Goodness, sometimes a law report can be hard to read. Not because it involves legally or technically complex issues, but just because the subject matter of the case is so awful. I really did find it difficult to read Ms Justice Russell’s judgment in Re C (An Infant), and I don’t see how anyone can fail to be moved by it, particularly if they are a parent.
The case concerned a two month old infant who was sadly born with a number of extremely serious medical conditions, in particular a severe brain abnormality, which caused him to suffer almost continuous seizures. There is no available treatment for his underlying brain abnormality, and his life-expectancy is less than one year. He is having to be on ventilation to keep him alive. His death, as Ms Justice Russell explained, can be imminent, or it can be delayed.
To give an example of the suffering this poor child is enduring, we are told that several of the many seizures he suffers each day require him to be given ‘bag and mask ventilation’. This involves a mask being placed very tightly over his mouth and nose, at the same time as his jaw is pushed forward forcefully to allow for oxygen to be forced into him. Unsurprisingly, the procedure is both uncomfortable and painful.
In the circumstances the NHS Trust applied to the court for a declaration that it would be lawful and in the best interests of the child for him not to be treated with intubation or mechanical ventilation, not be to treated with any resuscitative measures, and that treatment be limited to palliative care, limiting therapeutic interventions to those that make him more comfortable and relieve his stress and pain. His parents, despite accepting that the child’s life expectancy is under one year, understandably wished to prolong his life and to continue with ventilation and CPR. They also wanted him to be given an alternative medication, to attempt to treat his epilepsy.
The application, as indicated, fell to Ms Justice Russell to determine. She very carefully considered both the benefits and the burdens for the child, in other words the quality of his life. She found that whilst he was loved by his parents and family, he was also a child who had continually and repeatedly suffered pain and distress because of his condition, and the medical intervention and treatment he had required. There was no evidence that would suggest a positive outcome in a trial of the medication his parents wanted him to be given, and continued use of bag and mask ventilation and CPR would only be delaying the inevitable, while subjecting the child to further pain and distress. The child’s death was inevitable, and nothing could be done to stop it or reverse or treat his underlying condition. In her judgment, he should be permitted to end his life in as comfortable, pain-free and comforted condition as it was possible to achieve.
“It is understandable that [the child’] parents, particularly his mother, want medical staff to persist with treatment and/or intervention [in] an attempt to extend [his] life but the court is objectively concerned with [his] best interests and I am aware that to continue to intervene, to bag and mask and to carry out CPR is against the advice and wishes of [his] treating physicians and his medical team for good reason and because they are aware that continued intervention and treatment will not address the cause of the frequent seizures suffered by [him]. This is a baby who has already suffered a great deal. I have endeavored to consider [his] situation from his perspective in as much as it is possible for any court to do so. The conclusion that I have reached is that it is in [his] best interests for the court to make the declarations sought by the NHS Trust because the intervention and invasive treatments which his parents seek confer no real benefit and subject [him] to continuous, and ultimately futile, pain, suffering and distress; it follows that it is lawful for the treatments to be withheld.”
To hardened observers the outcome of this case may seem pretty routine. After all, how often does a court not go along with the views of medical experts in such cases? However, I’m sure Ms Justice Russell would be the first to say that there is never anything ‘routine’ about cases like this. They all involve heart-wrenching decisions, not just for the children involved, but also for their families. I can only begin to imagine how difficult it must be to make those decisions.
You can read the full judgment in the case here.