Statistics from Altmetric.com
A surgeon’s view
Children’s surgeons are rarely described as “champions” of children’s rights. That is not to say we are oblivious or indifferent to them. With some honourable exceptions, surgeons tend not to perform the vital task of ensuring that rights are kept in the forefront of the public conscience. In contrast to paediatricians, who are not infrequently labelled “champions”, our involvement is usually limited to the daily consequences of rights.
There are many fundamental obligations incorporated in surgical practice that could be said to flow from children’s rights. However, in practice, the reverse occurs. What came first was a genuine concern to address the panoply of issues around hospitalisation and treatment, and to deliver the optimal outcome for the child and their family. Many would see the development of the subspecialty of paediatric surgery as a manifestation of this. Realisation of the need for, among other things, an appropriate environment, symptom control, and a coherent consent process has coincided with recognition of the obligations we have towards paediatric patients.
The advent of the patient and public involvement pillar of clinical governance is articulated as “Children’s Voices”.1 This may be seen as the further evolution of the rights of children, or a cynical ploy for votes, depending on your views.
In any event, this progress towards optimising the outcome for the child has all been the result of clinicians striving for improvement.
Whether it will fit neatly into the rights based vocabulary remains to be seen. To what extent does this progress in surgical practice correspond to any recognisable system of rights, and are these moral, or ethical, or legal rights?
Although the United Nations Convention on Children’s Rights (1989) cannot be directly applied in UK courts, we are under an obligation to honour it. As a codified objective standard, it provides for comparison with our current performance.
The main thrust behind establishing paediatric surgery as a specialty was to ensure that only doctors who had been specifically trained, treated children. This principle had already been firmly established in paediatric medicine and nursing, and anaesthesia was soon to follow suit. It remains to be seen whether further subspecialisation will perpetuate this trend. The surgical management of rare structural anomalies, for example, biliary atresia is being concentrated in a reducing number of centres. It is argued that this may enhance outcome but certainly will reduce access (in a geographical sense) to health care. Subspecialisation into system specific groups, such as paediatric urology, may reverse the trend towards pure paediatric care. Paediatric urologists are already rejoining their adult colleagues professionally, and may yet offer their services from within urology, rather than child health.
The Convention2 provides for children’s health services to conform to standards set by competent authorities, adding validity to our own efforts to specialise as children’s doctors. At the same time, if the trend to reconfigure services on an organ-system basis were seen to compromise the paediatric element of care, it would be inconsistent with this section.
In UK society, the most profound considerations of the Convention seem secure. All children’s doctors would endorse the right to life, and the need to maximise survival and development.3
As with our own legislation, and in concordance with the efforts in paediatric surgery to optimise the outcome of the child’s surgical management, “the best interests of the child shall be the primary consideration”.4 That is not to say that best interests always corresponds with optimal surgical management. A neonate with Hirschsprung’s disease may ideally be managed in hospital while awaiting the definitive surgery. There may be significant benefits in the reliability of colonic washouts and the early recognition of enterocolitis. However, the best interests of the child, in terms of the benefits of maternal bonding and being absorbed within the family dynamic, may outweigh the benefits of prolonged hospitalisation. The “health rights” of the child must be balanced against the rights of the child to benefit from family life.
If children have to remain in hospital, the Convention also reminds us that accommodation must be provided so that the parents can accompany them, to prevent separation.5
Considering that pain relief is as favoured by adults as it is by children, it is remarkable that analgesia following neonatal surgery is a relatively novel concept. During the late 1980s, there was still debate among some clinicians concerning the necessity for postoperative pain relief in neonates, and various groups took on the mantle of “advocates for the child” to ensure that it was provided.
Improvements in the understanding of neonatal physiology, rather than acceptance of the rights agenda, led to the diligent management of postoperative pain in all ages of children that should be the standard today. Our continuing efforts to provide symptom relief find no direct support from the Convention, but are clearly consistent with other forms of rights legislation.6
The association of fear with treatment is not exclusively due to the possibility of pain. There is a widespread perception that fear is rooted in ignorance (although one wonders how that stands up to the evidence test). Paediatric surgical nurses deserve credit for striving to ameliorate such fears by supplying an enormous amount of information concerning surgical diseases, procedures, and postoperative outcomes. Such information goes way beyond the literature available merely for the disclosure for the purposes of consent.
Day case “clubs” are widely employed to familiarise children with the process of day surgery, and play therapy together with specifically designed toys introduces the bizarre world of postoperative tubes, stomas, and long term implants that might otherwise horrify a child and his parents.
The issue of disclosure during consent is also pertinent, for both children and their parents. The strict legal doctrine of informed consent has not been accepted into English law.7 However, we have an obligation to disclose anything which the reasonable patient (or parent) might wish to know in terms of the procedure itself, together with any alternatives, benefits, risks, and complications, so that the consenter can make an informed and balanced judgement as to whether they should proceed with surgery.
It is hoped that surgeons welcome this provision of information. It reflects the ascendancy of the principle of autonomy, as paternalism falls from favour. However, one is not infrequently faced with a parent or patient who explicitly declines such information. Perhaps they privately consider that possession of the information will do them more harm than good. They may be discouraged or made afraid by the disclosed information, and prefer to rely on the doctor to act in their best interests, while personally remaining in ignorance. This is a difficult situation to resolve. The autonomists may respect the patients right for self-determination, but at the same time be concerned that the patient is missing an opportunity to be informed, “ which must be in their best interests”. And so the arch autonomist becomes a paternalist. CHAI may well be worth watching from this point of view.
The importance of involving the child in decision making conforms explicitly with the Convention8 and to our common law, which ensures that children who are capable of forming views are given the opportunity to express them, and to influence decision making. Whether the reluctance of the courts to permit dissent of the child who otherwise is judged to have capacity will continue, remains to be seen.
It has become clearer who may consent for surgery in a child. Even surgeons knew that the adult consenter had to have parental responsibility. However, one suspects that many adults who accompany the child for day surgery may blithely consent for a step child or niece/nephew for whom they have no parental responsibility, and neither they nor the consenting doctor know any better. Natural fathers now obtaining parental responsibility simply by appearing on the birth certificate9 may reduce the number of these non-consents.
This potentially rather casual attitude to who is consenting on the behalf of a child would be directly contrary to the Convention.10 The significance of such a breach of rights is self-evident; the best interests of the child are most likely to be served by ensuring that the decision maker is also the person with parental responsibility. Research may soon quantify this issue, and if it proves to be significant, Trusts should be able to rectify this relatively easily.
The situation where children can give their sole consent is also becoming clearer. Although statute11 recognises the validity of the consent of 16 and 17 year olds, it is clear that the courts do not intend to allow such children to refuse surgery when the treatment will preserve life or health. Equally, Gillick12 competence can allow some younger children to consent for themselves, depending on the gravity of the procedure and their familiarity with the details surrounding it. Recognition of this competence necessitates the provision of appropriate patient information.
It therefore may be acceptable for a 13 year old leukaemic to provide consent for his third central venous catheter within 18 months, while in a newly diagnosed child of the same age, such consent could be invalid. Despite the theoretical applicability of the Gillick judgement to any sphere of decision making, it seems unlikely that a court would find any child competent to provide sole consent for surgical research.13
With these parameters in mind, it is hoped that surgeons are making more informed judgements about what to tell, and who to ask, when handling the consent process, and that rights based training is incorporated in the surgical curriculum.
Such skills become relevant when considering the potential conflicts of rights posed by such issues as the need for dual consent for religious circumcisions.14 This begs the question as to whether a single parent can be relied on to act as proxy for the child. Furthermore, it brings into sharp relief the issue of whether consent is being given in the best interests of the child, or of the community. This article is not the place to address the ethics of dual consent; merely to use it to illustrate that the surgeon has to consider the rights of the child in the context of the rights and codes of the society in which he or she is being raised.
Dual consent is also of interest because it implies that there may be two valid yet contrary views, both held by people entitled to give proxy consent. It follows that one view may be more in the best interests of the child than the other. The law has given those who hold parental responsibility equity of influence. Yet we have allowed a situation to develop where, with contrary parental views, the fate of the child will depend on the outcome of the dispute between the parents.
This amounts to “rights” that a parent has over the child. It is recognised that a right to raise children according to the parents’ religious preference was codified within the Children Act 1989. However, this falls short of legitimising excisional surgery. One purpose of the Act15 was to shift the emphasis from parental rights to responsibilities, and the “dual consent” approach is inconsistent with this shift.
The “white board” is another example of this conflict of rights that impinges on surgical practice. There have been recent concerns that the use of the white board on the hospital wards, where children’s full names and bed locations are written in public view, was undesirable. The concerns were based on important issues of data protection and child protection. However, these conflict with concerns for patient safety, for a variety of reasons, which include patient tracking and certainty of identification.
On the basis that the location and correct identification of patients is an integral part of patient care, it is arguably no different from any other aspects of medical treatment. The benefits to the patient must be balanced against the risks, to determine whether the intervention is in the patient’s best interests. The result has been a consent based process, allowing the parent and child to determine whether they should appear on the board or not.
I conclude that the recent development of children’s surgery within the UK is largely consistent with the spirit of the Convention, and by extension, with the respect for children’s rights. These examples serve to illustrate the balancing of conflicting rights that forms the daily work of paediatric surgeons; although it is unlikely that they generally consider the problems they face as explicitly rights based.
A surgeon’s view
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.