Life and death decisions – no easy answers
The task of a Judge, particularly that of the President of the Family Division, is not an easy nor enviable one. In those cases where the life of a small child is at issue, reaching the right conclusion, whilst treating all involved with sensitivity and respect requires considerable legal skill and expertise but above all an element of humanity. Sir James Munby has again exhibited his considerable mix of technical ability and sensitivity in the case of re Jake (A child)  EWHC 2442 (Fam), decided as recently as 19th August this year.
Not only did the case involve a terminally ill child who was only 10 months old but parents with learning difficulties. Thus not only was there a balance to be struck between the need for medical treatment and the well being of the child but consideration to be given to the weight of the views of distraught parents, who may have struggled more than most with the complex implications of the proposed treatments available.
Jake was the subject of an interim care order as a result of his parents’ learning disabilities and the local authority shared parental responsibility for him. He was seriously ill and considered unlikely to survive beyond early childhood. The NHS Trust under whose care he came, made an application within care proceedings seeking guidance as to the extent of the child’s treatment.
In early May 2015, it was reported that Jake suffered from severe developmental delay. He also experienced frequent epileptic seizures which did not respond to medication. He was fed by gastrostomy. By 21 May, a further medical report noted that he was being cared for on a high dependency unit, was on intravenous fluids and had needed bag and mask ventilation on more than one occasions.
Three alternative treatment options were identified if the child’s condition continued to deteriorate. Option A was termed palliative/end of life care; in the event of prolonged apnoea or cardio-respiratory arrest, Jake would not be resuscitated. In addition if the child was seen to be severely distressed or was in pain due to further deterioration of his medical condition, he could be administered pain relieving medication even though such medication might adversely affect his respiratory ability and shorten his life.
Options B and C provided for full or limited resuscitation and intensive care support thereafter.
The treating clinicians and the local authority favoured Option A, asserting that it was in the child’s best interest and were supported in that view by Jake’s father. Jake’s mother was not surprisingly hopeful that he might recover but sufficiently understanding of the position to express the view that she did not want Jake to be on a “breathing machine”.
Sir James Munby identified that the law governing such situations was reasonably clearly set out in An NHS Trust v H  1 F.L.R. 1471, which was based on the summary of principles set out in An NHS Trust v MB  EWHC 507 (Fam),  2 F.L.R. 319), H and MB applied.
It was noted that The Royal College of Paediatrics and Child Health’s publications “Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice (March 2015)”, reiterates that the underlying rationale for all decisions to withhold or withdraw life-sustaining treatment was that such treatment was not in the child’s best interests. Such withdrawal might be appropriate in the circumstances identified in the sections “Limited quality of life” and “Limited quality of life: where there is no overall qualitative benefit”. Jake’s case fell into the second of those two categories. Life prolonging treatment would be very invasive and would cause the child pain and distress. Although it would be wrong to say that the pain, discomfort and distress caused by his underlying condition would mean that his continued life was intolerable, the medical evidence appeared to indicate that the child’s situation was deteriorating and would inevitably lead to invasive procedures, the burden of which would make life intolerable for him.
The Court therefore approved Option A, finding that the administration of pain relieving medication was entirely proper if the primary purpose of that medication was to relieve distress. Palliative treatment that might have the side effect of shortening life did not prevent that treatment from being lawful.
In passing, Sir James noted that the learning disabilities of the parents did not in any way detract from the need for their views, wishes and feelings to be taken fully into account. They understood the fundamental problems and were in just as good a position as any other parent to express their views.
There are no easy decisions to be made in cases of this nature, this case reminds us of the principles to be applied and how to approach the process.
If you have faced life changing decisions in the medical context and require legal advice contact the medical law team at Clarke Willmott on 0345 2091461.