The Best Interests of the Child in Healthcare

Sarah Elliston

• Publisher: Routledge-Cavendish
• Year: 2007
• ISBN:
  9781135427993
• Edition: 1
• Topic: Law
• Subtopic: Law Theory & Practice
• Index: Law

Topical and compelling, this volume provides an excellent re-evaluation of the 'best interests' test in the healthcare arena; the ways in which it has developed, the inherent difficulties in its use and its interpretation in legal cases concerning the medical care of children.

Comprehensively covering both the English and Scottish position within the context of the European Convention of human Rights and the UN Convention on the Rights of the Child, the author examines a wide range of healthcare situations, from the commonly occurring to the unusual, offering a detailed analysis of legislation, case law, cases and their implications.

It includes discussions on:

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• the extent to which a child's body can be examined, operated on and affected by medicines, devices or procedures intended to bring about medical change
• the appropriate scope of parental choice and authority and at what stage of their development children should be allowed to make their own decisions
• the response to situations where the interests of children may be in conflict – the cases of conjoined twins or the donation of organs to siblings.

This work is a key resource for postgraduates and researchers working and studying in the fields of law, healthcare and medicine.

Chapter 1

Setting the scene

Introduction

Where decisions concerning children are made, the mantra of the decision needing to be made in the child’s best interest is familiar and seems unobjectionable. After all, children as potentially vulnerable members of our society surely deserve the highest levels of protection such a standard suggests? Closer inspection, however, reveals significant problems with the definition and application of such a term in practice. While these are common to all areas of decision-making concerning children, this book is focused upon the healthcare context. Here some of the most difficult and sensitive problems arise, concerning as they do the extent to which a child’s body can be examined and operated upon or affected by medicines, devices and procedures that are intended to bring about physiological or psychological change. Healthcare decisions made in childhood may have a significant impact upon the experiences and opportunities children will have both now and in the future and, in some cases, it is not only their physical and mental health but also their lives that are at stake.

How decisions should be made where medical interventions on children are involved has become an important area of concern in United Kingdom (UK) law and the number of cases dealing with this issue has grown considerably over the last 30 years or so. In part, this reflects a general trend in healthcare litigation. Here, though, additional reasons, centring on changing attitudes towards children, also play a part. Increased concentration on the need of children to be protected during their immaturity has been reflected in the development of both domestic and international law dealing with this issue.¹ At the same time, the rights of parents to determine their children’s upbringing and of children to make their own decisions have also been asserted.² Taken together, this has the obvious potential for conflict between concepts of children’s welfare, respect for parental authority and for children’s autonomy, which may need to be resolved by the law.

One difficulty that arises in this area is the power of assumptions about children and their welfare discussed by Piper (Piper, 2000). While concentrating on other parts of child law, some of her observations are equally relevant to healthcare decisions. She notes that:

Assumptions are those ideas, events and principles which are taken for granted as being true. They are no longer – or may never have been – subject to critical scrutiny, either because they appear self-evident or because it is assumed they have been proved to be ‘true’. Spelling them out, thinking about their provenance and querying their validity is therefore not necessary.

. . . we may have reached that stage in the family justice system in recent years. In relation to establishing the best interests of children, there have emerged strong general presumptions which constrain the process of working out what is best for individual children in the situation in which they find themselves.

(Piper, 2000, pp 261–2)

One major assumption that I wish to challenge here is in fact even more fundamental and that is that the best interests test does and should form the basis for making decisions about children’s healthcare. While doing so may seem heretical, there have increasingly been doubts raised about the dominance of this test and its application in a variety of contexts (Mnookin and Szwed, 1983; Reece, 1996; Eekelaar, 2002). My contention is that similar concerns may arise in healthcare.

In brief, my argument contains two main strands. The first concerns the position of children who are unable to meet standards for making decisions for themselves. Here, the vast majority of healthcare interventions are decided by parents in conjunction with medical practitioners. Where people are making decisions on behalf of others, this power cannot be unlimited and there may be a need for independent oversight. The courts, using the principle of the welfare or best interests of the child being of paramount importance, provide this. However, the courts will only normally become involved if there is a dispute between parents or where it is judged that significant interests of the child are thought likely to be compromised. Subject to this, parents have a wide discretion to make such decisions and they are not usually bound to meet the best interests test as the courts have interpreted it. My position is that in overriding parental decisions courts should also be concerned only with ensuring that significant interests of the child are not put at risk and that the decisions made by parents meet a reasonableness standard. To go further usurps the legitimate authority and function of parents and creates inconsistency in the expectation of what is within the scope of parental decision-making.

