K (a minor), