The childIntroduction

Having first considered the statutory framework supporting families in the last one hundred years,1 the courts’ contribution to paediatric practice is now considered. The reported common law judgments are available for public scrutiny, each providing a unique detailed contextual insight into the (usually) anonymised clinical facts. There is no other opportunity for clinicians to review and reflect on real clinical data, which is otherwise invariably cloaked by privacy.

It may be argued that societal norms are at least to some extent mirrored in (and sometimes led by) judicial decisions. Furthermore, from time to time, Parliament reviews the common law, sometimes crystallising judicial decisions into statute.

Equally, medical regulation follows societal shifts in setting the standard of care. As the character of each generation changes, the General Medical Council adapts to common law developments.

Withholding treatment

In Re B (A minor) (Wardship: Medical Treatment) [1981] WLR 1421, a newborn had duodenal atresia and Down syndrome. Her parents had ‘…decided that it would be kinder to allow her to die rather than live as a handicapped person’ …and refused consent to duodenoduodenostomy. It was envisaged that any pain and suffering that B might experience while dying from gut obstruction would be assuaged by sedation. The local authority made B a ward of court, but the surgeon decided that the parent’s view should be respected. In evidence, the surgeon stated that ‘…I decided therefore to respect the wishes of the parents and not to perform the operation, a decision which would, I believe (after about 20 years in the medical profession) be taken by the great majority of surgeons faced with a similar situation’. The local authority sought an order authorising another surgeon to operate, but Ewbank J (a High Court Judge) found for the parents and refused the application.

The Authority appealed. In reversing the High Court’s decision, the Court of Appeal found that the relevant question was whether it was in B’s best interests to have the operation…not whether the parent’s wishes should be respected. No previous cases were referred to in either judgement; a strong indication (since the common law is founded on the rule of precedent) that no similar decisions in this area of law had until that point been handed down. The court was told that B’s life expectancy, if surgery were provided, would be 20–30 years. The court’s reasoning based on the paramountcy of the child’s welfare would be echoed by the Law Commission, when drafting the legislation that crystallised as the Children Act 1989. The groundwork for ethical consideration of paediatric practice had long since been established, originally relating to ‘…peculiarly different ethical issues’ posed by research in children.2 Subsequently, ethical debate flourished in the ADC (eg, Bissenden and Davies et al 3 4).

Delivering children safely into adulthood

An American court, in Prince v Massachusetts [1944] 321 US 158, was required to decide whether the adult who had arranged for a 9-year-old girl to sell religious pamphlets to passers-by had violated State labour laws. In finding the violation proved, Rutledge J pronounced that ‘…Parents may be free to become martyrs themselves, but it does not follow they can make martyrs of their children.’

Put another way, in a different era and context; ‘…Parents are not entitled to insist upon treatment…which is not in their child’s best interests’, echoed in Thos Evans v AHCH & Alfie Evans [2018] EWCA Civ 805. The English Court has for many years taken the view that it has a responsibility to deliver children safely into adulthood. Fifty years ago, a stepfather sought the court’s authority to prevent the publication of a book containing passages about the sex life of the deceased father of his still-minor stepson In Re X (A Minor) (Wardship:Jurisdiction) [1975] Fam 47. Latey J, granting the injunction, noted that ‘The Crown has a duty to protect its subjects…this is and always has been especially so towards minors.’ By the turn of the century, the practicalities of preparation for discussing withdrawal or withholding of treatment (latterly acknowledged as of equal legal significance) from infants was being debated5 leading ultimately to the first edition of what was to become serial guidance6 for both clinicians and judges, providing parents with an opportunity to contribute their perspective on the withdrawal of treatment.7

The Crown’s duty to protect children was reaffirmed in a case concerning the competent refusal of a 15-year-old Jehovah’s Witness to accept blood transfusion Re X (A Child) [2021] EWHC 65 (Fam). Munby LJ, over-ruling X’s refusal, noted that the courts’ ‘…core duty as a judicial reasonable parent is to protect and support minors to survive to adulthood.’

The wishes of adolescents

Since a child’s health is a fundamental consideration in protecting their welfare, it is unsurprising that medical decision-making by courts has fashioned a model of the legal capability of children, the responsibilities of their parents and the limits of the State’s legitimate intervention. This has been felt in the sphere of education, where there has been a protracted stand-off between educational authorities over the imposition of fines on parents resulting from truancy and school refusal.8 But in clinical decision-making, State intervention has led to sharper conflict between adolescents and the court.

In Re R (A Minor) (Wardship:Medical treatment) [1992] Fam 11, a 15-year-old girl with increasingly disturbed behaviour was, during lucid phases (while she was ostensibly capable of making decisions), refusing sedation. The Local Authority sought judgement to provide antipsychotic treatment, irrespective of her consent. The Court of Appeal made it clear that it could override A’s capacitous refusal if that were in her best interests.

