Children's Rights A Decade Of Dispute

PHILOSOPHICAL AND ETHICAL ISSUES

Children's rights: a decade of dispute Jacqueline Lowden BA MSc RGN RSCN RNT DipHV Senior Lecturer, School of Health and Social Care, University of Teesside, Middlesborough, UK

Submitted for publication 24 November 2000 Accepted for publication 8 October 2001

Correspondence: Jacqueline Lowden, School of Health and Social Care, University of Teesside, Middlesborough TSI 3BA, UK. E-mail: [email protected]

LOWDEN J. (2002)

Journal of Advanced Nursing 37(1), 100±107 Children's rights: a decade of dispute Aim. This paper attempts to raise issues surrounding children's rights against a backdrop of ethical principles and their subsequent interpretation and application in practice. Method. Key words have been used to search a selection of electronic databases and a range of `grey' literature has been reviewed. Background. Over a decade ago the United Nations (1989) Convention on the Rights of the Child was rati®ed, with the exception of two member states (UNICEF 2000). The Human Rights Act (Department of Health 1998) became law in October 2000 in the United Kingdom (UK). Despite a decade of recommendations, guidelines and legislation, children's rights, particularly consent to health care, remain complex and inconsistent. As we move into a new era of human rights involving all members of society, it is timely for nurses in the UK to re¯ect on the challenges created in attempting to interpret the philosophy of such legislation because such complexity surrounds the interpretation of human rights for many other vulnerable clients within health care. Findings. The interpretation of children's rights continues to be in¯uenced by the evolution of the meanings of childhood. Adults view children's rights from multiple perspectives of best interest, which are determined by their beliefs about children's ability to understand and consent to health care and treatment. An ability and right to consent appears not to be balanced by the right to withhold consent. Inconsistency and ambiguity persist in the law and its interpretation. Adults need to develop a more pragmatic approach to children's rights. This requires better understanding of children and their experiences of health care. Conclusion. Until adults develop a more pragmatic ideology in relation to children's rights then a true respect for children's autonomy will not be achieved. Consent will therefore remain an adult and legal prerogative. Keywords: children's rights, consent, autonomy, competence, United Kingdom, health care, treatment, ethics, law

Introduction The Human Rights Act (Department of Health 1998) became law in the United Kingdom (UK) in October 2000. It incorporates into domestic law the European Convention on Human Rights, to which the UK has been committed since 1951. Over a decade ago the United Nations (1989) Convention on the Rights of the Child was rati®ed [with the 100

exception of the United States of America (USA) and Somalia] and it is perhaps timely for nurses to re¯ect on the challenges created in attempting to enact the philosophy of such recommendations, guidelines and legislation. This paper examines the many issues that compound the complexity surrounding children's rights in the UK, with particular reference to consent and child health care, because such complexity surrounds the interpretation of human rights Ó 2002 Blackwell Science Ltd

Philosophical and ethical issues

for many other vulnerable clients within health care. The literature regarding children's rights, consent to health care and treatment will be reviewed. The synergy of these two issues is proposed, as the approach to children's rights and the social and historical ideologies which underpin this are fundamental to, and in¯uential in, children ultimately achieving self-determination. The approaches adopted to children's rights and adult beliefs about this concept in the UK have their origins in the evolution of the child and childhood. It is suggested that this history continues to in¯uence attitudes to children in society and contemporary health care practice. In England, the Children Act (Department of Health 1989) brought radical changes and has been the basis for the largest reform of children's law. The key concept of the Act is that the child's welfare is the paramount consideration. However Lansdowne (1996) points out that the phrases used in the legislation, such as `best interest and welfare', are invariably de®ned by adults. In this article I intend to discuss the multiple paradigms of `best interest' in relation to children's rights and self determination and to argue that this is not a static concept but will change overtime, not only with chronological age but also with children's experience. Children's nurses are faced with diverse situations and challenges in addressing the changes that children's rights and historically changing ideas of childhood have created. Modern children's nursing covers many activities that take place in a variety of settings. In addition, increasing possibilities in children's care created by nursing, medical knowledge and technology have in turn created many ethical dilemmas (Campbell & Glasper 1995).

Background Beauchamp and Childress (1989) describe a framework for moral reasoning that includes a hierarchical structure beginning with moral judgements described as level one. Level two describes values, level three principles and level four ethical theories. Richardson and Webber (1995) suggest using a set of principles of ethics rather than an ethical theory, which may be dif®cult to apply. Therefore two ethical principles will be used in facilitating this discussion, namely those of justice as fairness and respect for autonomy. The development of children's rights will be discussed within the context of changing ideas of childhood and children's status. The relationship between autonomy and competence will be examined and considered in relation to the legal and ethical criteria of competence in children, and the factors which may in¯uence this. Rights have been de®ned as justi®ed claims that require action or non-action

Children's rights: a decade of dispute

from others, that is rights require positive or negative duties to others (Richardson & Webber 1995). Both positive and negative health care rights can be found in health care issues, and a right to health care is a positive right grounded in the principle of justice. The right not to be operated upon without informed consent is a negative right based on the principle of respect for autonomy (Beauchamp & Childress 1989). The rights of children and young people received world wide attention in 1989 when the United Nations (UN) Assembly adopted the Convention on the Rights of the Child (Richardson & Webber 1995). This was a strong indicator of the increased formal societal emphasis being given to participation and autonomy or self determination rights for children, in balance with protection and nurturance rights (Hart 1991). Justice is concerned with fairness and we try to ensure justice or fairness for everyone through the legal system and related structures (Campbell & Glasper 1995). Fairness can be de®ned by the degree to which someone's rights are respected and acted upon. Rights de®ne what we can fairly expect in relationships with others and in day to day living (Campbell & Glasper 1995).

Children's rights and childhood The basic rights of children have been codi®ed in the United Nations Convention on the Rights of the Child (Newell 1993). Archard (1993) suggests that this is an area of ethics in which thinking has evolved greatly in recent years. De®nitions of children's rights and debates around them are reliant on two concepts, one of childhood and one of rights. The concept of childhood and child are relatively recent achievements in the UK (Hart 1991). Prior to the 16th century most children were considered to be small adults once they were over the age of six and subsequently were not viewed separately from adults (Aries 1962, Plumb 1972). Hart (1991) describes much of the early UK history of childhood as a `grim period', with parents exercising unlimited power over their children (Pappas 1983). Between the 16th and 18th century changes occurred in the nature of the property status accorded children. Initially children were viewed as chattels, valued for contributing to family work and supporting parents in their old age (Hart 1991). Stone (1977) notes the harsh upbringing of children in this period of time and how this in turn produced distrustful and cruel adults prone to hostility. By the 18th century children in the UK began to be cared for as valuable and vulnerable property and the 19th century marked greater separation from adults, as a special and

Ó 2002 Blackwell Science Ltd, Journal of Advanced Nursing, 37(1), 100±107

101

J. Lowden

vulnerable class in need of protection (Stone 1977). This fostered a child-saving era to assure the health and welfare of children. During the 20th century the child was valued as a potential person, child orientated family life emerged and external forces began to in¯uence family life (Hart 1991). The latter part of the 20th century saw the emergence of children as having status as a person with the advancement of child protection rights in public attention and service delivery (Hart 1991). Rogers and Wrightsman (1978) propose that the emerging status of children as human beings and not objects of concern has been of great signi®cance. It has provided justi®cation for rights to protection and signi®cant to the focus of discussion rights to self-determination. Child bearing and child rearing practices have in¯uenced this process along with economics, work and educational changes. The educational setting has the potential to nurture the person status of children by developing competencies for the child's future as an adult through the use of a balanced, broad-based, holistic curriculum as recommended in article 29 of the United Nations Convention on the Rights of the Child. As self-determination assumes greater importance for children, the educational setting should provide opportunity both to acquire and practise the skills required, enabling the child to become self determining, and educating a future generation of parents. An increase in awareness of human rights has subsequently increased the degree to which children are considered to be persons (Melton 1983).

