Fearful symmetry

The fate of Baby RB was sealed after his father changed his opinion on what he regarded as being in his son's best interests and agreed with the child's mother, the doctors treating him and the expert witnesses that treatment should be discontinued.

As a result, the court did not give judgment in the case. But, in Words of Endorsement, Mr Justice McFarlane suggested that, had the court had to step in, it would likely have delivered a particularly significant ruling that would have signalled the first occasion on which a British court had held that life support could be withdrawn from a child who is not suffering brain damage, against the wishes of a parent (see solicitorsjournal.com, 10 November 2009).

'Profoundly unwell'

RB was born on 10 October 2008, and from birth was 'profoundly unwell', not being able to breathe on his own. He was placed on a ventilator and treated in a special care baby unit. He was diagnosed as suffering from congenital myasthenic syndrome (CMS), an inherited muscular disorder caused by a genetic defect, which left him profoundly disabled. The condition prevented the effective transmission of messages from RB's brain to his muscles, rendering him virtually unable to control any bodily movements. This led to him having to be fed and hydrated by a tube and ventilated for the 13 months of his life.

Emphasising the devastating plight which fate had placed the parents of RB, McFarlane J said, in RB (A Child) Re [2009] EWHC B26 (Fam), '... all the hopes and dreams that they will have had for their expected baby will have been dashed and replaced with a life characterised by worry, stress, exhaustion, confusion and no doubt great sadness'.

Their commitment to their child effectively 'had put their own adult lives on hold'. The stress of it had cost them their relationship. There was no cure for the condition, nor no effective treatment.

There were only two 'stark' choices for RB's future, the judge said. First, in a planned way, he could be administered a large dose of sedative, and have his ventilation tube withdrawn, which would lead to his death (favoured by the treating clinicians and experts, and reluctantly by his mother). Alternatively, he could be discharged from hospital and placed on home ventilation after a tracheostomy (initially favoured by the father).

The unanimous evidence from all three experts in the delivery of respiratory care was that it was not in RB's best interests to contemplate life outside the paediatric ICU, and that 'undertaking a tracheostomy and connecting him to a portable ventilator, rather than being a panacea, would simply open up the potential for him to have to endure a further range of procedures and operations' and that that life was 'likely to be at best uncomfortable for him and, more probably, regularly painful for him'.

Due to the initial opposition of the father to the withdrawal decision, the hospital authority had sought a court order allowing RB to die with dignity.

Legality and ethics

Generally, parents are invested legally with the proxy power to consent to medical treatment on behalf of their non-Gillick competent children, but this power must be exercised reasonably in the best interests of their child. Parents and doctors will agree in the vast majority of cases what treatment is in the best interests of the child.

However, doctors are not bound to accept decisions of parents that are not in the best interests of the child. The General Medical Council in 'Withholding and withdrawing life-prolonging treatments: Good practice in decision-making' (2002) warns that doctors have a responsibility to make the care of their patients' their first concern; that they should not 'prolong the dying process and cause unnecessary distress to the patient' (arguably with RB) and that they should make an up-to-date assessment of the benefits and burdens of treatment/non-treatment (again, tragically, the burdens of continued ventilation of RB heavily outweighing any apparent benefits) and the risks.

Ultimately, if there is any significant disagreement about best interests, an application to the court for a ruling should be sought. The guidance adds that authorisation given by one person (here the mother) 'cannot be vetoed by a refusal from another person who also holds parental responsibility' (here the father).

Several previous decisions illustrate the general trend of the courts backing the assessment of the doctors, rather than the parents, as to what constitutes the child's best interests. In Baby OT, for instance (March 2009), the Court of Appeal upheld a High Court decision permitting doctors to switch off a brain-damaged nine-month-old child's ventilator despite parental opposition; and in Re C (a minor) (medical treatment) [1998] 1 FLR 384, the High Court sided with the doctors' decision to withdraw ventilation from a 16-month-old child suffering from spinal muscular atrophy.

However, by contrast, in An NHS Trust v B [2006] EWHC 507, the High Court backed the parents' decision to continue ventilating their 18-month-old conscious and sentient child suffering from spinal muscular atrophy. The key distinguishing feature of the three cases being the sensory awareness/assumed normal cognition and lack of any reliable evidence of any significant brain damage in the B case.

Mercifully, only 300 people suffer from CMS in Britain, but tragically Baby RB was one of them, with a functioning cortex in a body catastrophically not consistent with viable life. Thankfully, compassionate consensus and common sense finally won out here, rather than confrontation in the courts.