Skip to content

Should parents decide? The case of RB

In the Family Court yesterday, a controversial case that has been widely reported in the media came to a premature close. The father of baby RB, a severely physically disabled 13 month-old infant, withdrew his opposition to the plan by RB’s mother and doctors to take him off life support. It is believed that in the near future doctors will stop breathing machines and allow RB to die. The court did not, in the end, make a judgement about this case, though a statement of endorsement by Justice Macfarlane yesterday suggests that it would have reached the same conclusion.

RB has a severe congenital nerve/muscle disorder that has left him in a form of the locked-in syndrome. He is believed to have normal cognition, but is unable to move anything except his eyes and his hands. There is no apparent prospect of a cure, and it appears that he cannot survive without a breathing machine. The case came to the court because RB’s parents could not agree about his treatment.

The sad and difficult case of RB raises a number of very challenging questions. A central issue that the court was grappling with was whether it can be in the best interests of a cognitively normal child to die in the face of severe physical problems. In the earlier, but very similar, case of MB 3 years ago, the Court of Appeal ruled that it was not in the best interests of a ‘locked in’ infant to die. The court in that earlier case placed great emphasis on the presence of normal intelligence, and sided with his parents in ordering that life-saving treatment continue. We do not know for sure what the court would have decided for RB.

But a separate question that appears to have gone unnoticed in much of the commentary about this case is the role of parents in such decisions. The reason that the case ended prematurely was because RB’s father withdrew his opposition to the treatment plan. But what would the court have decided if he had remained opposed? What if both parents had wanted treatment continued (as in the MB case) – would the court then have ordered that treatment be continued? In practice, when such decisions are made without the oversight of the court (the vast majority of cases of potential treatment withdrawal in infants and children) the wishes of parents are extremely important. 

The legal approach to these cases is based firmly on the best interests of the infant. The term ‘best interests’ is slightly opaque, but in essence it means doing what is best for the child. But how could the wishes of parents affect the best interests of the infant? How could it make a difference to the court’s assessment of whether life is ‘intolerable’ for the child? Here are several possibilities.

  1. Epistemic – Parents often spend very long periods at the bedside of their critically ill infant. While nurses and doctors work in shifts, and care for many different children, the parents remain a constant. They often have a unique insight into the capacities and experience of their infants. They may thus be in a privileged position to judge some of the infant’s interests. On the other hand, as barrister Charles Foster noted, their lens may be “distorted” by their need to hold on to hope, and their assessment may be inaccurate.
  2. Constitutive – Some have argued that the interests of an infant include an interest in the wellbeing of their parents. An infant may thus have an interest in a decision that is consistent with a parent’s desires or wishes. We could understand this in terms of the future interests of the child. It is reasonable to think that a child will have, or would have (if capable of forming it) a desire that their loved ones are happy. It is less clear, though, whether this holds when the wish of the parent is that the infant or child’s life end. The child’s future interests would not then ever exist.
  3. Derivative – The reason that best interest decisions are so hard in these cases is that they involve the reconciling of different values. How should future suffering be weighed against the value of life? What is the value of different levels of experience? There are a wide range of different views about this, and no clear, unified answer. Perhaps, given this variability, parents’ values should be given priority over those of other people (doctors for example). On the other hand it is arguably the child who has most at stake, and the values of the child would not necessarily be the same as the parents (for example if the child rejected parent’s religion, or adopted a different religion).
  4. Determinative – Parents may determine whether continued treatment is in the best interests of the child. The personal and financial resources of the parents, and the amount of energy they are willing and able to devote to the care of a child may make a difference to the experience of the child. For a child with very severe impairments that might make the difference between a life that is worth living, and a life that is a net harm to the child.

There is a fifth possibility, which we might call ‘Competitive’ – The parents’ interests may compete with the interests of the child. It may be in the interests of the child to survive, though it may be better for the parents and other siblings if he or she were not to survive. If the best interests of the child are not absolute and overriding, there may be scope to take such competing interests into account.

It is impossible to know how the wishes of parents played into the courts assessment of RB’s interests. But there are a number of reasons why parents’ wishes are important and should be considered. That only makes it all the harder when, as in this case until yesterday, parents are drawn in opposite directions.

Re: Baby RB – Words of Endorsement, Remarks of Mr Justice McFarlane 10/11/09

Father withdraws legal plea over Baby RB's life support Guardian 10/11/09

Baby RB: heartbreak in Court 50 as life of a one-year-old hangs in the balance Observer 08/11/09

Share on