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Adolescent autonomy revisited: clinicians need clearer guidance
  1. Joe Brierley1,2,
  2. Victor Larcher2
  1. 1Critical Care Unit, Great Ormond Street Hospital for Children, London, UK
  2. 2Paediatric Bioethics Centre, Great Ormond Street Hospital for Children, London, UK
  1. Correspondence to Dr Joe Brierley, Critical Care Unit, Great Ormond Street Hospital for Children, London WC1N3JH, UK; joe.brierley{at}gosh.nhs.uk

Abstract

In 1996, Brazier and Bridge raised the question ‘is adolescent autonomy truly dead and buried’ following judicial decisions which had seemed to reverse the Gillick-inspired trend for greater child autonomy in healthcare. Subsequent decisions by the courts have reinforced the view that those below 18 years in England and Wales remain children with limited rights to refuse treatment compared with adults. This is at variance with the daily experience of those working with young people who increasingly seek to actively involve them in making freely informed decisions about their healthcare, in accordance with the principles enunciated in the UN Convention of the Rights of the Child and the UK Children Acts. We review the derivation of the law in England and Wales in this area, in the light of another recent family court judgement enforcing treatment on a ‘competent’ child without his or her consent and ask: ‘How can the Common Law and the ethical practice of those caring for young people have diverged so far?’ Either young people can decide whether to have a recommended treatment, or they cannot. Given Ian McEwan's book, the Children Act, has stimulated wider social debate in this area might this be an opportune moment to seek public policy resolution with regards to healthcare decision making by young people? We argue that events since the Gillick case have underlined the need for a comprehensive review of legal policy and practice in this area. While absolute autonomy and freedom of choice are arguably inconsistent with the protection rights that society has agreed are owed to children, healthcare practitioners need clarity over the circumstances in which society expects that autonomous choices of adolescents can be overridden.

  • Ethics
  • Minors/Parental Consent
  • Law
  • Autonomy
  • Children

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Background considerations

Over the past three decades, children (under 18 years of age) have increasingly been given the power to make decisions about their own lives. The United Nations Convention on the Rights of the Child (UNCRC) and1 the various Children Acts2 have granted them liberty rights and conferred on others the obligation to consult and involve children in matters that concern them. In medical treatment, children's ability to consent is assumed by law at 16 years,3 and can be applied to those under 16 years of age who can demonstrate their capacity to understand (fully) the nature and purpose of the proposed treatment and its consequences for themselves and their family. However, the legal and other rights of children to make autonomous free choices have to be set in an ethical and legal framework that seeks to protect them from harmful consequences of their actions and takes account of their welfare rights. A child's refusal of medical treatment considered to be in his/her best interests is likely to be challenged and his or her capacity to do so questioned. In contrast, any attempt to force treatment on a legally competent adult constitutes the tort of battery.4

A recent judgement in the UK has reiterated the limits the Courts place on competent children who have not reached their 18th birthday declining treatment deemed to be in their best interests.

Case overview

A National Health Service (NHS) Foundation Trust Hospital v P [2014] EWHC 1650 (Fam) involved a 17-year-old female with a personality disorder and history of self-harm, requiring treatment under s2 of the Mental Health Act 1983, who took an overdose of paracetamol. P refused consent to urgent treatment for paracetamol overdose to avoid significant risk of subsequent liver failure and death. An urgent psychiatric review concluded that she had capacity to make decisions about her medical care. The NHS Trust applied to Court for a declaration that (i) it was lawful to treat her for the overdose despite her refusal and that (ii) steps that could be considered a deprivation of her liberty, for example, restraint or sedation, were lawful, though there was no requirement that these interventions be given.

In reaching his judgement, J Baker considered (a) P's wishes and feelings (b) whether she lacked capacity as determined by s3 of the Mental Capacity Act 2005 and (c) given that P was Gillick competent whether it was in her best interests to override her refusal.

(a). P's wishes and feelings. The urgency of the situation did not permit J Baker to speak directly to P herself, though he did take account of her wishes and feelings.5

In defence of this position, J Baker did order that P could apply to be heard later that day; he did not order that the full 21 hours' treatment must be given, rather that it was lawful and in P's best interests to do so. Nevertheless, in a setting in which communication technology allows 24/7 contacts, the question as to whether it is reasonable or ethical to make decisions that profoundly affect a person with capacity without actually speaking to them directly surely needs further debate. This is especially the case when there may be some uncertainty over the time window for delivery of the antidote, the inevitability of the predicted consequences and the availability of treatments for acute liver failure. Such an approach would be in keeping with determination of best interests as delineated in the Children Act (1989)2 and would respect children's participation rights (UNCRC).1

(b) P's capacity for decision making. The case also raises the question as to the extent to which adolescents like P have the capacity to make decisions to refuse life-sustaining treatments (LSTs). In this case, P's refusal amounted to a request to withhold a life-sustaining antidote to paracetamol poisoning.

