Moli Paul is a senior lecturer in child and adolescent psychiatry at the University of Warwick (Division of Health in the Community, Warwick Medical School, Coventry CV4 7AL, UK. E-mail: moli.paul{at}warwick.ac.uk) and an honorary consultant with South Warwickshire Primary Care Trust. Her research interests include consent, individual and group-based health care decision-making and the comparison of adults and minors decision-making.
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Clinicians should work within the law and organisational (NHS) contracts, and pay heed to professional and general health care ethics and guidelines. The requirements of these usually overlap but may sometimes be different or even contradictory. Consequently, although this article is primarily about ethical deliberations, the law and guidance documents will also be considered.
The term child will be used to cover children and young people, and to denote a relationship (the child of his parents). The legal term minor will be used to denote an individual under 18 years of age, when the separate status of individuals under the age of majority is emphasised.
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Within multidisciplinary CAMHS, differing professions may use differing terminology (patient, service user, client) or the terms may be used interchangeably. Terminology is important because different concepts should be associated with differing rights and claims and therefore differing responsibilities and duties. It cannot even be assumed that all professionals in CAMHS share the same professional ethics or the scope and limits of concepts such as duty of care. The need for shared ethics has been identified but remains a challenge for service providers (Tavistock Group, 1999). For this reason, it should be noted that this article is written by a psychiatrist.
The bipartite decision-making partnership between patients and their health care professionals is complicated in CAMHS as minors have parents or carers, making the relationship at least tripartite. The strong emotional bonds between child and parent, including the parents deep personal interest in the childs future and the parents knowledge of the child and the childs situation, are proposed by some as reasons for suggesting that parents are the most appropriate and primary decision-makers about their childs best interests (Rachels, 1989). At times, such reasoning may be invalidated, for example when there are child protection issues or when the child is capable of balancing her present and future needs. At a practical level, parental support and cooperation are required for most health care interventions to be effective.
For all these reasons there may be times when it is unclear to whom a duty of care is owed. If a duty arises from the special doctorpatient relationship, the clearest duty is that to the child as the referred patient. It is less clear whether parents and siblings count as patients. Parents may be brought within this special relationship when they act as their childs proxy decision-maker, advocate or representative. CAMHS professionals might argue that a duty of care to the child implies some duty of care to the childs family.
If a duty of care correlates with the rights of others, then parents and siblings, as service users and individuals given professional advice, have negligence-related legal rights. What is unclear is whether they can claim that a clinician should act for their benefit when their child/sibling (and not they themselves) has been referred to that clinician.
Balancing duties to minors with duties to their parents/siblings
When, as is often the case, the benefit of the referred child and of other family members coincide, identifying distinct duties may be pointless. It is only when benefits do not coincide, and may even entail disadvantage or harm to other family members, that distinctions become important, for example if a mother is advised to spend individual time with one child, but does not have enough time do the same with her other three children, the other children are disadvantaged. Under such circumstances consideration of who can consent does not help us to do the right thing, as the real issue is one of justice (Graham & Foreman, 1995), i.e. whose interests/rights ought to take priority.
Best interests
When a court determines any question with respect to the upbringing of a child, the childs welfare should be the courts paramount consideration (Children Act 1989 (hereafter called the Children Act), s1.1). This welfare is often referred to in terms of the childs best interests.
The best interests principle is often evoked when decision-makers disagree about what should happen to a child. It can be very helpful, allowing benefits and harms to be balanced, although it is not without problems: children have different interests (Box 1
) that may clash; decision-makers may hold differing values (Fulford et al, 2002) or hold conflicting views about how to balance welfare.
| Box 1 The interests of children Within Section 1 of the Children Act 1989 it is stated that when a court determines any question concerning a childs upbringing, the childs welfare shall be paramount and that under the powers of the Act the court shall have regard to the following:
Eekelaar (1986) categorised the interests of children as follows:
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For example, basic and developmental interests may or may not be valued by children but are usually valued by adults on childrens behalf and by those adults for their own sakes (most parents would not want to lose their child). Interests that promote benefit may be counted twice (the interests of the current child and the interests of the adult-to-be). Childrens views of what is in their own best interests may be discounted as being age-specific and therefore transient. However, age-specific values often fulfil developmental needs and should not be discounted provided they are value-based decisions and not just preferences (Ekman Ladd & Forman, 1995). Childrens basic and developmental interests may be valued more by adults than childrens autonomy interests (Eekelaar, 1986) although this has been criticised, as it may subjugate respect for childrens choices, worth and dignity and emphasise normal, natural and needs rather than context, culture and competencies (Alderson, 2000: p. 55).
The welfare principle has differing applications in public and private law and should not be considered limitless (Bainham, 1998). For example, it does not apply to adult issues such as divorce, even where these affect children. It only comes into play when significant harm has been established in public proceedings (e.g. in the form of care orders under the Children Act 1989) and in the juvenile justice system, it is balanced against the safety of the public.
The concept of best interests is only applied to adults who lack capacity (Re F (Mental Patient: Sterilisation) [1990]) but can be applied to all minors regardless of their capacity. This raises the following questions:
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The United Nations Convention on the Rights of the Child 1989 and the Children Act grant the child participatory decision-making rights. Providers of health care are thereby obliged to give minors any information necessary to enable their full participation in decision-making about matters that concern them, although it does not mean that children must be the final decision-makers (Lansdown, 2000). The European Convention on Human Rights 1950 and the Human Rights Act 1998 do not specifically mention childrens rights but do permit minors consent to be seen from a rights perspective by acknowledging the role of third parties (children) in cases between adult individuals (the childs parent(s)) and the state (Fortin, 1998). Although the Mental Health Act 1983 can be applied to minors, it does not apply to children treated in the community, and therefore rights flowing from this Act will not be discussed here.
To be meaningful, rights must be enforceable (Montgomery, 1992). In relation to health care this might be better achieved by extending to minors the law related to adult consent rather than by adding to the rights that children can claim because of their legal minority (Masson, 1991), and by acknowledging children as persons with rights rather than objects of concern. However, giving children adult rights might undermine their well-being by undermining the family, the very structure within which their interests are most likely to be maximised (Ross, 1998).
Parents rights
In relation to their childrens health care, parents have:
A proxy decision-maker is no longer required once a child can consent for herself. A representative is not required when the child can advocate for herself and can directly claim legal and political rights. Parental rights may last as long as the legal duration of parenthood but parents rights as individuals continue indefinitely. Legally, it is the concept of parental responsibility (Box 2
) that is the most pertinent to consent, especially as not all parents automatically have parental responsibility but some non-parents do.
| Box 2 Definitions Parental responsibility (Children Act 1989)
Who has parental responsibility?
The inherent jurisdiction of the High Court
Adult capacity
Minors capacity
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Balancing rights
Application of Article 12 of the United Nations Convention on the Rights of the Child should mean that childrens participatory rights are respected regardless of any legal definition of capacity (Shield & Baum, 1994). The right to have the final say, however, may be mediated through the law on consent (see below). A conflict of rights may only be highlighted when there is disagreement about treatment. There is no simple answer to how rights should be balanced. When rights collide, justice should be considered in relation to competing claims. This can be done by considering how justified, appropriate, proportionate, applicable and necessary is the overriding of each right in question. Such reasoning should be documented.
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Children should be given the time, support and advice from their parents and health care professionals to assist them with decision-making. If a child does not consider herself to be a partner in the decision-making process she will not actively participate as a decision-maker. It is therefore imperative that clinicians ensure that children and parents know about childrens participatory rights and that they facilitate childrens decision-making, even when children lack capacity to consent. Competent children should also be encouraged to involve their families in decision-making.
