Minors and refusal of medical treatment: a critique of the law regarding the current lack of meaningful consent with regards to minors and recommendations for future change

Background

The issues surrounding the legal rights of minors to consent to and refuse treatment have long been contentious. In English law, it is accepted that adults have the right to bodily integrity. The law of battery, which prohibits any unwanted touching, protects this right. However, the acquisition of consent justifies most intrusions that would otherwise be seen as battery. Competent adults enjoy the legal right to supply and withhold consent to such interventions. In the medical context this has been referred to as an ‘absolute right to choose whether to consent to medical treatment, to refuse it or to choose one rather than another of the treatments being offered.’ ¹

Since the House of Lords ruling in the case of Gillick v West Norfolk and Wisbech Area Health Authority, mature and intelligent minors have the right to authorize their own medical treatment. ² However, subsequent cases have revealed that they enjoy no corresponding right to refuse treatment. Until a minor reaches the age of majority he can be forced to submit to treatment solely on the authority of his parents or indeed the courts, with the intention of protecting his welfare. Therefore, a minor can only agree with those ‘who know best’ – if the outcome of their refusal is deemed to be undesirable by those with parental responsibility, the child's views can be legally disregarded and the intervention can be performed with the medical professional involved safe from litigation.

The aim of this paper is to show that the separation of the right to give consent to treatment and the right to refuse treatment for those aged under 18, regardless of capacity, is neither justifiable nor coherent. In order to do this, the key cases that have led to the evolution of the law in this area will be discussed and analysed. A logical and practical alternative to the current quagmire of case law will then be proposed in order to allow a functional assessment of a child's capacity to make medical decisions rather than purely outcome-based ones – namely that the criteria already outlined in the Mental Capacity Act 2005, which are used to determine whether an adult enjoys sufficient capacity to consent to or refuse medical treatment, is extended to minors. However, an important caveat will be added to this proposal in order to reflect the range of maturity displayed by children under 18 and to protect those without sufficient competence from making complex decisions with potentially catastrophic and irrevocable consequences. Those under 18 would have to prove themselves to have the capacity to make decisions pertaining to their health care rather than, as is the case with adults, it being assumed unless shown otherwise. Thus, while the threshold for refusing essential medical treatment that is deemed by the medical profession and those with parental responsibility to be in the child's best interests would be set high, it would be achievable.

The Family Law Reform Act 1969

The Family Law Reform Act 1969 reduced the age of majority from 21 to 18. Furthermore, section 8 of the Act empowered 16–18-year olds to give effective consent to their own medical and dental treatment. However, parents retained the power to provide proxy consent on behalf of their child until the age of 18, if that child lacked capacity to make such a decision. Interestingly, in subsection 8(3) of the Act it states:

Nothing in this section shall be construed as making ineffective any consent which would have been effective if this section had not been enacted.

This was widely interpreted by the medical and legal professionals maintaining the status quo, whereby a doctor enjoyed a degree of discretionary judgement. While it was now accepted that by 16 the majority of children had become sufficiently mature and intelligent to consent to medical treatment independently of their parents, doctors were free to evaluate younger children's ability to give valid consent without parental involvement. This interpretation was challenged in the case of Gillick v West Norfolk and Wisbech Area Health Authority. ²

The Gillick judgement

In 1974, the Department of Health and Social Services (DHSS) issued guidelines regarding the provision of contraceptive advice and treatment to girls under 16 years of age. In effect, the DHSS placed the responsibility of deciding whether or not it was suitable to offer these services to individual girls under 16 directly on the doctor involved. If the doctor decided it was appropriate and in the girl's best interests to do so, he could proceed without the need to contact the girl's parents.

This was challenged by Mrs Gillick, who sought, and was denied, a guarantee from her local health authority that none of her five daughters would be provided with contraception or abortion services without her sanction until they reached 16. This case eventually reached the House of Lords and the Law Lords found against Mrs Gillick by a majority of three to two. While this case focused on the specific issue of the provision of contraceptive services to girls aged under 16, it was necessary for their Lordships to first consider the validity of consent to treatment by minors in more general terms. On this subject, they agreed that it was unjust that a mature minor should have no say over personal medical matters solely because of their age.

