The High Court has been asked to decide on the best interests of RB, a one-year old child with congenital myasthenic syndrome (CMS). RB’s mother is supporting the NHS Trust’s application to withdraw life-sustaining treatment from RB, while his father opposes the application.
In such cases, a balancing approach is used by the court, looking at the child’s quality of life:
The judge must decide what is in the child’s best interests. In making that decision the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient (In re J  Fam 33 [Athens login required]). There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable (In re J). The term “best interests” encompasses medical, emotional, and all other welfare issues (In re A  1 FLR 549 [Athens login required]). The court must conduct a balancing exercise in which all the relevant factors are weighed (In re J) and a helpful way of undertaking this exercise is to draw up a balance sheet (In re A).
In earlier cases, the test adopted was that treatment should be provided unless the child’s life post-treatment would be “intolerable” (Re B (A Minor) (Wardship: Medical Treatment)  1 WLR 1421, 1424 (Dunn LJ, CA) [Athens login required]; Re J  Fam 33, 55 (Taylor LJ)) [Athens login required]. The test of intolerability has since been abandoned, in favour of the balancing approach described above (Burke  EWCA Civ 1003, -; Portsmouth Hospitals NHS Trust v Wyatt and another  EWCA Civ 1181, .)
On the RB case, the Guardian is reporting that:
If the hospital succeeds in its application, it will be the first time a British court has gone against the wishes of a parent and ruled that life support can be discontinued or withdrawn from a child who does not have brain damage.
This assertion relies on a very fine distinction (between withdrawal, and withholding following withdrawal) made by Holman J. in An NHS Trust v B and others  EWHC 507, -. In that case, Holman J. ruled in favour of continuing ventilation (against the recommendation of the NHS Trust) of MB, aged 18 months, who was suffering from type 1 spinal muscular atrophy (SMA):
M has age appropriate cognition, and does continue to have a relationship of value to him with his family, and does continue to gain other pleasures from touch, sight and sound. . . . It is impossible to put a mathematical or any other value on the benefits. But they are precious and real and they are the benefits, and only benefits, that M was destined to gain from his life. I do not consider that from one day to the next all the routine discomfort, distress and pain that the doctors describe (but not the ones I have now excluded) outweigh those benefits so that I can say that it is in his best interests that those benefits, and life itself, should immediately end. On the contrary, I positively consider that as his life does still have benefits, and is his life, it should be enabled to continue, subject to excluding the treatment I have identified.
In that case (at ), Holman J. asserted the uniqueness of the case before him:
There have been legal cases and decisions in which approval has been given for the withdrawal of life support from, followed by immediate death of, brain dead or severely brain damaged children or patients. And there have been legal cases and decisions (of which the case of Charlotte Wyatt is an example) in which advance approval has been given not to embark upon (i.e. to withhold) forms of treatment or life support, if later needed, if the condition of a child is very poor. So far as I am aware, no court has yet been asked to approve that, against the will of the child’s parents, life support may be withdrawn or discontinued, with the predictable, inevitable and immediate death of a conscious child with sensory awareness and assumed normal cognition and no reliable evidence of any significant brain damage.
Holman J. then went on to distinguish another case involving type 1 SMA, Re C (a minor) (medical treatment)  1 FLR 384 (Athens login required), in which Sir Stephen Brown (the then President of the Family Division) held that it was in the 16 month old child’s best interests “that she be taken off ventilation and that it should not be reintroduced if she should suffer a further respiratory arrest.” Holman J. explained the distinction between the two SMA cases as follows (at ):
She [C], like M, was conscious. Further, she was able to recognise her parents and to smile. However, unlike M, she was only on intermittent positive pressure ventilation. The doctors considered, and the parents agreed, that she should be weaned off that ventilation before she became fully dependant upon it. The issue was whether, if or when she suffered a respiratory arrest, positive pressure ventilation should be restarted. The parents sought an order that it should be, but Sir Stephen Brown P declined to grant one, in part because of the well established principle that a court will not order a doctor to undertake a course of treatment which the doctor is unwilling to do; but also because Sir Stephen expressly held that it was in the best interests of the child not later to reimpose ventilation if needed. Since the doctors considered that a respiratory arrest would be inevitable the case is very close to the present one. But it did not involve or contemplate the immediate death of the conscious child; and the actual withdrawal of intermittent ventilation was agreed to, and supported, by the parents.
I’m not entirely convinced by this distinction. Is it substantial enough to bear the weight placed upon it by the Guardian? Certainly the case of RB is not as unique as the Guardian suggests.
It is always difficult to assess the best interests of a baby when deciding whether treatment should be continued or withdrawn. The factors which were important for Holman J. in MB were the existence of an interactive relationship with the parents, and the capacity to experience pleasure. Based on the media reports of the RB case, these factors appear likely to play a significant role in the High Court’s decision.