Contemporary neuroimaging studies have provided some indirect support for the view that adolescents may lack the capacity to make such far-reaching decisions. During adolescence, maturational changes take place in the areas of the brain responsible for pleasure seeking impulse control and analytical capacity necessary for complex decision making.6 ,7 This process continues throughout adolescence and is not complete until the late 20s, though those over 18 are presumed legally competent for complex decision making. Neuroimaging findings do not imply that adolescents or young adults are incapable of decision making or forward planning or lack the ability to process information and act upon it.8 Older children possess very similar competencies to adults in this latter respect.9 ,10 Although adolescents become more able to take account of the views of adults, they may ultimately reject them; this finds expression in a greater desire for autonomy over decisions, emotions and actions.11

In P's case, J Baker was not satisfied that P lacked capacity under section 3 of the Mental Capacity Act and would presumably been regarded as being Gillick competent and satisfying other Common law tests for decision-making capacity. Nevertheless, it was held that allowing P's refusal of treatment was not in her best interests and that the Court's duty under Article 2 of the European Convention in Human Rights (ECHR) to protect an individual whose life was at risk outweighed her rights under Article 8 under EHCR.

The legal basis of decision making for young people

The current ethical and legal basis for decisions about children is influenced by the principles set out in the UNCRC 1989. Thus, Article 3(1) states:In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.12

As signatories to the Convention UK authorities must act in the best interests of children and the near contemporary Children Act of 1989 and its sequelae endorse the welfare principle and its paramountcy in making decisions about children.2 ,13

This concept has been readily adapted into other areas affecting children's lives—including healthcare.14 ,15 Decision making in paediatrics is based on application of the ‘best interests’ principle,16 ,17 the welfare checklist element remains influential:

Welfare checklist of the Children Act

  • The ascertainable wishes and feelings of the young person concerned in the light of their age and understanding

  • Physical, emotional and educational needs

  • Likely effect of change of circumstances

  • Age, sex, cultural, religious and ethnic background

  • Harm or risk of harm

  • Capability of parents or others to meet the young person's needs.9

The practical impact of this legislation has been to grant children greater involvement in the decisions that affect them, especially as their maturity and understanding increase in parallel the parental right to make healthcare decisions declines, as set out in the Gillick judgementAs a matter of law, the parental right to determine whether or not the minor child below the age of 16 will have medical treatment terminates if and when the child achieves sufficient understanding and intelligence to understand fully what is proposed. Scarman LJ.18

The Gillick case was concerned with the specific question as to whether a child below 16 years of age could consent to receive contraceptive advice and treatment without the express knowledge and consent of a parent. It has subsequently been widely interpreted as providing authority for the competent adolescent's independent consent to all medical treatments. Subsequent cases have recognised an ongoing role for those having parental responsibility in decision making even when the child is Gillick-competent, provided they act in the child's best interests. When parents and professional disagree as to what interventions are in a child's best interests, the courts are the final arbiter and are respectful of parental wishes concerning children's medical treatment.

Post Gillick, it was a common professional assumption that a Gillick-competent child's refusal was as equally valid as his or her consent. This logical interpretation of Gillick was accepted in Re W.19 However, a distinction was drawn between the power of determination (veto) and that of consent, so that in essence those with parental responsibility—including Courts—had authority to override the refusal of a Gillick-competent child, if it was in his or her best interests to do so. In applications where adolescents’ refusal to consent to LSTs was involved, Courts have balanced the child's right to have his or her autonomous decisions respected against the inherent duty to preserve life. Thus, the UK Courts have overruled both Jehovah's Witness child and family refusal of blood transfusions for the child20–22 and an adolescent's refusal of heart transplantation,23 though M was held to lack capacity.

Consent and refusal

The law appears to draw a distinction between consent and refusal with respect of children's right to have decisions to forgo LSTs honoured. The reasons for this may be more complex than a simple analysis of best interests. Refusal of an offer of treatment represents rejection and may compromise the professional–patient relationship of mutual trust and respect. Refusal of treatment is more likely to be associated with adverse outcomes than consent (although treatment against a child's wishes may also produce later harms). Offers of treatment are or should be based on sound empirical evidence and professionals may regard refusals as irrational and consent as rational. Professionals evaluate treatments from a medical perspective, whereas patients base refusals on their personal values and experience, both of which have internal rationality.24 This makes it harder for professionals to accept any refusal of LSTs. But not all treatments offered to children have an empirical basis and the harms of non-evidence-based therapies are increasingly recognised.