Provided the patient, whether a boy or a girl, is capable of understanding what is proposed, and of expressing his or her wishes, I see no good reason for holding that he or she lacks the capacity to express them validly and effectively and to authorise the medical man to make the examination or give the treatment which he advises. ³

It was consequently established that once a child under 16 had the necessary maturity and capability to understand the nature of a suggested action, she was entitled to give valid consent to medical examination or treatment without parental permission.

Defining Gillick competence

A significant limitation of the Gillick judgements is the lack of clarity regarding exactly what is required to be deemed Gillick competent. Rigorous conditions were stipulated for the evaluation of girls under 16 who request contraception, but the test of Gillick competency with regard to consenting for more general medical treatment rests on the vague ideals of ‘sufficient understanding and intelligence’.

In some senses a certain amount of flexibility is appropriate for the designation of adolescent competence and perhaps it allows the courts to demand a degree of understanding and reasoning from a minor proportionate to the gravity of the decision they have to make. Adults are under the same obligation, as noted by Butler-Sloss P when considering the competence of a needle-phobic pregnant woman who was refusing a Caesarean section.

The graver the consequences of a decision, the commensurately greater the level of competence is required to take that decision. ⁴

A flexible, case-by-case approach therefore seems consistent when applied to the context of consent by children. Thus, the more serious the potential result of a decision, the more intelligent and mature a child must be to make it. For example, a young child may be perfectly capable of providing consent to have his ears examined, but he would not have sufficient knowledge and the level of reasoning required to consent to cardiac surgery. On the other hand, a 15-year-old living with chronic renal failure for years may be capable of deciding that a renal transplant, even with its inherent risks, is preferable to a lifetime of dialysis. It has been noted that this sense of developing autonomy emulates the normal process of growing up and becoming more independent of one's parents. ⁵ A decision-specific, person-specific conception of what it is to be sufficiently mature and intelligent to make a given decision thus seems reasonable and defensible.

It is the author's opinion that to be considered legitimate, the test of Gillick competency must clearly be a functional assessment and not dependent on whether those with parental responsibility agree with the outcome. This is not a new argument and the idea of a functional-based test of adolescent autonomy has already been espoused by eminent legal commentators, such as Brazier and Bridge. ⁶ Gillick was concerned primarily with the entitlement of minors aged under 16 to provide effective consent to medical treatment without parental involvement. It did not require the Law Lords to specifically address a minor's right to refuse treatment. However, it was logically assumed that the right to give consent encompassed a corresponding right to refuse consent. ⁷ This assumption was backed by an edict by Lord Scarman:

…I would hold as a matter of law the parental right to determine whether or not their minor child below the age of 16 will have medical treatment terminates if and when the child achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed. ⁸

The meaning of this statement seems clear – as soon as a child becomes Gillick competent, their parents lose the right to either veto treatment that a child has already consented to or to provide proxy consent on behalf of an unwilling child. However, even if the parent's rights did continue in some diminished capacity, it was understood that the House of Lords had concluded that, in cases of conflict, the views of the Gillick competent minor must take precedence over those of their parents. ⁹ This is a powerful endorsement of adolescent autonomy and indeed is in keeping with the idea of a functional approach to autonomy. As the child develops understanding and reasoning, so the parents have less influence over the child's decisions. However, subsequent cases, discussed below, have since overturned this interpretation in favour of a more paternalistic approach.

Re R and Re W: curtailment of adolescent autonomy

Re R concerned a teenage girl aged 15 who suffered from acute psychiatric problems. ¹⁰ Her mental state varied but even when apparently lucid she refused to consent to the administration of antipsychotic medication. It was clear that she lacked insight into her condition. She was under the care of her local authority after assaulting both her parents. The local authority was reluctant to administer medication against her will and so sought judicial authority. The Court of Appeal found, contrary to a psychiatrist's report, that R lacked Gillick competency. They ruled that the Gillick test required consistency. That it was not ‘apt to a situation where the understanding and capacity of the child varies from day to day according to her illness’. ¹¹

The judges also found unanimously that when exercising its wardship jurisdiction, the court could override both minors’ and their parents' refusal of treatment. This means in effect that the will of the court potentially supersedes the power of parents to decide for their child. Lord Donaldson went further still and made obiter observations regarding parental rights to provide proxy consent for their children. He reinterpreted Lord Scarman's words and drew a distinction between the Gillick competent child's absolute right to consent to treatment without parental involvement and their lack of entitlement to refuse to submit to treatment sanctioned on their behalf.

