The courts are often called upon to make difficult decisions about what is in the best interests of patients who cannot express their wishes for themselves. In a tragic case, the High Court recently ruled that it was not in the best interests of a young boy to continue to receive life-sustaining treatment.

The boy had been diagnosed with Leigh syndrome, a severe and progressive genetic disorder for which there is no recognised treatment. After suffering respiratory arrest, he required mechanical ventilation, other invasive procedures and intensive care. A few months later, his condition deteriorated further and it was confirmed that he had extensive and apparently irreversible brain damage. The clinicians and medical experts were agreed that life-sustaining treatment was causing him harm, without any appreciable benefit, and was not in his best interests. His parents, however, contended that he derived sufficient benefit from life-sustaining treatment to justify it being continued. The Court therefore had to decide which option was in his best interests.

The Court heard from a single joint expert (SJE) who had concluded that the boy was in a persistent vegetative state, with no realistic prospect of recovery. He was unable to perceive external stimuli or the presence of his family and had no awareness of his surroundings. While children in a persistent vegetative state are generally thought not to have sufficient brain function to perceive pain and suffering, the invasive treatment and intensive care required to keep him alive constituted a huge burden. A second SJE was of the view that there was no benefit to continuing treatment given the severity of the boy's brain injury and the apparent absence of enjoyment of any aspect of life. A consultant responsible for the boy's care considered that the burdens of ongoing treatment would include physiological harm such as lung damage, tracheal damage, a risk of pneumonia and a risk of skin breakdown.

The boy's mother pointed out that he had lived longer than expected, and said that she thought he was now relatively stable and should be allowed to live, given that he was not suffering. His father expressed similar sentiments. Both parents believed that he demonstrated some level of awareness, and said that he had shown signs of improvement. They also said that withdrawing treatment would go against their faith.

The Court noted that the diagnosis of Leigh syndrome was not in doubt, and accepted the expert evidence that the boy had suffered irreversible brain damage resulting in no cognitive awareness and from which there was no prospect of recovery. Very sadly, he was in the terminal phase of a fatal disease. In the Court's judgment, it could not be in his best interests to wait for the likely physiological burdens to manifest or become acute before consideration was given to ending treatment that was incapable of halting the progression of his illness. The Court came to the conclusion that it was not in his best interests for life-sustaining treatment to continue.