Children refusing treatment

An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing and medical staff rely on when caring for patients.

‘Competent minors’ (Gillick competent children under 16 and young people of 16 and 17 years of age, who are presumed to have capacity) successfully refuse treatment in the NHS countless times every day. They decline oral medications, ignore the advice of physiotherapists and refuse point blank to be anaesthetised for operations that could improve the quality of their lives.

In each circumstance, the clinicians and parents come to a decision as to how to deal with the refusal on the basis of pragmatism. There is often an alternative to treatment which may be acceptable: a different oral form of drug, a reduced frequency of treatments, or simply resignation on behalf of those caring for the person that since it is rarely feasible to force them to acquiesce, any compliance is better than none. In surgical terms, we often wait until the symptoms from the yet-to-be-operated hernia or in-growing toenail or recurrently-infected cyst get to the point of persuading the child or young person that the proffered treatment is less bad than the disease.

In reality, the vast majority of refusals by competent minors are dealt with in this way. The underlying truth is that adults are powerless in modern society to insist on compliance in these circumstances, and that the long-term consequence of temporarily obtaining compliance by force will be to disenfranchise the eventual adult from clinical care, perhaps resulting in serious enduring harm.

But having reflected that pragmatic reality, where do clinicians stand when the competent minor refuses life saving treatment? Perhaps unsurprisingly, the short answer is that the refusal of a competent minor, and if needs be that of their parents, can be overridden by a court if it is in their best interests so to do. It follows that the right of child and parent to refuse treatment is not absolute. The court is bound to have regard to the ascertainable wishes and feelings of the competent child or capacitous young person, and will not lightly override their refusal if the minor’s decision is sensible or the treatment invasive.

In the case of a 16 year old orphaned girl called W, who had been unsuccessfully fostered and then suffered further misfortunes, a local authority was seeking the court's agreement to admit her to a unit where she could be compulsorily fed. Her anorexia was threatening her life. W said that as she was 16, with a statutory right to consent to treatment, she also had the right to refuse it. Whilst the High Court found that she did have sufficient understanding to make an informed decision, it nevertheless held that this could be overridden, so her case was appealed.

In finding that W’s refusal could be overridden, the Court of Appeal revealed its approach to balancing the under 18’s autonomy against the risks involved in its observance: ‘Good parenting involves giving minors as much rope as they can handle without an unacceptable risk that they will hang themselves’. Put another way, ‘The first and paramount consideration (of the court) is the wellbeing, welfare or interests (of the minor) and I regard it as self-evident that this involves giving them the maximum degree of decision-making which is prudent. Prudence does not involve avoiding all risk, but it does involve avoiding risks which, if they eventuate, may have irreparable consequence or which are disproportionate to the benefits which would accrue from taking them’.

In practice, the court is unlikely to overrule a competent minor’s decision in the ordinary run of surgical/dental/medical treatment, despite its power to do so. Furthermore, courts have supported competent children who were in conflict with their parents, adopting and upholding the child’s views on serious treatment. In the case of P, a 15 year old competent girl of ‘strong personality and mature views’, the child’s wish to have an abortion was opposed by her Seventh Day Adventist parents; the court nonetheless directed that the abortion was lawful.

But when the risk of a competent minor’s death turns on his or her refusal of treatment, it is generally the duty of the court to preserve life and ensure as far as possible that the child reaches adulthood. For this reason, despite the ubiquitous pragmatic acceptance of refusals of routine treatment by this group of patients, competent minors have invariably had their refusals of compulsory feeding and blood transfusions overridden by English courts.

The judiciary’s view on refusal of solid organ transplant remains to be seen. Although 20 years ago a 15 year old's preliminary refusal of heart transplant was overridden in a case known as Re M, it appears that she later acquiesced. Jurists are acutely aware of the gravity and practicality of enforcing not simply the transplant, but the management of the implicit life-long immunosuppression. Just how will this be achieved, given the dissenter’s trenchant opposition? And then the consequences of starkly practical refusal: rejection of the precious grafted organ equates as a loss to a different person who would have willingly received it. The court must be reluctant to impose their powers in this most distant orbit of tolerable paternalism.

Robert Wheeler
Department of clinical law
April 2019