The traditional approach to the best interests test, while having problems in itself, is particularly hard to apply in some healthcare situations and requires some stretching to be made to fit. The most obvious examples are medical procedures that are of no therapeutic benefit to the child. Some of these may include an additional problem: where the interests of more than one child are concerned, such as live organ or tissue donation. A simpler and more coherent approach, and one that is already prevalent in healthcare practice, would be to require significant risk of serious harm as the threshold for judicial intervention and that, subject to this, parents should be free to decide what interests of the child should be promoted. A departure from the best interests principle already has some support, at least in relation to certain types of court intervention (Ross, 1998; Diekema, 2004). I must make it clear from the outset that I am not suggesting that parents should not be expected to promote and safeguard the welfare of their children. Clearly they should. What I am disputing is the substitution of parental decisions on what this requires by a court, simply because it disagrees with what they think best. Public policy allows parents to have the responsibility to determine what they believe is appropriate, subject to the harm limitation, and what I will argue is that courts should be bound by the same criteria. In fact courts already do perform a balancing test of harms and benefits to children when hearing cases concerning them, so to this extent a change in approach may not seem so radical. My contention goes further than this, however, and is that they should not be asked to declare that there is a single answer to what is best for the child where there are a range of reasonable responses that could be made by parents.

The second strand concerns children who are able to meet the required standard for decision-making. If it is accepted, as it generally is, that the purpose of allowing people to make decisions for others is because they are incapable of doing so, then if they have that capacity, the need for proxy decision-makers disappears. This is not the approach that has been taken by the courts, at least in England and Wales, where both parents and courts are apparently permitted to use the best interests principle to defeat even a competent child’s refusal of treatment. Courts may do so in the case of a competent child’s consent as well. There are some signs that, despite calls for greater attention to be paid to the views of children in recent times, their rights to self-determination are in fact under increasing threat. Rather than undermining the development and exercise of autonomy, I will contend that children should be supported to make decisions to the extent that they have the willingness and capacity to do so. Although there may undoubtedly be difficulty in determining when a child gains sufficient decision-making abilities to make legally binding choices and when the court should be asked to make a ruling on this, nevertheless the protective function that is claimed by the best interests test is not warranted over reasonable parents nor capable children.

One of the other common assumptions in this area is that it is usually beneficial to children to receive medically recommended treatment. The importance of maintaining health to people’s welfare is generally uncontested and unsurprisingly it has proved to be a major concern in international and national law, guidance and policy. For example, Article 6 of the UN Convention on the Rights of the Child (the UN Convention) requires that States ‘recognize that every child has the inherent right to life’ and ‘shall ensure to the maximum extent possible the survival and development of the child.’³ Similarly, Article 24 provides that they must ‘recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such healthcare services.’ This Article goes on to set out specific issues States could take steps to address to meet this requirement, such as ensuring ‘the provision of necessary medical assistance and healthcare to all children with emphasis on the development of primary healthcare.’ More recently, the World Medical Association has also issued a Declaration on the Rights of the Child to Health Care.⁴

The provision of healthcare to children in the UK is primarily through the National Health Service (NHS) and there is a requirement on the Secretaries of State to ensure the provision of medical services to meet the reasonable needs of the population, again recognising the fundamental importance of health to all members of society.⁵ National frameworks and strategies for improving child healthcare as a special area of concern have been produced, along with much supporting documentation (Department of Health, 2004; Scottish Executive, 2005). There must be few who would deny that safeguarding and improving the lives and health of children is an entirely worthy goal and indeed a crucial requirement for any society. Nonetheless, whether in all cases it trumps any additional considerations may be more open to debate, since there may be other legitimate rights and interests that may be affected. Furthermore, seeing an individual child’s health as the determining factor through an application of the best interests test may also be problematic. For example, involving children in medical research may be vital to improving care for future child patients. However, it may be of no benefit to the children participating now and may even subject them to risks. It is difficult to justify this under an approach that makes the best interests of the individual child the critical factor, especially if this prioritises his or her own health interests. While children’s health in general may be being promoted, this is not what the best interests test, as the courts use it, seems to permit. In addition, where competent children are concerned, like competent adults, they should be at liberty to decide that other factors are more important to them, even if others disagree.

