-specific pronouns should be noted.

The law plays a part in every aspect of clinical practice. Claims for medical malpractice are of great concern to all health professionals. These perhaps matter more to doctors because they usually carry ultimate responsibility for clinical decisions, hence the predominance of doctors in oft-cited cases.13 However, other ethico-legal issues are also likely to tax them throughout their careers. The rapid pace of development in medical science continues unabated and it becomes necessary to re-visit longstanding moral dilemmas of. The climate in which health professionals work is also changing. Partly encouraged by Government initiatives and partly fuelled by disillusionment with the health professions, patients have become more demanding. Health professionals often feel under siege with increasing demands from Government and patients14 at a time when they are subject to unprecedented criticism following high profile scandals.15 The prevalence of human rights discourse helps to stimulate such an environment. Patients want to be more involved in the decision-making about their care. The extent to which they can do this is, in the final analysis, determined by the parameters of the law.16 This is not as clear-cut as it sounds. The regulation of health care practice as a whole is derived from a range of domestic and European instruments. For our purposes, the complex interplay between statute, case law, professional guidance and, in some cases, European Union law and European Conventions in relation to the provision of health care to children, also needs to be noted.

Health care law rarely provides a definitive guide to good clinical practice. While some law does provide very detailed reflections,17 much is left to clinical judgment. Traditionally, politicians have been wary of association with ethically-charged legislation and have preferred to leave guidance in the hands of the judges and professional and statutory bodies, although this is less in evidence now.18 Even where there are legislative provisions, these tend to provide a framework that requires supplementary guidance in the form of codes of practice. They still require statutory interpretation where there is a lack of clarity or an omission. The law cannot anticipate every situation that might arise and health professionals are likely to have a breadth of knowledge not at the courts’ disposal. Nevertheless, health professionals need to employ rigorous reasoning when presented with an ethical dilemma that may result in a legal challenge despite their best endeavours. Any decisions will need to be justifiable before the law if they wish their decision to receive judicial support. However, would it be expected that ethical decisions have a ‘right’ answer? There are contrasting ethical views here19 but, in my opinion, courts are unlikely to castigate those responsible for decisions made in good faith: they have an understanding of the difficult environment in which health professionals work. Indeed, judges often believe ethical dilemmas are of such magnitude that they should be for Parliament to determine.20 Nevertheless, where there is any doubt as to the legality of a proposed course of action, it will be necessary, and in some cases mandatory, to seek judicial clarification.

Health professionals will easily recognize that their clinical practice raises issues of fundamental ethical importance: it deals with the nature of life from its very beginning until its end. The law and professional ethical guidance present a potentially bewildering array of sources for the health professional grappling with the ethical challenges they face in everyday practice. This can be even more the case in the paediatric setting. I hope this book will highlight some of the key concerns of health professionals who work with children and illustrate how these might be approached. As a legal academic, I am particularly interested in how medical law and ethics may be used to further the interests of children. In examining the law, it is clear its foundations are derived from deontological ethical perspectives with their focus on the rights and duties of individuals. As far as children are concerned, the focus of modern law and policy has been one of protection. This is partly as a response to historical and more current abuse21 as well as recognizing that children lack adult capacities at certain stages of their development. While entirely understandable, this has arguably been at the expense of children’s interests, especially that of having their autonomy acknowledged appropriately in light of persuasive empirical evidence suggesting that children are more capable than traditionally thought.22 The nature of these interests will be explored in the following chapter.

I am a strong advocate for the promotion of children’s autonomy and for the freedom for them to exercise this. However, I recognize that this needs to be fettered in some circumstances: some children lack the capacity for autonomy. This constraint may be needed to protect children when they lack competence. There is a need to ensure children’s welfare is promoted and maintained, hence the requirement for those caring for children, be they family members or health professionals, to act in their best interests.23 However, potential restrictions also apply to those children who do have the capacity. A protective stance gradually needs to give way by allowing children to determine what happens to them on their journey to competent adulthood. They need to acquire knowledge and experience life. This ‘empowers’ children:

The concept of empowerment simply serves to bring out the fact that many people do not have autonomy or the ability to adequately make choices and determine their own lives. People must therefore be enabled and encouraged to develop autonomy – they must in a word be ‘empowered’.24

True well-being, or a flourishing human life, will require a measure of control over one’s life and being able to develop one’s talents. This can be achieved by acquiring life skills and achieving autonomy.25 Self-determination, self-government, sense of responsibility and sense of development are overlapping aspects of autonomy. The individual cannot be seen as an abstraction from the socio-political context or from their relationships with others.26 However, autonomy is an ideal towards which we should strive for optimal functioning.27 On this basis, children must be empowered to make their own decisions, within certain parameters, and accept the consequences of those decisions. Ideal empowerment is a ‘… process of trusting, affirming and building self-esteem in children’.28 This ‘… should make them feel dignified, confident, affirmed respected and admired’.29 The rationale for this position and how it may be achieved are key themes of this book. We have some way yet to go in order to achieve this standard.30

In the paediatric setting there is an increased tendency to focus on the child as an individual with rights independent from those of their family. To what extent these rights should be acknowledged can be very problematic. Health professionals are keenly aware of the tension between the natural inclination to safeguard children’s interests so that they may enjoy the best life possible in the future and respecting a child’s autonomy which is also a relevant interest. Determining the scope of that respect is very difficult. A stark example of this can be found in the case of older children who suffer from...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Preface
• Table of Cases
• 1 The Importance of Protecting and Empowering Children
• 2 The Law and Children’s Autonomy
• 3 Parental Responsibility and Children’s Health Care Treatment
• 4 Confidentiality and Children
• 5 Genetic Testing and Counselling: The Paradigm Case for Family Medicine?
• 6 Negligence and Complaints
• 7 Children in Research
• 8 Children’s Participation and Foundation Trusts: Some New Opportunities?
• 9 Concluding Remarks
• Index