Respect for autonomy Autonomy is de®ned as the ability of a person to make self determining choices, and is derived from a Greek word meaning self governing. It involves independence and decision making (Edwards 1996). In health care ethics the principle of respect for autonomy means that people should be respected and that they have the capacity to reason and make decisions which concern their own future (Edwards 1996). It has been suggested that the principle of respect for autonomy is the most fundamental of moral principles (Harris 1985, Benjamin & Curtis 1986, Downie & Calman 1987). If an autonomous decision is overruled then health care professionals must be able to provide justi®cation in support of their actions, the onus of justi®cation lying with those who seek to rule the autonomous decisions of others (Edwards 1996). Autonomy is seen to be both desirable and psychologically healthy and interventions by health care professionals should aim to enhance the capacity of clients to be autonomous (Seedhouse 1988). 102

There may, however, be situations in nursing where it is not possible to foster autonomy or develop the autonomy of clients. One such situation may be that of informed consent in young children. However, if autonomy is assessed on the basis of having the capacity to reason and make decisions which concern the future, then there is evidence that young children can do this if given time, relevant explanations and the opportunity to do so (Alderson 1990, Alderson & Montgomery 1996a, 1996b, Edwards 1996). Respect for the dignity and autonomy of the individual in a health care setting can be seen in the need to obtain informed consent (Campbell & Glasper 1995), which requires that the child is competent (Alderson 1993, Alderson & Montgomery 1996a, 1996b). However many texts in nursing do not attempt to distinguish the concepts of autonomy and competence (Benjamin & Curtis 1986, Seedhouse 1988, Melia 1989). Beauchamp and Childress (1989) do distinguish between the two concepts and suggest that, while autonomy refers to a general capacity of an individual, competence refers to an ability to perform speci®c tasks. The relevance of this distinction in nursing practice is that the competence of the client is crucial (Edwards 1996). Therefore to give informed consent to undergo treatment or care, the client must be competent to perform the task of making the decision (Edwards 1996). Thus the concepts of autonomy and competence, though related, are distinct (Edwards 1996). Potentially a young child could be autonomous but, in order to be competent to consent to treatment or care, they will require relevant information and opportunity for explanations, as well as time to ask questions and hence to discuss and develop relevant knowledge. It is the adult's perception of relevant knowledge that may inhibit competence being developed in the child if information is withheld in their `best interest', or conveyed in terms which are unfamiliar or overly complex. Parents may need to be encouraged to have the con®dence to permit their children to be involved in decisions and not to be over protective or over fearful for them (Alderson & Montgomery 1996a, 1996b). Failure to hear what young people have to say can result from adults' unwillingness to listen, rather than children's inability to express their views. In a study by Hill and Tisdall (1997), many more children thought that they could and should be more fully involved in decisions affecting them than actually were. The unjust inconsistency in involvement of children poses urgent questions, as at present some doctors involve young children in complex serious decisions while others exclude arguably mature young adults (Montgomery 1992). Children's rights may be approached in different ways, and the National

Ó 2002 Blackwell Science Ltd, Journal of Advanced Nursing, 37(1), 100±107

Philosophical and ethical issues

Children's Bureau (NCB) (1992) discuss three main approaches: protectionist, liberationist and pragmatist (National Children's Bureau 1992).

NCB approaches to children's rights The protectionist approach The protectionist approach sees the role of adults as guardians and defenders of children. This relates to the previous discussion of childhood and the child-saving era, re¯ecting the attitude that children should be protected from themselves for their own good (Fulton 1996). This view of children's rights in relation to autonomy and speci®cally to consent to treatment by children assumes that young children are incompetent. An obligation of rati®cation of the UN Convention is that member states must report to the UN within two years on the progress made with implementation. The ®rst UK report re¯ects protectionist ideology supporting the view that young children are unable to make decisions (Fulton 1996). The emphasis appears to be on parents as consumers of health care, which marginalizes and objecti®es children (Fulton 1996). This does not re¯ect the ideology of British law, re¯ected in the Children Act (Department of Health 1989), which clearly identi®es that children are not objects of concern. The ethos of the Act is to listen to the wishes and feelings of the child and to respect children's individuality (Mitchels & Prince 1992). The liberationist approach The liberationist approach views children as an oppressed minority group, deprived of civil rights (Franklin 1986, Hill & Tisdall 1997) who are repressed and subservient to the authoritarianism within institutions such as health services (Fulton 1996). This approach identi®es the greater abilities children are believed to have and that go unrecognized in British culture (Fulton 1996, Hill & Tisdall 1997). Children believe the messages they receive about themselves and thus the lack of recognition becomes a self ful®lling prophecy (Fulton 1996). Liberationists think that children should be empowered by not treating them like children. Although this may seem a bizarre statement, research has shown that even infants can display sophisticated reasoning powers and understanding of complex human relationships (Dunn 1988, Alderson 2000a). Criticism has been leveled at liberationist thinking as it fails to recognize empirical child development knowledge and evidence that children do require protection. However research with seriously ill young children shows that they

