RE JAKE (A CHILD) (2015)

Keywords: Capacity, disabled parents, learning disabilities, end of life care, medical treatment.

The case concerned the medical treatment of a gravely ill child (10 months old). The issues were: the extent to which aggressive and invasive steps should be taken to prolong life; and the administration of pain medication which might shorten life. Parental responsibility for the child was shared between the parents (who both had learning disabilities) and the local authority.

The child had uncontrolled epilepsy, severe developmental delay and possibly a progressive underlying condition, was being fed by gastrostomy and was not expected to survive early childhood. By the time of the hearing, he had been intermittently ventilated, was receiving intravenous fluids and was in a high dependency unit. The consultant had proposed three possible courses of treatment if his condition continued to deteriorate, including Option A – palliative/end of life care, including a decision not to resuscitate and provision for pain relief, even where that might reduce respiratory drive and shorten life as a secondary effect.

The father, the local authority and the hospital agreed that Option A was in the child’s best interests. The mother hoped that the child might recover but did not wish him to be placed on the “breathing machine”.

The court referred to best practice guidance Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice (March 2015, Royal College of Paediatrics and Child Health) and determined that limitation of treatment was appropriate because: the child had a limited quality of life where there was no overall qualitative benefit to very invasive potential treatments which would themselves cause the child pain and distress. This was held to be the case even though the current pain, discomfort and distress experienced by the child did not mean that his continued life was intolerable. However the medical evidence indicated that the child’s condition was deteriorating and would lead to invasive procedures which, taken overall, would make life intolerable for the child.

It was further held that the provision permitting the administration of pain medication with the primary purpose of relieving distress, even if a side effect was to shorten life.

This judgement is in line with existing case law from An NHS Trust v H [2013] 1 F.L.R. 1471 and  An NHS Trust v MB [2006] EWHC 507 (Fam), [2006] 2 F.L.R. 319).

Regarding the parents’ learning disabilities, the judgment comments (Obiter) on the need for the views, wishes and feelings of the parents to be taken fully into account notwithstanding their learning disabilities. They were able to understand the fundamental problems and were able to express their views as well as any other parent.

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