• Data Collection
• Ethics
• Paediatrics

Clinical ethics committees (CECs) set out the lawful and ethical treatment options available to clinicians, dealing with a steady trickle of cases concerning the care of children in hospitals. It became apparent some years ago that many less contentious (elementary, but relevant) enquiries were not being aired in our CEC, perhaps because the enquirers perceived the questions to be of insufficient gravity. But such enquiries were oft repeated, such as: ‘Who can give consent for this child’s treatment?’

While in the absence of an answer (or an opinion) children were safely treated, the feeling nevertheless endured that their clinical management would be enhanced by the support of a clinical legal service, which was set up in 2009.1 The service was initially focused on children’s hospital care, but within three months encompassed adult practice within the hospital and the local community.

Here we report the enquiries concerning the legal aspects of clinical care of children, for the attention of their doctors. During these 13 years, 434 enquiries were made, among the total of 1349 enquiries derived from all age groups.2 The prospective collection of data began immediately with our department of clinical law taking enquiries from any member of a regulated clinical profession.

It is likely that a similar number of referrals, in proportion to the total patient population, would be encountered in any UK centre providing an equivalent service. Most enquiries originated locally, some from other UK centres and a few from abroad; the responses are based solely on English law. The local referrals included those from our CEC. In addition, there have been a few referrals from community, social and primary care. A series of around 100 short summaries of clinical legal dilemmas are available in the website library.3 The 12 500 or so annual visits may have prompted referrals from within the hospital and further afield.

In the paediatric group, we have identified 90 separate ‘phenotypes’, within seven broad categories, set out in box 1. Fifty-nine further phenotypes inapplicable to children were identified in the adult population. Since first publishing the data, we have encountered 16 more phenotypes, 3 that are applicable to children, including ‘interfering with inpatients’ mail’. The continuing accrual of phenotypes hints that our list of important issues is incomplete.

Comparison with the enquiries made relating to adult services was instructive. Of 42 enquiries relating to the duty of candour, only 5 came from paediatric clinicians. Either children’s doctors have little to be candid about … or perhaps we are simply better versed in our regulated duties. On the other hand, paediatric clinicians brought seven of the nine clinically ‘extraordinary’ enquiries to the service (box 1.6), giving an opportunity to illustrate the breadth and depth of clinical law in children’s practice; we provide a summary of the cases in this phenotype.

One related to an adolescent swimming at Paralympian level who had lost a foot but was seeking more proximal amputation. This would make her more competitive, reclassification of the disability acting in her favour. Another is the request for general anaesthesia for a haircut in a child with severe behavioural difficulties, and untreatable head lice. There was an enquiry as to whether a cardiac pacemaker could be turned off during withdrawal of care, profoundly disturbing from the perspective of the clinicians. Separately, a family requested that their 14-year-old schizophrenic daughter should be restrained for exorcism, to get rid her of the responsible demon. A mother to be, 34/40 weeks’ gestation, sought a near-immediate induction of premature labour to provide her dying 7-year old with the consolation of meeting his new sibling. A paediatric intensive care unit admission and sedation or general anaesthesia was proposed to facilitate feeding a competent 14-year-old with anorexia, who was steadfastly opposing treatment. Finally, an overseas enquirer sought advice as to whether separation of conjoined twins that would likely cause the death of at least one of the children was lawful in England. If nothing else, this collection of cases hints at the potential interaction of family, criminal, tort, mental health, regulatory and capacity law flowing from a clinical enquiry.

The other 89 phenotypes so far described may deceive in their simplicity … the parent who wished to administer intramuscular injections of unknown composition to her child herself posed, on reflection, a rather complex legal problem. But despite our encountering but a single case of this phenotype in 13 years, it is likely that several similar cases arise nationally each year … and cause similar consternation. We only dealt with one child whose criminal record led to unusual arrangements for her inpatient stay; one case where a family friend (regrettably) provided interpretation services diametrically counter to the child’s welfare, or one case of a clinician being defamed by her patient. Each of these cases lead to a clinical legal solution, but it would have been easier to refer to a previously drafted formula that would at least have provided us with a starting point. The benefit of promulgating skeleton guidance for each of the ‘rare’ phenotypes seems self-evident. This task taken on by paediatric groups in association with lawyers and ethicists (and others) across the nation would not be onerous.

Our data reveal that matters relating to parental responsibility/opposition to treatment, the welfare checklist, contested blood transfusion, competence/capacity/consent, records’ disclosure and standard of care comprise more than one-third of the children’s enquiries received. We fully expect this to be true in any acute hospital, within and beyond the UK. The fact that clinicians are making these enquiries hints at an awareness that their clinical dilemma is of legal significance but needs to be better articulated as a legal question. Since these fields of law are readily accessible, it would be straightforward to set out guidance for paediatricians.

Clinical law and ethics are no less fundamental academic disciplines than the other ‘basic sciences’ on which children’s medicine is founded. Radiology and therapeutics are indivisible from physics and chemistry … as surgery is inextricable from anatomy. Arguably, of equal value from the child’s perspective is to be treated ethically, according to the law. Yet this basic science has received less attention if the paediatricians’ enquiries to our clinical legal service are considered as a measure of their uncertainty in this discipline.

Clinical education is flourishing, with a greater understanding of adult learning theory and more recently the need to adopt new strategies; we are at a point in medical education where the world is our oyster. Stories4 offer an insight into new vistas and for millennia have been used to spread wisdom from human experience. While many of these modern techniques could be adopted to train doctors in clinical law and ethics, perhaps simply telling the stories of these phenotypes would be the best start to embedding an awareness of how they are relevant to all of us as children’s doctors; probably much more so than we realise.

We propose these data as a starting point for those who seek to provide paediatricians with a working knowledge of clinical law as it applies to children. We would welcome collaboration in creating a ‘library’ of guidance or promulgating ‘stories’.

Although familiar with curricula that include medical law, we are not aware of any other published evidence of what children’s clinicians want to know.