Children's rights: a decade of dispute

can show mature understanding and coping in discussing complex and painful knowledge (Bluebond-Langer 1978, Alderson & Montgomery 1996a, 1996b). This evidence supports the proposal that experience is far more salient than age in determining children's understanding (Alderson & Montgomery 1996a, 1996b). The pragmatist approach The pragmatist approach to children's rights is a balance between protectionism and liberationist ideas, and recognizes the protection needed for children while allowing ¯exibility for the child's emerging knowledge (Fulton 1996). Maintaining a balance between protection and self determination rights may help to overcome con¯icts, confusion and problems between the diverse approaches to viewing children's rights (Hart 1991). A positive ideology regarding children is important because it values them for what they are, and can become. In addition to what they can do for themselves and others, a positive approach may be the essential missing ingredient necessary to the children's rights movement (Melton 1983, Gil 1987, Hart & Brassard 1987). A positive ideology could serve as the primary standards framework against which to judge child treatments, with active involvement of children in establishing their needs and rights (Hart 1991), thus facilitating opportunities to become autonomous.

Consent and the law in the UK It is important to evaluate the legal situation with regard to children and informed consent as it represents dif®culties and challenges for children, their families and health care professionals. It appears from the literature that the UK law regarding consent by children has recently taken several retrograde steps, regressing to a protectionist approach in viewing children's right to make informed consent (Deeprose 1992, Fulton 1996). Under section eight of the 1969 Family Law Reform Act, 16 and 17-year-olds were treated as if they were of full age and would not require parents or guardians agreement to treatment and health care (Deeprose 1992). In 1986 the House of Lords ruling on the Gillick case, which disputed the rights of young people to consent to contraceptive advice and treatment without their parents knowledge, gave similar rights to children under 16. It stated that young people were allowed to make decisions about medical treatment, as long as they were mature enough to understand the implications of the treatment and were competent to make such a decision (Gillick v West Norfolk & Wisbech Area Health Authority 1986). The Children Act (Department of Health 1989) recognized that competent children in local authority care have the right

Ó 2002 Blackwell Science Ltd, Journal of Advanced Nursing, 37(1), 100±107

103

J. Lowden

to refuse medical or psychiatric treatment. The United Nations Convention on the Rights of the Child (article 12) also acknowledged children's right to freedom of expression and of conscience (Newell 1993). Collectively interpreted, this gives children many rights to make decisions for themselves and have their opinions listened to about medical treatment, religious beliefs and a range of other issues (Alderson 1992). However several legal cases have challenged children's rights in these areas (Deeprose 1992). In 1991 the Court of Appeal ruled that `R', aged almost 16, could not refuse mental health treatment and could be forced to have medication (Alderson 2000b). Dyer (1999) cites the case of `M' a 16-year-old girl forced against her will to have a heart transplant. Perhaps the most potentially damaging is the case of a 16-year-old girl known as `J' who suffered from anorexia and had her refusal of consent to treatment overturned by the Court of Appeal, despite being deemed competent by the court (Deeprose 1992). The Appeal Court ruling on `J' has created potential confusion for all those who work with children, including health care professionals. All of the cases cited re¯ect protectionist adult attitudes to children's rights. Thus, even when the criteria of competence to make informed health care decisions have been established, the notion of a child's right to exercise control over their own destiny is negated (Deeprose 1992). Although Gillick v West Norfolk & Wisbech Area Health Authority (1986) was seen as a landmark decision in support of children's rights it has been interpreted in different ways by others. Montgomery (1988) views it as a transfer of legal power away from parents to children but Bainham (1988) argues that a more appropriate interpretation is that, within health care, the power was given not to the child but to the doctor. Most signi®cantly, the retreat from the Gillick commitment concerns the right to consent or veto treatment or care (Alderson & Montgomery 1996a, 1996b), and demonstrates how weak and fragile the autonomy rights of young people are, as they can be easily overridden (Alderson & Montgomery 1996a, 1996b). Even where young people are competent to consent to health care, their refusal of care does not prevent parents and the courts giving effective consent on their behalf. A doctor needs only one valid consent to make treatment lawful and this effectively means that young people have the right to consent to treatment but not to refuse it (Montgomery 1992). Although this may appear ridiculous, it seems that it is not incoherent as a legal doctrine and is widely accepted by the judiciary (Montgomery 1993). The paternalistic `best interest' attitudes re¯ected by the protectionist standpoint on children's rights is further illustration of the weakness of 104