Having the final say may depend on who:
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it must be given voluntarily by an appropriately informed person (the patient or where relevant someone with parental responsibility for a patient under 18) who has the capacity to consent to the intervention in question (Department of Health, 2001a: p. 4).
This definition identifies three aspects of consent: capacity, information and voluntariness. Decision-making is often considered to be part of capacity. Here, it is useful to consider it as a fourth aspect of consent because of the importance of establishing whether a child is an active decision-maker.
The law on minors consent is evolving, but essentially, the following can give consent (Box 3
, Table 1
):
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View this table: [in a new window] | Table 1 Minors: who can consent? |
| Box 3 Giving consent on behalf of minors Consent for the assessment or treatment of minors can be given by any of the following:
In the absence of consent, treatment can be legal in any of the following circumstances:
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Department of Health guidance states that a competent minors refusal should be overruled very rarely but also that [a]t all times you should be guided by the best interests of the child (Department of Health, 2001b: p. 19). The childs ascertainable wishes, feelings and decisions are only part of his best interests and so clinicians may still be left in a quandary about when a minors refusal can be overruled.
Professional guidance states that,
it is unlikely to be ethically justifiable to override a young persons sustained, competent and informed refusal of treatment unless the treatment is essential to save or significantly enhance life (British Medical Association, 2001: p. 124).
This is more definite, but the scope of significant enhancement needs further discussion, especially with regard to childrens mental health.
The Department of Health and British Medical Association advice takes into account the law on minors refusal, which is of necessity based on exceptional cases that get to court (Box 4
), as there is no general statutory right for minors to refuse treatment. Significant judicial paternalism in case law subsequent to Gillick has narrowed the interpretation of Gillick, in what has been called the retreat from Gillick (Douglas, 1992):
| Box 4 Summaries of specific cases R, a 15-year-old girl, refused antipsychotic treatment for bouts of a mental illness with symptoms of violent and suicidal behaviour. At the time of refusal, the child appeared lucid and rational. The local authority felt her to be Gillick-competent and thus withdrew their consent to treatment while applying for wardship under which the treatment could be administered without Rs consent. R was deemed incompetent by the High Court judge, who none the less said that if she had been competent, her parents or the court could not overrule her refusal. The subsequent Appeal Court ruling upheld that a court acting in wardship could overrule the refusal of a Gillick-competent child and the childs parents or guardians. Lord Donaldson differentiated between capacity to consent and capacity to refuse treatment. He stated that, although the consent of either the competent child or the parents would suffice, refusal of both the child and the parents would be required for such a refusal to be valid. This contradicts the previous interpretations of Gillick, which assumed the refusal of a competent minor to be equally as valid as that minors consent to treatment, and that the importance of parents consent decreases as the capacity of the child increases. Re W (A Minor) (Medical Treatment: Courts Jurisdiction) [1992] (the child is sometimes referred to as J) The Appeal Court sought to distinguish between consent and refusal to consent to treatment. W was a 16-year-old patient with anorexia nervosa. She refused to be transferred to a specialist treatment unit but the court overruled this refusal, even though, at 16, she seemed to fall under the terms of the Family Law Reform Act 1969 (FLRA). The court quoted the argument of Lord Donaldson in Re R [1991] and considered that the FLRA did not cover refusal of treatment, only consent to treatment. The court ruled that a competent child under 18 years of age, whose refusal of treatment might result in irreparable consequences could be required to have that treatment against her will if any person with parental responsibility consents to that treatment and a doctor considers it necessary. From the age of 16, the right to consent was therefore shared with those who had the right to consent regardless of the FLRA, i.e. the parents and the court. The case revolved around three 15-year-old girls, two with unsocialised conduct disorder under secure accommodation orders and one with bipolar affective disorder for whom such an order was being sought. The hospital had parental or local authority