How have we arrived at the point where we can assert that a child is capable? As noted already, the FLRA 1969 assigned legal capacity to 16-year-olds generally, although it did not describe the way capacity was to be established for the individual. A 1988 survey of 101 sexually active teenage girls made no reference to their capability to consent.9 The sociology and epidemiology of the subject was presented, but no reference was made to consent for intercourse, or of the Gillick judgement 3 years previously, either in the text or references.

The capability of mature children

The MCA 2005 provided a presumption of capacity for the individual, and a two-part test of incapacity. If the person is unable to understand, retain, weigh and decide the relevant matter, does he also suffer a disease or disorder of his mind or his brain? If both these functional and diagnostic elements are present, then the patient lacks capacity and will benefit from the protections of the Act.

This was recently exemplified by the decision in Re C [2024] EWHC 3331 (Fam), in which a capacitous 17-year-old child’s refusal to take her insulin was overruled by the court, eschewing pleas from the child that they would risk death rather than submit to treatment that they abhorred.

Running in parallel, for younger teenagers, the court in Gillick v West Norfolk & Wisbech AHA [1985] 3 All ER 402 decided that irrespective of age, if a child is of sufficient maturity and intelligence to enable full understanding and make a decision, then she is competent to do so. The case related to whether a local authority could provide a child with contraceptive services without her parents’ consent. The court accepted this argument.

Latterly, it has become clear that there is a hard line drawn at 16. Children under 16 are dealt with based on Gillick competence, while at 16 and over, only the MCA 2005 notion of capacity may be considered. There is no age where Gillick competence and mental capacity (as defined by the statute) coexist.

In Re M (Medical Treatment: Consent) [1999] 2 FLR 1097, a 15-year-old did not want to have someone else’s heart; nor to take lifelong medications. She would ‘…rather die with 15 years of my own heart.’ The court did not hesitate to over-rule the refusal of this competent teenager for a cardiac transplant, following similar decisions to over-rule a competent or capacitous child’s refusal either to save life or prevent serious irreparable harm. But as time has moved on, such challenges in the field of transplantation may be less likely. Capable children who may benefit from transplantation but choose not to do so remind clinicians that even if a transplant is forced on her, there is little that anyone can do to prevent the child surreptitiously avoiding the necessary post operative immunosuppression, ultimately rejecting the graft. This was envisaged by the judge in Re M, but he balanced these risks against the certainty of her death without transplantation.

Her Doctor

In Re D (A Minor) (Wardship:Sterilisation) [1976] Fam 185, an educational psychologist sought to prevent sterilisation of an 11-year-old girl with Soto’s syndrome. The girl’s mother was concerned that D would fall pregnant; proposing sterilisation…a proposal endorsed by both paediatrician and a gynaecologist, who was willing to operate. The court found that this decision was not for the doctors alone; and that judicial intervention was required; finding that sterilisation was not in D’s interests. Rather than create general guidance in this area of law, the courts have chosen not to do so; rather, simply directing practitioners to refer all such cases to court.

In Re J (A Minor: Child in Care, Medical Treatment) [1993] Fam 15, Lord Donaldson, Master of the Rolls, made it clear that no court can dictate what treatment doctors should provide to a child. This reappears in countless judgments and is equally applicable to adult practice. However, courts will interfere with parental responsibility in some circumstances. A mother wishing to name her twins Preacher and Cyanide was prevented from so doing, the court finding that her choices were inconsistent with the children’s welfare Re C (Children) [2016] EWCA Civ 374.

The role of the court

Glass v UK [2004] ECHR 102 provides an authority that if there is a parental objection to proposed medical treatment for their child, the courts’ view must be obtained. The European Court’s judgement concerned a dispute between parent and doctors over whether urgent analgesia should be administered to a 12-year-old boy who the clinicians believed to be dying from lung disease. There had arguably been time to contact the court on the telephone before drug administration. However, balanced against this must be recognition of the likely outcome of a court’s view, given the words in Re A Children) (Conjoined Twins) [2001] Fam 147: that while ‘…very great respect (is paid by the court) to parent’s wishes…these are subordinate to welfare.’

Wyatt v Portsmouth Hospital NHST [2005] EWCA Civ 1181 concerned a 450 g premature baby with chronic respiratory and renal disease, with profound brain damage, blind, deaf, incapable of voluntary movement or response. During prolonged litigation, the ‘milestones’ for the judicial determination of cases relating to terminally ill children were established; including resolving the issue that the notion of ‘intolerability’ (of further existence) is not a touchstone of a child’s best interests…but is one of the factors to be considered during the judicial resolution of where the child’s interests lie.