children and young people's rights to autonomy in health care and treatment. It appears that current UK law and its interpretation concerning the rights of children to consent to treatment and care supports medical and judicial authority. Competence confers autonomy by enabling young people to consent to treatment. However, if they refuse treatment the doctor can rely on parents or the courts for authorization. Judges are prepared to override the views of the young person but not to force doctors to treat patients against their clinical judgement. Deveruex et al. (1993) argue that the retreat from Gillick v West Norfolk & Wisbech Area Health Authority (1986), as described by Alderson and Montgomery (1996a, 1996b), contradicts the spirit of the Children Act (Department of Health 1989). This in turn sets a high penalty for refusing treatment or care as opposed to consenting to it (Deveruex et al. 1993). A right to give consent must also mean a right to refuse; otherwise consent could be seen as no more than the right to agree with the medical practitioner. Being found rational for the purpose of consent seems to be dictated on the basis of accepting the doctor's proposal (Roth et al. 1977, Dickenson 1991). Two debatable points emerge from this: ®rst, that the doctor is correct in their opinion of what is `best' for the patient and second, that treatment without consent will help the patient (Deveruex et al. 1993). Consent must be real, that is obtained freely, without pressure and with understanding of the implications of what is being consented to (McHale et al. 1998). Written consent is used in health care settings and takes the format of a speci®c consent form. Nurses are familiar with consent forms given to patients to sign prior to surgery or speci®c investigations and procedures (McHale et al. 1998). However while a consent form may provide evidence that the patient has consented it does not in itself make the consent legally valid. Lansdowne (1996) identi®es how the majority of parents attending a hospital parent group claimed to have no recollection of having signed a consent form. Byrne et al. (1988) found that 40% of patients who had signed a consent form had little idea of what they had signed for. If informed consent is not obtained then the document is legally of no value (McHale et al. 1998). The Department of Health (DOH) (1989) advises that children are deemed competent to consent to treatment or care if they demonstrate enough maturity to understand the signi®cance of the ethical, social and emotional aspects of their situation (Montgomery 1993). Formally signing the consent form is a step beyond consenting in principle. Several young patients in Alderson's (1992) study said they wished to consent to surgery, but not to sign the form thus signifying

Ó 2002 Blackwell Science Ltd, Journal of Advanced Nursing, 37(1), 100±107

Philosophical and ethical issues

the desire to be involved and informed but with support from adults. A consent form can be assumed to demonstrate blanket consent to the whole package of care from admission to discharge, and this can prevent staff from seeing that in the child's eyes each step is a separate procedure (Alderson & Montgomery 1996a, 1996b). Scarce time and resources, practical problems such as lack of time or of a quiet place to talk have been cited as reasons why time is not spent seeking children's consent (Alderson & Montgomery 1996a, 1996b).