consent for the minors admission but when the minors complained about the administration of forced intramuscular injections, the health professionals sought specific issue orders under the Children Act (s8). The judge held that, even if the children were Gillick-competent, the hospital need not seek further court approval as parental consent had been given. Re R (A Minor) (Wardship: Consent to Treatment) [1992] R, a 15 year-old-girl, under the care of a local authority, was detained under s2 of the Mental Health Act 1983 for a mental illness characterised by violent and suicidal behaviour. When, in a lucid interval, R indicated that she would refuse treatment, the authority withdrew its consent and sought wardship proceedings to permit treatment without the childs consent. Rs psychiatrist provided evidence of her capacity during the lucid phase. The judge stated that the girls mental illness precluded her from being competent (not an automatic assumption in the case of adults, see Re C (Refusal of Medical Treatment) [1994]). The Appeal Court dismissed the Official Solicitors appeal and stated that, even if a child were competent, the courts inherent jurisdiction could override her consent or refusal. Nielsen v Denmark [1989] The European Court of Human Rights held that the informal admission of a 12-year-old boy to a psychiatric hospital against his wishes but with parental consent was not a deprivation of liberty contrary to Article 5 of the European Convention on Human Rights. The reasoning was that, at 12, he was still of an age when it was normal for his mother to exercise her parental custodial rights in the interests of her child, even against his wishes.
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Even the statutory rights of minors to refuse specific assessment under the Children Act has been overridden (South Glamorgan County Council v W and B [1993]) and only the legality of reasonable force remains to be clarified (A Metropolitan Borough Council v DB [1997]). Lack of judicial respect for minors refusal is particularly evident when refusal is likely to result in irreparable harm to the minor. In contrast, adult patients may refuse treatment for reasons which are rational, irrational or for no reason (Sidaway [1985]: p. 904), even where the treatment is necessary to preserve life (Re T (Adult: Refusal of Treatment) [1993]; Re C (Refusal of Medical Treatment) [1994]).
Although these are exceptional cases, clinicians who look to judicial reasoning to inform their own clinical and ethical thinking may be concerned, despite the Department of Health and British Medical Association guidance, because it is not clear:
The current law in England and Wales may leave clinicians uncertain about what to do when the Gillick-competent child refuses but parents consent or vice versa. The American Academy of Pediatrics Committee on Bioethics (1995) sought to clarify the position in the USA and proposed seeking the informed permission (as opposed to consent) of parents and the assent of the child where appropriate, reasoning that the doctrine of informed consent can only be applied to childrens health care when the child has decisional capacity and legal empowerment. Seeking such assent is taken to include not just obtaining the patients agreement to the proposed care, but informing her about the proposed intervention and helping her to achieve a developmentally appropriate awareness of her condition. They proposed that when a child has decisional capacity and legal empowerment, the parents views and involvement should similarly be sought, where appropriate, but not when refused by the patient. This approach has not been adopted in the UK.
Practically, refusal may be the result of fear or uncertainty about the consent process, or because of specific psychopathology such as oppositional behaviour (Batten, 1996). If so, providing the relevant information or changing the source of information, for example to an ex-service user, may be helpful. In order to know whether the requirements for consent are met by children, it is necessary to clarify whether the treatment-refuser is using language of responsibility or non-responsibility (McCabe, 1996) and whether decision-making would be swayed by parents non-coercive opinions.
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The existing law suggests that it is acceptable to presume that people over 16 have capacity but those under 16 lack capacity, unless it is proven otherwise. Although there is advice on assessing capacity, there is little empirical evidence to support the above presumptions/perceptions. There have been suggestions that the age from which minors should be presumed to be able to consent should be lowered to 1012 years (Department of Health, 1999) but this has not been reflected in the draft Mental Health Bill (Department of Health, 2002), and the draft Mental Incapacity Bill (Department for Constitutional Affairs, 2003) only applies to individuals older than 16.