Standards of care

In Donoghue v Stevenson [1932] AC 562, Ms Donoghue had poured ginger beer into her glass from an opaque bottle. Having emptied her glass, she refilled it with the residual beer from the bottle. Only after the refilling did she notice a decomposed snail in her glass and alleged personal injury and nervous shock. From the litigation that followed, ‘negligence’ was confirmed as a tort (a civil wrong; as opposed to a crime, a criminal wrong) in its own right. The various elements of the tort of negligence subsequently gradually evolved, reflected in today’s field of ‘clinical negligence’.

Assuming, of course, in situations when the dividing line between foetal and paediatric medicine is unclear, what is and what is not ‘paediatrics’ (‘the foetus had been nobody’s baby’) is now settled.10

John Hector Bolam, a voluntary patient admitted with depression, underwent electroconvulsive therapy (ECT) without either muscle relaxant or restraint. As a result of the subsequent convulsion, he suffered bilateral ‘stove in’ fractures, whereby his femoral heads were driven through their acetabular cups. Although he lost his case (Bolam v Friern Hosp Management Committee [1956] WLR 582), the resultant ‘Bolam’ test of the reasonable standard of care, which included a comparison with a body of competent doctors who might have adopted a different technique during ECT, was created. It permeates subsequent medical law and regulation. A ‘gloss’ on Bolam was provided by Bolitho v City & Hackney HS [1997] 4 All ER 771 AC, whereby in a case relating to the timing or necessity for intubation of a 2-year-old with croup, it was held that the court must ensure that evidence given in relation to the standard of care must be logical and defensible, able to survive forensic judicial scrutiny. In the same year, HHJ Wall, a senior judge, provided cogent advice on providing evidence, directed to paediatricians.11

In Sidaway v Board of Governors Bethlem [1985] AC 871, a patient was paralysed after neck surgery; the risk to her cervical spinal cord had not been disclosed. Three Law Lords found that the Bolam standard applied to the disclosure of risk prior to obtaining consent for treatment; but two disagreed, finding that the court should use a standard set on behalf of the ‘reasonable patient’. Ultimately, an Australian court (in a judgement frequently relied on in English law) found in Rogers v Whittaker [1992] 109 ALR 625 (Aust. HC) that when a particular patient attached significance to a rare risk, that risk should have been disclosed. Mrs Whittaker had asked the surgeon preoperatively whether contralateral blindness was a feasible result after uniocular surgery. He denied that possibility. But after successful unilateral surgery, Mrs Whittaker’s contralateral eye was blinded. This was due to the occurrence of rare but well-recognised sympathetic ophthalmia.

Some years later, it was evident that particularly in the realm of research, complexities of obtaining consent were unresolved.12 Eventually, the UK Supreme Court aligned itself in the Scottish case of Montgomery v Lanarkshire [2015] UKSC 11, finding that in any medical field, a doctor should disclose both everything that a reasonable person in the patient’s position would regard as material; and in addition, anything that the doctor knows, or ought to know, that the patient regards as significant, or as relevant to the proposed medical management. Five years later, the General Medical Council adjusted its advice, accordingly, emphasising the importance of dialogue.13

Confidentiality

Gillick is the starting point for whether the child in front of you can control her private information (ref). The context of ‘control’ can be complex. Latterly, in LA v M&F&G [2018] EWHC 3939 Fam, G, a capacitous young person subject to a care order, did not wish her mother to know that she had been treated in a gender identity clinic. The local authority wished to support G’s wishes and sought permission to avoid informing mother. The court left it to the local authority to decide whether there was a ‘reasonably practicable way’ to consult the mother, while maintaining the daughter’s confidentiality (which it acknowledged there was not). Such dilemmas are not exclusive to medical practice.

Summary

Over the past 100 years, the statutory and common law approach to paediatric practice has evolved to the point where the decision-maker for a child’s medical management may be the capable child; the parents; or in the face of serious disagreement, the courts. All these routes are well-trodden, including that of the doctor’s dilemma of where the interests of the child in front of you reside.14 Furthermore, since the facts of two cases are never identical, all such decisions must be taken on an individual basis, applying the welfare principle which had been articulated by 1925, and was conserved as the paramount consideration to decision-making with the Children Act 1989. Despite an increasing volume of cases reaching the higher courts, there have been few general criteria provided precisely to settle such questions as to whether in principle, a capacitous child may refuse blood transfusion or nourishment.15 However, the 1997 advent of College guidance on withholding lifesaving treatment, often adopted by the courts (and now undergoing revision), is an exception.