Maintaining a balance The criteria for competence for children to consent present many problems and dif®culties. Children can be informed and competent given time and experience (Alderson & Montgomery 1996a, 1996b), but this can be dependent on the motivation and communication skills of the adults involved and their beliefs about children's rights (Fulton 1996). Motivation may vary according to adults' ideology about children and their rights and whether they perceive themselves as guardians to children who require protection. Some experts who assess children's competence assume that all children are incompetent, and that referral to them would be as unjust as sending people to a court in which the jury assumes that all defendants are guilty (Alderson & Montgomery 1996a, 1996b). Fulton (1996) proposes that the way forward would be for nurses to develop a precautionary principle that children are presumed competent unless an adult can demonstrate otherwise. This challenges protectionist attitudes and requires liberationists to prove their case in practice. However if this practice were to be established then it would require support from a legal framework and philosophy which, as previously discussed in the `J' case, does not overturn the autonomous choices made by competent children (Montgomery 1992). Arguably, a process which allows for refusal or acceptance of treatment must also be visible. Making autonomous choices does not necessarily mean deciding in lonely isolation without support, but may encompass having a greater or lesser share in deciding or choosing to defer to others (Alderson & Montgomery 1996a, 1996b). The essential would appear to be the inclusion of the child, with their wishes and feelings being sought and acknowledged in the decision making process (Rose 1997), which is the very spirit of the Children Act (Department of Health 1989). Thus adults have responsibilities not rights, and the child has choice but this is not unrestricted, and they have to choose wisely (Hoggett 1996). This demonstrates a

Children's rights: a decade of dispute

more pragmatic approach to facilitating children's choices, rather than dictating them (Hoggett 1996). Alderson's (1993) study demonstrated that respect for autonomy can mean supporting people as far as they want to go, and trying not to impose on children through over involvement or exclusion. The aim is participation and not necessarily full autonomy, if that is what the child chooses, and nurses can be in¯uential in supporting children in the process of consent (Clayton 2000). This offers a more pragmatic approach to respecting the child's right to self determination but allows children to enjoy the luxury of childhood, that is, to defer responsibility to adults when they feel they cannot or do not want to make decisions or to be responsible for choices. If an enthusiastic liberationist stance was to be adopted there would be a danger of children being denied this luxury. Competence is not dictated by chronological age, and increasingly the ideas of psychologists that childhood can be characterized by a series of stages has been challenged (Hill & Tisdall 1997, Alderson 2000a). The classical frameworks of the psycho-social and cognitive development of children are separated by particular age spans and sharp transitions, with no acknowledgement of how children's experiences can alter or affect these transitions (See for example, Piaget 1952, Erikson 1963). Children with any type of health problem to overcome grow up quickly, and greater credit should be given to their advanced maturity (Alderson & Montgomery 1996a, 1996b). Children's experience can determine their understanding more than age, and children with chronic conditions who have repeated treatment have understanding that does not consist of abstract thought but of illness, disability and treatment experience (Alderson & Montgomery 1996a, 1996b). From this experience young children understand the value of life and can weigh up alternatives and express consistent values based on a ®rm sense of identity, thus demonstrating the moral and rationale basis of wise decision making. Therefore to test competence in the abstract without reference to the circumstances may be misleading (O'Neill 1984). These issues are exempli®ed by the moving account of a mother whose daughter, was born with biliary atresia (Irwin 1996) and subsequently died at the age of six. The child demonstrated a knowledge and ability in managing her treatment and condition superior to her chronological age, yet she could not write her name or count past 10. The account of this child's life and death identi®es the need to view and assess situations from the child's perspective and to identify what is in the child's best interest. It also highlights the importance of learning to listen to children's views in

Ó 2002 Blackwell Science Ltd, Journal of Advanced Nursing, 37(1), 100±107

105

J. Lowden

whatever way they are capable of articulating them, but also of being able to reason at a child's level with adult knowledge (Irwin 1996). Laws that allow treatment to be forced on non-competent children appear to assume that they have no understanding worth considering. However very young children do reason and can perceive unexplained treatment as assault and as far more damaging than the disease it is intended to treat (Alderson & Montgomery 1996a, 1996b). This opens a credibility gap between the child's perception of harm and the adult's intention of bene®t. The problem is also illustrated in a quantitative study by Southall et al. (1993), which examined the frequency and effects of invasive procedures in children receiving intensive care. The study concluded that children having prolonged intensive care are more likely to die, survive with serious neurological problems or behave as if they have suffered non-accidental injury (Southall et al. 1993). This concurs with Alderson and Montgomery's (1996a, 1996b) ®ndings regarding children's perceptions of unexplained treatment as assault. It was also apparent from Southall et al.'s study that children received inadequate analgesia and sedation, further demonstrating a lack of understanding of children's needs. There appear to be many reasons why informed consent is not sought from children, but perhaps the greatest obstacles arise from adult prejudices about their abilities and the protectionist view of the rights they can or do have. At present childhood belongs to children least of all (Hill & Tisdall 1997) and its study remains largely a study of adults' attitudes to and practices with children. Children are not human becomings they are human beings at birth and they have particular views about their own status. Children are people in their own right and as such should be recognized as having rights (Qvortrup et al. 1994).

