Guy’s and St. Thomas’ NHS Foundation Trust v J (a Minor) & Ors

In serious medical treatment decisions concerning a child, the court must determine whether the proposed treatment is in the child’s best interests. Treatment which is burdensome, distressing and offers no therapeutic benefit may properly be withheld, even where withdrawal or non-provision may lead to death.

A child’s wishes and feelings must be considered, but they do not equate to adult autonomy. A child’s apparent capacity or Gillick competence does not require the court to treat the child’s wishes as determinative in life-saving medical treatment decisions. Where treatment is not in the child’s best interests, it is lawful to withhold or withdraw it.

The Trust applied for declarations concerning the treatment of J, a 15-year-old child with advanced Pantothenate Kinase Associated Neurodegeneration and recurrent episodes of painful upper-airway dystonia. J was receiving repeated chin lifts and jaw thrusts to relieve airway obstruction.

The Trust sought declarations that these airway manoeuvres were not in J’s best interests because they were painful and burdensome, provided symptomatic relief only, and could not alter her progressive neurological condition. The application also arose in the context of a palliative care plan under which further intensive care, intubation and ventilation would not be provided. The central issue was whether continuing the airway manoeuvres was compatible with J’s best interests.

1. Application granted. The court concluded that providing the contemplated airway manoeuvres was incompatible with J’s best interests. The procedures were painful, distressing and burdensome, occurred repeatedly, and had no effect on the underlying untreatable neurodegenerative disorder.
2. The court did not need to resolve whether J’s distress arose principally from the airway obstruction or from the manoeuvres themselves. The two were inextricably linked. Stopping the manoeuvres would probably lead to critical airway compromise and death, but resulting pain and distress could be managed by sedative medication, even though that medication might itself fatally compromise respiration.
3. The court accepted the professional and independent palliative-care consensus that treatment should move from active or curative intervention towards alleviation of suffering and symptom management. This did not mean that all treatment would cease.
4. J’s wishes and feelings had to be considered. Her non-verbal status made definitive ascertainment difficult, but her observable reactions, including panic, alarm and terror, were significant evidence. A child is not autonomous in the same way as an adult. Even if a child is Gillick competent, the child’s views must be weighed in the balance rather than treated as determinative in serious or life-saving medical treatment decisions: In the matter of X (A Child) (No 2) [2021] EWHC 65 (Fam).
5. The relevant question was whether it was in J’s best interests to receive the treatment, not whether withholding or withdrawing it was independently in her best interests. Following Aintree University Hospitals NHS Foundation Trust v James [2013] EWCA Civ 65, if treatment is not in the patient’s best interests, it is lawful to withhold or withdraw it and unlawful to provide it.