I do not understand Lord Scarman to be saying that, if a child was ‘Gillick competent’ … the parents ceased to have an independent right of consent as contrasted with ceasing to have a right of determination i.e. a veto. ¹²

Thus, when a child achieves Gillick competence and wishes to consent to treatment, his parents can no longer veto that treatment. However, if the same child chooses to refuse treatment, his parents still retain an independent power to provide consent on their unwilling child's behalf.

To illustrate his point further, Lord Donaldson infamously likened consent as being like a key that opened the locked door which protected children from unwarranted interventions. Once a child becomes sufficiently intelligent and mature, she as well as her parents and the courts, if necessary, become keyholders. Any one of the keyholders is able to give effective consent independently of the others, and once the door is unlocked the doctor is able to proceed without the fear of litigation. This ill-thought-out metaphor, which ignores the fact that keys are able to lock as well as unlock, was revised by Lord Donaldson in a subsequent case discussed below.

In Re W, a case concerning a 16-year-old anorexic girl, this inability to refuse treatment was extended to those aged 16–18 years. ¹³ W was an orphan under the care of her local authority. They wished to ascertain whether, if W's condition worsened, they could lawfully feed her via a nasogastric tube without her consent. As a 16-year old, W did not have to prove herself Gillick competent to consent to treatment. She was assumed to have capacity and empowered under section 8(1) of the Family Law Reform Act 1969 to provide effective consent to medical treatment unless it could be shown that she was not competent. In this case, due to her anorexia nervosa, W was deemed not to have the capacity to make treatment choices. It therefore seems reasonable that those with parental responsibility for W are able to make decisions that are in her best interests to protect her wellbeing. However, Lord Donaldson again went further and extended his judgement to include all minors under 18. He did not feel, in contrast to the established interpretation, that section 8(1) of the Family Law Reform Act conferred absolute autonomy regarding medical decisions onto those over 16. Instead, he believed that those with parental responsibilities retained independent powers of consent until a child reached 18. He also used the opportunity to indulge in the construction of another metaphor. He now declared that he preferred to liken consent to a ‘legal “flak jacket” which protects from claims by the litigious’. Thus, as with Re R, the minor would not be the sole provider of this legal protection. The health-care professional could also obtain it from a parent or the courts. This interpretation of the purpose of consent, namely to protect the doctor from the courts, was rightly criticized as reducing the notion of patient autonomy to the realms of fiction. ¹⁴ Of course, doctors must ensure that they have been given consent before they proceed, but the language of Lord Donaldson implies that they may grab it where they can and proceed to do as they wish, protected from the bullets of the law.

While this paper supports the outcomes of these verdicts, the reasoning in these cases raises the important question: ‘Should a teenager under 18 ever be able to refuse medical treatment?’

Implications of Re R and Re W: no right to refuse treatment

In the author's opinion the reasoning involved in reaching verdicts in the cases of R and W should have been simple. Both minors failed their respective tests of capacity and so were shown to be unable to make a rational choice about their own health care. In the majority of such cases, when a minor lacks capacity due to illness or lack of understanding, those with a parental duty are best placed to evaluate the child's best interests. Therefore, in those instances, those with parental responsibility should be empowered to make decisions to protect their child's welfare.

It does not, however, seem logical that the courts should use these cases to decide that in no circumstance does a minor have the power to veto treatment – that her parents and the courts retain an independent power to consent to treatment until she turns 18. It has been noted that consent to medical treatment ‘necessarily involves the giving of consent and the withholding of consent. Without one the other has no meaning’. ⁷ This illogical stance has also been criticized by Brazier and Bridge: ¹⁵ ‘the law should not pretend to apply a “functional” test of autonomy to every patient when younger patients are in fact subjected to an “outcome” test’. It is duly noted that all three judges in the case of Re W emphasized that the objections of a minor must be taken into consideration and there should be ‘strong predilection to give effect to the child's wishes’. Despite this, it seems clear that the courts will always rule that a mature child's right to refuse an invasion of their bodily integrity is secondary to the preservation of their welfare. This separation of the right to consent to treatment and the right to refuse treatment for adolescents who are over 16 or Gillick competent is at odds with the absolute right to self-determination that adults enjoy. This paternalistic approach is supported by some commentators who believe that all young people are immature and lack the life experience necessary to accurately reflect upon the formative influences that may influence their decision-making capability. ¹⁶ This approach manifestly contradicts Lord Scarman's concept of evolving autonomy as set out in Gillick. It does not seem coherent that chronological age itself should be a barrier to decision-making, however serious the consequences may be. In the author's clinical experience a young teenager who has lived and dealt with a chronic illness for many years is better placed to evaluate whether or not treatment is in their best interests, than a 21-year-old suddenly faced with an emergency situation.