Conclusion Both the Children Act (Department of Health 1989) and the United Nations Convention on the Rights of the Child (1989) stressed the importance of listening to children and taking their views seriously, however doctors and nurses are uncertain whether they should respect children's wishes or whether they risk breaking the law by doing so. Case law in the UK focuses on the end point of decision making, that is consent, instead of the process of sharing information through the stages of investigation, diagnosis and considering treatment options. This amounts to an all or nothing approach, which confers full legal status on competent people but does not attend to participation when patients are partly involved and can in¯uence rather than make decisions. 106

Effective training for health care professionals would address common attitudes and prejudices about children's rights and thus would promote greater respect for the autonomy of children. As a consequence, better judgements could be made regarding children's competence to consent to treatment and care. However this challenges adults' need to feel in control, and requires the acquisition of practical skills in listening to children. Within the UK, law that amounts to defensive practice has been detrimental to the best interests of the child; however professional anxiety about litigation may allow this situation to continue. The law should provide a clear framework comprehensible to professionals, parents and young people, and should be ¯exible enough to allow scope for professional judgements. The focus of responsibility would be on adults to demonstrate the child to be incompetent, rather than the child to pass tests of competence which many adults might fail. It appears that in the UK the historical evolution of childhood continues to in¯uence children's rights. In turn, adult beliefs about children's rights in¯uence children's opportunities for self determination. Until adults develop a more pragmatic ideology regarding children's rights, then a true respect for children's autonomy will not be achieved and consent will remain an adult and legal prerogative. Children will not be facilitated to develop competence and thus the process of `best interests' will continue to be de®ned from a protectionist adult perspective.

References Alderson P. (1990) Choosing for Children Parents' Consent to Surgery. Oxford University Press. Alderson P. (1992) Everyday and medical life choices: decision making among eight to ®fteen-year-old school students. Child: Care, Health and Development 18, 81±85. Alderson P. (1993) Children's Consent to Surgery. Open University Press, Buckingham. Alderson P. (2000a) Young Children's Rights Exploring Beliefs, Principles and Practice. Jessica Kingsley Publications. Alderson P. (2000b) The rise and fall of children's consent to surgery. Paediatric Nursing 12, 6±8. Alderson P. & Montgomery J. (1996a) Health Care Choices Making decisions with children. Institute for Public Policy Research. Alderson P. & Montgomery J. (1996b) What about me? Health Service Journal 11, 22±24. Archard D. (1993) Children: Rights and Childhood. Routledge, London. Aries P. (1962) Centuries of Childhood: A Social History of Family Life. Knopf, New York. Bainham A. (1988) Children, Parents and the State. Oxford University Press. Beauchamp T. & Childress J.F. (1989) Principles of Biomedical Ethics, 4th edn. Oxford University Press.

