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An NHS Trust v MB and Others [2006] EWHC 507 (Fam)

Application for declaration sanctioning withdrawal of ventilation from terminally ill child refused.

Family Division: Holman J (15 March 2006)

Application for declaration sanctioning withdrawal of ventilation from terminally ill child refused.

This case concerned a child, M, born in August 2004. At birth he appeared normal, but his parents soon realised that he was unwell or not developing properly. When he was seven weeks old, doctors diagnosed that he was suffering from spinal muscular atrophy (SMA). The condition is degenerative and progressive, ie it can only get worse, and it was agreed that the disease in M was very severe indeed; he had not been able to breathe unaided since July 2005.

In December 2005, the NHS Trust applied, in accordance with well-established procedure, for a declaration that it shall be lawful, notwithstanding his parents' refusal to consent, and in M's best interests for medical staff to withdraw all forms of ventilation from him, and generally to furnish such treatment as may be appropriate to ensure M suffers the least distress and pain. Shortly before the hearing, the parents issued a cross-application in which they sought a declaration that it shall be lawful and in M's best interests for a tracheostomy to be performed to enable long-term ventilation to be carried out.

The NHS Trust considered that M's quality of life was so low, and the burdens of living were now so great, that it was unethical or 'cruel' to continue artificially to keep him alive. There was a formidable body of medical evidence of very high quality from the treating doctors and experts appointed in the case, who signed an agreed Joint Expert Report stating that it was in M's best interests that the ventilation be withdrawn and he be allowed to die, probably 'very quickly'. Furthermore, M's own guardian supported the Trust.

A number of possible options for the future were identified in the Joint Expert Report, including ones which contemplated prolonging life as long as medically possible. In seeking to establish M's best interests, the court's task was one of balancing all the factors, and the judge welcomed the Court of Appeal's suggestion that the best and safest way of reliably doing this was to draw up a list on which were specifically identified, on the one hand, the benefits or advantages and, on the other hand, the burdens or disadvantages of continuing or discontinuing the treatment in question.

It was submitted on behalf of the parents that predicted future deterioration was irrelevant and should be disregarded altogether in assessing current best interests; on behalf of the Trust, it was submitted that the deterioration was progressive, inexorable and continuing all the time and, where the graph of future deterioration was so steep and was inevitable, that was a matter to go in the balance.

The judge heard evidence from both of M's parents, and summarised the applicable law in a helpful list of propositions, based on the 'intellectual milestones' referred to by the Court of Appeal in Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181. The judge believed that this was the first case in which the court was being 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.

The judge found that, despite M's short life expectancy, it was impossible to say that the child was 'in the dying process', and there were sufficient benefits in not making the declaration at this time as to outweigh the burdens.

The judge considered that there was no legal distinction between withholding or withdrawing life support, and that the 'best interests' test applied equally to both situations. On the issue of deterioration, he considered that, where such deterioration was inevitable, continuous and relatively rapid, it was unrealistic to leave it out of the overall balance, although it was not a determining factor in this case.

The judge stressed that this was a very fact-specific decision taken in the actual circumstances as they affected this child at a specific point in time; it was not a policy-based judgment and was not designed to have 'implications'.

Accordingly, the judge refused to make the declaration sought by the NHS Trust that it was currently in M's best interests to discontinue ventilation with the inevitable result that he would die immediately. Instead, he would make a declaration that it would be lawful to withhold specified invasive procedures which, if they became necessary at a later date, would indicate that M had moved naturally towards his death despite the ventilation.

Read the full text of the judgment here