It is apparent that refusal of treatment may have more serious consequences than consenting to a recommended course of action. It involves rejecting professional medical advice given in the patient's best interests. Nonetheless, Harris’ view that it does not follow that the process by which a patient reaches a decision to refuse treatment differs from the decision to accept it, is supported:

The idea that a child (or anyone) might competently consent to a treatment but not be competent to refuse it is palpable nonsense … [T]o understand a proposed treatment well enough to consent to it is to understand the consequences of a refusal. And if the consequences of a refusal are understood well enough to consent to the alternatives then the refusal must also be competent. ¹⁷

Therefore, it is argued that once a minor has reached a certain level of intellect and maturity that their right to self-sovereignty over their own body outweighs any parental rights, regardless of well-meaning intentions, to force a child to submit to unwanted treatment.

The impact of religious beliefs on Gillick competence

Another pertinent case that was decided before the Court of Appeal verdicts of Re R and Re W, which again highlights the difficulties in defining Gillick competence and the court's reluctance to allow a minor to suffer harm by refusing treatment, was that of Re E. ¹⁸

E was a 15-year-old boy who, like his parents, was a Jehovah's Witness. He developed life-threatening leukaemia. With parental sanction, he refused the blood products that were an integral part of his treatment plan. He was subsequently made a ward of the court. The judge conceded that E was highly intelligent, mature and knowledgeable about his leukaemia and the implications of his refusal of treatment. He did question E's ability to make a voluntary decision when bound by ‘the very powerful expressions of faith to which all members of the creed adhere’. It is indisputable that as E's parents also did not wish their son to receive blood, despite the risk to his life, it must have been difficult for E ever to accept this treatment. However, the judge decided that this pressure did not amount to an undue influence. Instead it was ruled that E was not Gillick competent because

I find that he has no realisation of the full implications which lie before him as to the process of dying. He may have some concept of the fact that he will die, but as to the manner of his death and to the extent of his and his family's suffering I find he has not the ability to turn his mind to it nor the will to do so. ¹⁹

This threshold of what it is to be competent seems absurdly high. Surely there are many adults who are not capable of what is being asked of E? It has been suggested that the threshold of competence can and has been manipulated by adults to prevent minors making autonomous choices about their medical treatment. ²⁰ It is the writer's view that this is unjust: why should chronological age be made to have such an absolute bearing on a minor's perceived ability to make well-reasoned decisions? Perhaps it can be argued that E's religious beliefs prevented him from making a rational decision. However, religious beliefs are by their very nature not rational. They require faith and it can be argued that, for both adults and children, this faith requires degrees of self-deception and faulty reasoning. Nevertheless, competent adults may refuse treatment ‘notwithstanding that the reasons for making the choice are rational, or irrational, unknown or even non-existent’. ²¹ The author is of the opinion that if a minor can demonstrate the same degree of capacity required of an adult and is well-informed and acting voluntarily, then their religious beliefs should be accorded the same weight of those of an adult. Hence, in the case of Re E, it is suggested that this intelligent, mature minor, who was knowledgeable about his condition and not felt to be under undue influence from his parents, should have been allowed to refuse treatment. Indeed, when he turned 18 he did just that and died believing that he had participated in an ungodly act.

The way forward?

Despite concerns regarding the judgements following Gillick, it is not being proposed that all minors should be given the automatic right to refuse treatment. What is rejected is the notion that no one under 18 has the requisite level of understanding to be the sole determiner of their medical care. In cases in which the potential consequences are grave, full competence to legally refuse treatment should not be conferred lightly, but it should be achievable. It is argued that the notion of what it is to be competent for those under 18 should not rest on whether or not they agree with the doctor, i.e. the outcome of their decision, but instead how they came to make that choice, that is the reasoning and rationale behind it.