Ó 2002 Blackwell Science Ltd, Journal of Advanced Nursing, 37(1), 100±107

Philosophical and ethical issues Benjamin M. & Curtis J. (1986) Ethics in Nursing. Oxford University Press. Bluebond-Langer M. (1978) The Private Worlds of Dying Children. Princeton University Press, Princeton. Byrne D., Napier A. & Cushieri A. (1988) How informed is signed consent? British Medical Journal 296, 839±841. Campbell S. & Glasper E.A. (1995) Whaley and Wong's Children's Nursing. Mosby. Clayton M. (2000) Consent in children: legal and ethical issues. Journal of Child Health 4, 78±81. Deeprose M. (1992) Children's consent is a law unto itself. BMA News Review September, 19±20. Department of Health (1989) The Children Act. HMSO, London. Department of Health (1998) The Human Rights Act. HMSO, London. Deveruex J.A., Jones D.P.H. & Dickenson D.L. (1993) Can children withhold consent to treatment? British Medical Journal 306, 1459± 1461. Dickenson D. (1991) Moral Luck in Medical Ethics. Gower Aldershot. Downie R.S. & Calman K.C. (1987) Healthy Respect. Faber and Faber, London. Dunn J. (1988) The Beginnings of Social Understanding. Blackwell, Oxford. Dyer (1999) English teenager given heart transplant against her will. British Medical Journal 319, 209. Edwards D. (1996) Nursing Ethics. A Principle-Based Approach. Press Limited. Erikson E. (1963) Childhood and Society. Norton, New York. Franklin B. (1986) The Rights of Children. Blackwell, Oxford, Basil. Fulton Y. (1996) Children's' rights and the role of the nurse. Paediatric Nursing 8, 29±31. Gil D. (1987) Maltreatment as a Function of the Structure of Social Systems. Pergamon, New York. Gillick v West Norfolk & Wisbech Area Health Authority (1986) Appeal Cases 112±207. Cited in Deveruex J.A., Jones D.P.H. & Dickenson D.L. (1993) Can children withhold consent to treatment? British Medical Journal 306, 1459±1461. Harris J. (1985) The Value of Life. Routledge, London. Hart S.N. (1991) From property to person status historical perspective on children's rights. American Psychologist 46, 53±59. Hart S. & Brassard M. (1987) A major threat to children's mental health: Psychological Maltreatment. American Psychologist 42, 160±165. Hill M. & Tisdall K. (1997) Children and Society. Longman, London and New York. Hoggett B. (1996) Mental Health Law, 4th edn. Sweet and Maxwell, London. Irwin C. (1996) Samantha's wish. Nursing Times 4, 30±31.

Children's rights: a decade of dispute Lansdowne R. (1996) Children in Hospital A Guide for Family and Carers. Oxford University Press. McHale J., Tingle J. & Peysner J. (1998) Law and Nursing. Butterworth, Heinemann. Melia K. (1989) Everyday Nursing Ethics. MacMillan, London. Melton G. (1983) Toward `personhood' for adolescents: autonomy and privacy as values in public policy. American Psychologist 38, 99±103. Mitchels B. & Prince A. (1992) The Children Act and Medical Practice. Jordan and Sons Limited. Montgomery J. (1988) Children as property? Modern Law Review 51, 323±342. Montgomery J. (1992) Parents and children in dispute: who has the ®nal word? Journal of Child Law April, 85±89. Montgomery J. (1993) Consent to health care for children. Journal of Child Law 5, 117±124. National Children's Bureau (1992) Highlight No 113. An Introduction To Children's Rights. London. Newell P. (1993) The UN Convention and Children's Rights in the UK, 2nd edn. National Children's Bureau. O'Neill O. (1984) Paternalism and partial autonomy. Journal of Medical Ethics 10, 173±178. Pappas M. (1983) Law and the Status of the Child. United Nations Institute for Training and Research, New York. Piaget J. (1952) The Origins of Intelligence in Children. International University Press, New York. Plumb J.H. (1972) The Light of History. Allen Lane, London. Qvortrup J., Bardy M., Sgritta G. & Wintersberg H. (1994) Childhood Matters. Avebury, Aldershot. Richardson J. & Webber I. (1995) Ethical Issues in Child Health Care. Mosby. Rogers C.M. & Wrightsman L.S. (1978) Attitudes towards children's rights. Journal of Social Issues 34, 59±68. Rose P. (1997) Best intersets versus autonomy: a model for advocacy in child health care. Journal of Child Health Care 1, 74±77. Roth L.H., Meisel A. & Lidz C.W. (1977) Tests of competency to consent to treatment. International Journal of Law and Psychiatry 134, 279±284. Seedhouse D. (1988) Ethics the Heart of Health Care. John Wiley, Chichester. Southall D., Cronin C., Hartmann H., Harrison-Sewell C. & Samuels M.P. (1993) Invasive procedures in children receiving intensive care. British Medical Journal 306, 1512±1513. Stone L. (1977) The Family, Sex and Marriage in England, 1500± 1800. Harper & Row, New York. UNICEF (2000) http: //www.unicef.org/crc/convention.htm. United Nations (1989) Convention on the Rights of the Child. United Nations. Cited in Newell P (1993) The UN Convention and Children's Rights in the UK, 2nd edn. National Children's Bureau.

Ó 2002 Blackwell Science Ltd, Journal of Advanced Nursing, 37(1), 100±107

107