If we separate capacity (the legal ability of the person to consent to treatment) and competence (the clinical ability of a person to consent to treatment) (Tan & Jones, 2001), the literature on minors competence tends to mirror the law on minors capacity. Here, Aldersons (1993) three categories of tests of consent (by status, outcome or function) are useful. Tests of higher and more complex functional levels than adults capacity (e.g. Reder & Fitzpatrick, 1998) and tests of outcome (Batten, 1996) have been applied to minors.
The danger is that when children make risky choices or decisions that might result in significant harm to themselves or others (poor outcome), they are said to have failed tests for capacity/competence (tests of function) when actually they passed but their values or the outcomes of their choices were unacceptable to parents, professionals or the judiciary. This is dishonest and unjust, even if done beneficently and non-maleficently.
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This indicates inconsistent reasoning about minors decision-making rights, especially when compared with adults decision-making rights.
Disadvantages of current law
The current legal position (and guidance documents that take the law into account) has two major disadvantages. First, in relation to competent minors whose refusals are overridden, the following gains associated with the experience of decision-making may be lost.
Such gains may be forfeited because of loss of trust in professionals or parents, feeling unheard and therefore abandoning participation, learned helplessness or protest at being treated unfairly. Thus, what is needed is a system that protects these potential benefits without introducing other disadvantages.
Second, some argue that there is no consistent basis for categorical distinctions between childrens and adults rights regarding consent, as individuals either have rights because they are rational agents (in which case the same tests of function should apply to adults and minors) or individuals have normative rights (in which case there are good reasons to respect children as well as adults) (Dickenson & Jones, 1996). This argument assumes that there are no relevant differences between children and adults.
Some might say it is obvious that there are differences between adults and children. If the relevant differences are of social, political or legal status, assessing minors competence is still important in order to ascertain what weight to give their preferred choices, but there should be no assumption that their competent refusals will prevail. If the relevant difference is in their developmental abilities, those minors who pass the tests of capacity applied to adults should have their decisions respected regardless of poor outcomes. If the relevant factor is that decisions entailing poor outcomes are to be overridden, then this should apply equally to adults and minors. I suggest that it is the lack of specific acknowledgement of the first relevant difference, that of status, that underlies the inconsistencies within the law and guidance on minors health care decision-making and consent. This difference in status does not permit consent to health care to be seen in isolation from other aspects of life, such as safety, basic needs and education.
One practical response
Decisions about whether or not to accept treatment should ideally be taken by children and their parents together. Rather than using the dichotomy of able to consent or not, children and parents should be consulted in relation to four different levels of decision-making: being informed, expressing a view, influencing decision-making and being the main decision-maker (Alderson & Montgomery, 1996). Within the current legal situation, I suggest that it is better to be honest with children about the scope and limits of their involvement at all four levels. It is more respectful of children to be honest and explain the decision-making process in a way that seeks to maximise their participation while minimising the chances of them losing faith with the process.
We should tell them that their participation is important, that their voice should be heard and their values and preferences taken into account. We must then make good these statements. We should explain that any decisions they make that might result in significant harm or death are likely to be overridden because parents and society value their survival to a fit and functioning adulthood, when they will take over responsibility for themselves. They need to understand that their preferred choices and values are important and may often, but not always, be decisive. This is because, while they are minors, their parents are legally responsible for their care and health care professionals are legally responsible for their health care. Their decisions may also be unacceptable if they undermine their parents ability to maintain their family, because in this society, it is considered that the family is the best organisation within which they can be raised.
Some may say that such an approach impairs childrens rights because it basically leaves ultimate power in the hands of parents and carers rather than children. However, given the existing legal framework, such a practical approach is more likely to maximise childrens participatory and consent-related rights in the interim, while the debate about the legitimate scope of childrens rights continues. Such debate must consider childrens rights to health care in line with their rights to choose in other aspects of their lives; essentially, we need to decide under which circumstances children can choose to leave the protection of their parents and the state.
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View this table: [in a new window] | MCQ answers |
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