The logical remedy to this situation would be to extend the Mental Capacity Act 2005 to cover those under 16, thus replacing the Gillick test. According to the Mental Capacity Act 2005, an individual has the capacity to make a specific decision if he is able:

To understand the information relevant to the decision;

However, there would need to be some additional safeguards to those enjoyed by adults, namely the reversal of the burden of proof. Under the Mental Capacity Act, as it applies to adults, ‘A person must be assumed to have capacity unless it is established that he lacks capacity’. ²³ It is suggested that when the Act is applied to minors, a young person should not be assumed to have capacity unless she can demonstrate it. Manifestly, the degree of competence required would be directly proportional to the seriousness of the decision to be made. This is the case already for adults under the Mental Capacity Act – capacity is decision specific. This requirement should ensure that, when it comes to questions of life-saving treatment, only those teenagers who clearly have adult capacity surmount this burden of attestation. In addition, with regard to fluctuating capacity, children should be treated cautiously. A higher consistency of the powers of reasoning and understanding should be asked of a minor than an adult.

This would have a very practical impact in the first instance. These stipulations and the subsequent application of them are well known to all doctors working in the UK. Decisions about the capacity of adult patients to consent to various medication regimens and procedures are taken by the majority of doctors on a daily basis. This is not always a conscious process with a doctor running through the checklist supplied by the Act – either in her head or indeed in writing – as of course for adult patients it is assumed that they have capacity under the Act. Nonetheless, if there is any doubt about the patient's capacity then these are the conditions referred to. As it stands, the situation with regard to minors and consent is much more complex and only those doctors who specialize in the treatment of children can be reliably supposed to be fully aware of the intricacies of the law. However, not all doctors who treat children are specialist paediatricians. General practitioners, ENT (ear, nose and throat) surgeons and accident and emergency doctors, to name a few, see children regularly and often propose courses of treatment that need consent to be enacted. The author proposes that this more cohesive and streamlined approach to the law in this area would make more sense to them and would thus be applied more reliably in the many cases when it does not go so far as to reach the courts.

While it could be argued that this does not really change the current situation from a legal perspective, it is proposed that it would have three advantages. Firstly, the criterion laid out in section 1 of the Mental Capacity Act is less ambiguous than that specified by Gillick and thus would have a more consistent application in those cases that do reach the courts. Secondly, it would remind the judiciary that the assessment of capacity, for minors as well as adults, is a functional rather than outcome-based test. Thirdly, it would emphasize that, although the onus of proof may be different, the threshold of capacity is the same for minors and adults. This would strengthen the notion that some minors are capable of being deemed as competent as adults. In practice, most of the outcomes in the cases that reach the courts would remain the same. With perhaps the exception of Re E, there is more than sufficient rationale in the facts of the individual cases to rule that children are not competent to refuse treatment offered in their best interests. However, in a small minority of cases when there is conflict between a competent minor and those with parental responsibility, we need to return to the situation envisaged in the Gillick ruling, where the competent child's wishes are given precedence. Therefore, the author proposes that a stringent but not insurmountable functional test for adolescent competence would enhance adolescent autonomy, while still ensuring that in cases of doubt, life would be preserved.

Conclusion

In conclusion, the Gillick ruling seemed to be a reasoned and realistic interpretation of the adolescent acquisition of capacity. This elucidation has subsequently been challenged by the Court of Appeal in favour of a ‘bright line’ approach where a teenager is assumed to suddenly gain capacity on their 18th birthday. It is appreciated that the courts are reluctant to allow children to refuse treatment that is felt to be in their best interests and the author concurs that the verdicts in the majority of the contentious cases have been correct.

In cases where a minor is not competent to make difficult medical decisions, it is agreed that those with parental responsibility should be able to override that child's refusal to prevent them from suffering harm. However, the idea that it should be legally impossible for an intellectually mature child to achieve the requisite level of competence to make her own medical decisions is not supported by this article. When the conditions laid out in the Mental Capacity Act are met, no one should retain an automatic right to independently consent on behalf of such a child just because they are under 18. This should hold true regardless of the consequences – a test of functional capacity not based on the ‘right’ outcome. It is therefore proposed that the Mental Capacity Act be extended to those younger than 16 with the additional safeguards outlined above. This reform would clarify and simplify a difficult area of the law for both the medical and legal professions. It would also underline judicial respect for adolescent autonomy while protecting the welfare of immature children.

Conflicts of interest: None.