Seriously sick child and distraught parents – where to draw the line

26 February 2018 by Rosalind English

Alder Hey Children’s NHS Foundation Trust v Evans, James and Alfie Evans (a child by his guardian Cafcass Legal) [2018] EWHC 308 (Fam) – read judgment

This was an application by the hospital for a declaration to allow their doctors to withdraw life support from a 19 month old child, Alfie. He suffers from a progressive, ultimately fatal neurodegenerative condition, probably a mitochondrial disorder. His epileptic seizures have not been brought under control by anti-convulsant treatment. The evidence before the court was that even if these seizures were to end, his brain is “entirely beyond recovery”. However caused, his neural degeneration is both “catastrophic and untreatable”.

In simple terms the thalami, basal ganglia, the vast majority of the white matter of the brain and a significant degree of the cortex have been wiped out by this remorseless degenerative condition.

The MRI scans of the child showed that the thalami, which regulate the pathways of the brain, had entirely disappeared. This controls the stimuli to the most basic sensory functions. Alfie has lost the capacity to hear, see, smell or respond to touch, other than reflexively.He is tube fed into the small intestine and has suffered a number of urinary tract infections. Despite all of this, the high quality intensive care that Alfie is receiving at Alder Hey could “sustain him for a long time”.

The medical consensus was that the combination of the futility of Alfie’s life (i.e. the absence of any prospect of recovery) and the uncertainty of knowing whether the child is suffering were key factors in withdrawing life support.

The Trust first brought this application in December 2017.  The parents, opposing this application, represented themselves. Both are Roman Catholics, brought up in that tradition. The mother chose not to give evidence.  The father pressed for Alfie to be permitted to travel to a hospital in Rome and provided with a tracheostomy and PEG feeding. If that proffered no solution, he argued that there should be a further transfer to a hospital in Munich. If that too were to fail the father argued that Alfie should be allowed home to die “when he decides to”.

Hayden J noted the “extremity” of the father’s grief which was “raw and intense.” It was the judge’s very clear impression that he wanted to do everything in his power to buy time for his son. But the Trust was entirely correct to oppose the father’s application.  The medical evidence did not allow the court or any of the litigation teams to assume that Alfie is free from pain. Instead, all the evidence pointed compellingly towards futility of treatment.

In conclusion, Hayden J observed that every reasonable option had been explored for Alfie.  The continued provision of ventilation, in circumstances which I am persuaded is futile, now compromises Alfie’s future dignity and fails to respect his autonomy.

I am satisfied that continued ventilatory support is no longer in Alfie’s best interest.

The fact that the court has given the hospital the authority to withdraw life support and transfer Alfie to palliative care is not the end of the story; the family’s plans to appeal could derail or delay the implementation of this declaration.

Related posts:

• Best interests, hard choices: The Baby C case
• Life sustaining treatment – whose decision?
• Charlie Gard posts