MB was 18 months old. He was admitted into hospital at the age of 7 weeks where he has remained ever since. He was diagnosed as suffering from Type 1 spinal muscular atrophy (SMA). This is a congenital condition resulting from an inherited genetic abnormality. Type 1 SMA is the most severe of each of the 3 types of SMA and MB was described by one of his doctors as the most severely affected child that he had ever seen. SMA is a degenerative and progressive illness affecting the voluntary muscles which become progressively weaker and may ultimately cease to work at all. Death is usually inevitable in a true Type 1 case. In MB’s case he could formerly cry, smile, swallow, breathe and move all of his limbs. At the time of the declaration requested by the NHS Trust, MB could barely move at all. He was receiving positive pressure ventilation via an invasive endo-tracheal tube and could not swallow and was being fed through a gastronomy tube. It was not possible to determine whether MB had any brain damage or loss of cognitive functioning, though the court in this case held that it had to presume that, in the absence of conclusive evidence to the contrary, he did have normal cognitive ability.
The NHS Trust sought the following declaration:
It shall be lawful notwithstanding the parents’ refusal to consent, and in MB’s best interests for the medical staff (a) to withdraw all forms of ventilation from him and (b) generally to furnish such treatment by way of pain relief or sedation and nursing care as may be appropriate to ensure MB suffers the least distress and pain.
This was a novel case in the sense that a court had not previously been asked for approval, against the wishes of the parents, to withdraw or withhold life support with the inevitable result of death, of a child who had to be presumed to have normal cognition, sensory awareness and no reliable evidence of brain damage.
The parents issued a cross-application that it should be lawful and in MB’s best interests for a tracheotomy to be performed to enable long term ventilation.
The court stated that the correct approach to the issue was well-established and clear. Where a child lacked the capacity to make a decision, and a dispute arose between parents, treating doctors and medical staff, a best interests test had to be applied. This included taking into account every relevant consideration, so that the court could balance all conflicting considerations to see where the best interests balance properly lies. Within the test lay the strong presumption attached to the prolongation of life, Wyatt v Portsmouth Hospital NHS Trust 2005 EWCA applied. The medical evidence was undisputed and it was agreed that MB had an intolerably poor quality of life which would only get worse, although it was significant that it was not possible to know whether he was comfortable or in distress or pain.. However, it was the medical opinion that it was in the best interests of MB that ventilation should be withdrawn allowing him to die, probably very soon afterwards. The Joint Expert report provided a number of options or management choices for MB’s future. The parents favoured option 3 to which their cross application related, which was to perform a tracheotomy and continue long-term ventilation. The NHS Trust favoured option 4, to remove the endo-tracheal tube and provide palliative end of life care. The court dismissed the parent’s cross-application on the basis that it could not order a medical intervention which might be against the doctors’ professional judgement and will. A ‘balance sheet’ of benefits and burdens of all the factors (as recommended by the Court of Appeal in such cases) was drawn up by the NHS Trust, MB’s Guardian and the representatives of the parents.
The court, having considered the benefits and burdens suggested by the respective parties, was not persuaded that it was in the best interests of MB to discontinue ventilation with the inevitable result that he would die, and therefore refused to make the declaration sought by the NHS Trust. It was positively in MB’s best interests to continue with the continuous pressure ventilation and the accompanying medical care. What one doctor suggested as a “good death” ie where death could be planned in advance rather than an uncontrolled and potentially more distressing situation, was outweighed by the benefits of MB’s struggle for survival and life itself. However, where procedures were required that went beyond maintaining ventilation, namely cardio pulmonary resuscitation (CPR) and ECG monitoring, the administration of intravenous drugs or antibiotics, and blood sampling, where the infliction of pain was required, then the court held that it would be lawful to withhold or not to administer such forms of treatment. As such, it was a declaration with a permissive effect, in other words medical staff may chose to embark on the listed treatments but it would not be unlawful for them to decide not to do so. The doctors and parents ought to continue to consult and review, but the time might come when the parents had to face up to the inevitability and need for the withdrawal of ventilation.