Professional dilemmas

Over the last 30 years, there has been increasing recognition of the obligation to respect the autonomous free choices of all who are competent to make them. In adult medicine, sufficient importance is attached to the duty to respect the wishes of competent adults, even if they are held irrationally and run counter to an objective view of their welfare, that those choices will be honoured. Thus, an adult in P's circumstances could have a refusal of rescue treatment honoured even if the consequences were an unpleasant death from liver failure. But unlike adults, in whom competence is presumed, children have to demonstrate capacity and achieve higher levels of competency than those required for adults.25 However, appeals to principles of fairness, justice and respect for persons would lead to the conclusion that young person who is competent to make a choice, whether voluntary informed consent or refusal, should have their choice honoured.

In practice, overriding societal and welfare concerns are likely to run counter to this view and permit paternalistic interventions that would be regarded as unacceptable in adult practice. Indeed, it has been suggested that a minor's competence only enables authorisation of a decision that others determine to be in his/her best interests.26 Some credence for this view comes from post Gillick judgements, which have variously ruled that a young person can lack competence to make a decision even if they have capacity;20–22 that they have an underlying condition which means they lack capacity, such as anorexia nervosa;19 that an otherwise competent decision may be overridden by a person with legal authority if it is their best interests to do so.19–21 Apparent distinctions between competence and capacity, consent and refusal may be difficult for clinicians to comprehend in their daily practice.

Harris, in discussing consent and end-of-life decisions, was uncompromising in his view that a competent child was entitled to make his or her own decision irrespective of any welfare or best interests considerations:The idea that a child (or anyone) might competently consent to a treatment but not be competent to refuse it is palpable nonsense, the reasons for which are revealed by moment's reflection on what a competent consent involves.27

Conclusions

So has the high water mark in adolescent autonomy been reached with P and the post Gillick cases and is the concept really dead? Should it really be the case that competent children cannot refuse treatments regarded as desirable or that are considered necessary to preserve life or prevent significant harm? In contrast to P, the informed, competent, supported (by parents) refusal of heart transplantation by a 13-year-old girl was honoured without Court action,28 though she later reversed her decision. Children, often with parents as partners rather than deciders, have an increasing role in wide range of decisions in healthcare, for example, design and implementation of research projects.29 The right of children to make competent informed refusal of LST with parental support has been formally acknowledged in a recent Royal College of Paediatrics and Child health document.30 Nonetheless, residual ambiguities in this area need to be addressed so that a reasonable balance between respect for autonomy and protection of welfare is achieved.

Some commentators have suggested that the law with respect to competence and capacity in children is difficult to interpret,31 confusing and seemingly at variance with the principle of respect for autonomy and with respect for the liberty rights of children who are able to claim them.26 Brazier and Bridge argue that apparent conflicts between adolescent autonomy and welfare interests can be resolved if the law grasps the full implications of autonomous decision making.25 They argue that misunderstanding of what constitutes maximally autonomous choice has led judges to reject apparently autonomous choices, which in fact were not. But the problem remains as to whether society can endorse an autonomous decision (eg, to refuse LST), whose outcome most in the community would reject. Thus, tensions between the duties to protect children and to respect and enhance their developing autonomy remain. However, to impose a purportedly functional test for capacity on adolescents that is in fact outcome based is both deceptive and inconsistent with adult practice. Cave has proposed a legislative approach that might incorporate minors within the Mental Capacity Act in conjunction with a new common law test for child incapacity, based on contemporary empirical evidence of children's abilities.26 However, all commentators acknowledge that there are circumstances in which the autonomous choice of an adolescent should be overridden, and that difficulties remain in defining when this should be.

The apparent divergence between the articulation of the common law and the daily experience of those providing healthcare to young people is troubling. Given that the subject matter of Ian McEwan's the Children Act,32 comprises the legal and ethical dilemmas involved in a fictionalised version of the Jehovah's Witness cases discussed above, might it not be time for an extensive public policy discussion to resolve this issue?

It is almost 30 years since the Gillick judgement and events since have only served to underline the need for a comprehensive review. It may be that absolute autonomy and freedom of choice are inconsistent with the protection rights that society has agreed are owed to children. As healthcare practitioners, we do need clarity over the circumstances in which society expects that autonomous choices of adolescents can be overridden.

References

Footnotes

  • Contributors Both authors contributed to the concept, JB wrote the majority of the article, VL edited and refined.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.