In considering medical interventions, it is increasingly true that it is not only doctors that provide healthcare, as the role of nurse practitioners and allied health professionals have been substantially expanded. Healthcare now often encompasses other forms of therapies than those traditionally associated with Western medicine, such as acupuncture. There are also procedures that may in some cases have a treatment purpose, but may also have other significance and are not performed exclusively by doctors, male circumcision being one example. Many of the principles I will be exploring would be equally relevant in these situations, such as the need for parental or child consent, but some may not. The deference of the judiciary to the opinions of the medical profession has been noted in many situations (see, for example, Sheldon and Thomson, 1998; Keywood, 2001; Harrington, 2003). There have been signs of some cracks appearing in this approach with a greater willingness of the courts to advocate closer scrutiny of medical opinion and to allow that other factors may override it (Jacob, 1988; Teff, 1998; Brazier and Miola, 2000). The weight and reliance placed on medical evidence may nevertheless still be an issue. With this in mind, and for the sake of simplicity, I will be considering only healthcare interventions provided by or under the direction of registered medical practitioners and I will use the shorthand term ‘doctors’ when referring to them.

While there are many complex and fascinating ideas involved in the area of decision-making about future children, such as choices surrounding preimplantation genetic screening and embryo modification, these cannot be covered here (see, for example, Gavaghan, 2007). Instead, I am concerned only with the medical treatment of children after birth. I will also be focusing upon the position in the UK. England and Wales form a single jurisdiction, but in some matters Scotland has a separate legal tradition and deals with children and young people rather differently, providing some interesting points of comparison. By contrast, for the most part Northern Ireland adopts the same or very similar legislation to that of England and Wales and will not be referred to separately. The age of majority in both Scotland and in England and Wales is 18.⁶ However, where medical treatment is concerned, in Scotland the dividing line between adults and children is 16.⁷ References to children or young people therefore will be taken to mean people under these ages in the relevant jurisdiction unless specified otherwise. The law therefore sets ages that create the binary status of childhood and adulthood and makes some legal consequences contingent on which group a person is assigned to. A brief discussion of the kinds of legal consequences of childhood is necessary to place the best interests and the harm principle in context. Here, it will be seen that children can be regarded as having a range of rights that may be broadly categorised as rights to protection and rights to self-assertion (Bevan, 1989, p 11). The question is whether the best interests test is appropriate in deciding any issues concerning these rights.

Children’s rights

Societal attitudes towards the status of children, their need for protection and their developing autonomy are not set in stone and various approaches have been suggested for the appropriate role of children, parents and the State in making decisions concerning them. In modern times, much concentration has been placed on the importance of rights and their place in protecting minority groups and individuals. In the Western world, in particular, enforceable rights are seen as having the potential to enhance the quality of peoples’ lives and protect them from unjustified interference by others, most particularly the State. This may be seen, for example, in the growth of international instruments setting out agreements between States on rights that are regarded as being fundamental to human interests and welfare, such as the European Convention on Human Rights and Fundamental Freedoms (ECHR).⁸ More specific Conventions, such as the European Convention on Human Rights and Biomedicine (ECB)⁹ and the UN Convention on the Rights of the Child show that particular significance is placed on health and on the particular requirements of children, and indicate that more detailed consideration of them may be required than is possible in more general instruments.

Do children have rights?

Despite this interest in the development of rights principles, their application may, perhaps surprisingly, be seen as being problematic when discussing children. At a theoretical level, there have been doubts whether the concept is applicable to them (see Alston et al., 1992, especially chs 1–5; Bainham, 2005, ch 3; Fortin, 2005, ch 1). These centre on what attributes are necessary to be a rights holder. Theories known as ‘will’, ‘power’ or ‘claim’ theories, which concentrate on decision-making capacity, clearly have difficulty accommodating younger children (MacCormick, 1976; Sumner, 1987). This may be avoided by holding that a child may have rights exercised by a proxy, although it would require the proxy to do so in the way that the child would have chosen if capable (Hart, 1973, p 184). How to decide what this would be remains subject to difficulties, such as how values and preferences can be judged when a person has not had the opportunity to develop them (Archard, 2002). ‘Interests’ theories, on the other hand, suggest that rights are interests that are protected by normati...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Acknowledgements
• Table of cases
• Chapter 1 Setting the scene
• Chapter 2 Best interests and consent
• Chapter 3 Refusal of consent
• Chapter 4 Withholding and withdrawing treatment from infants and young children
• Chapter 5 Medical research and innovative treatment
• Chapter 6 Best interests between children: donation of tissues and organs and conjoined twins
• Concluding remarks
• Bibliography