Jake (A Child), Re

Life-sustaining treatment may be withheld where it would be futile, excessively burdensome, or provide no overall benefit to a child. The assessment must distinguish burdens arising from the child’s underlying condition from burdens caused by the proposed treatment. Treatment intended primarily to relieve pain or distress remains lawful even if an incidental consequence may be to shorten life. Parents’ wishes and feelings must be fully considered, including where a parent lacks capacity or cannot decide the matter personally.

An NHS Foundation Trust applied urgently for declarations concerning the medical treatment of Jake, a gravely ill ten-month-old child with drug-resistant seizures, severe developmental delay, a movement disorder and a deteriorating neurological condition. The hospital sought authority to limit ventilation, resuscitation, invasive treatment, intravenous antibiotics and parenteral nutrition, while permitting analgesia and sedation for comfort.

The application was supported by the local authority and guardian and was not opposed by the parents. The central issue was whether the proposed limitation of treatment was lawful and in Jake’s best interests, and whether medication intended to relieve suffering could lawfully be given despite a possible life-shortening side effect.

1. Declarations granted. The proposed Option A palliative treatment plan was lawful and in Jake’s best interests. The declarations authorised withholding specified forms of ventilation, cardiac massage, resuscitation drugs, blood sampling, intravenous antibiotics and parenteral nutrition in the circumstances identified in the order.
2. The governing principles could be taken from Re KH (Medical Treatment: Advanced Care Plan) [2013] 1 FLR 1471, substantially based on An NHS Trust v MB (A Child represented by Cafcass as guardian ad litem) [2006] EWHC 507 (Fam), [2006] 2 FLR 319, together with the Royal College of Paediatrics and Child Health guidance.
3. The relevant guidance recognised limitation of treatment where life could not be prolonged significantly, where death was imminent or inevitable, or where continued treatment would provide no overall qualitative benefit. It also recognised that treatment may be limited where its own physical, psychological or emotional burdens cause significant pain and distress.
4. The principal basis here was the burden of invasive treatment required to sustain life. The judge accepted that Jake’s existing condition, considered by itself, had not been shown to make continued life intolerable. That distinction did not prevent limitation of treatment where ventilation or cardiopulmonary resuscitation would be invasive, painful, burdensome and highly likely to be futile.
5. Following the principle associated with Bodkin Adams, analgesia or sedation whose primary purpose was to relieve pain, suffering or distress was lawful even if, as an incidental consequence, it reduced respiratory drive or shortened life in an end-of-life situation.
6. The parents’ learning disabilities did not reduce the importance of their wishes and feelings. Their understanding of the fundamental issues was to be taken fully into account. Parents who could not evaluate every hypothetical or who felt unable to decide were nevertheless entitled to be consulted and given every opportunity to express their views, subject to the demands of a medical emergency.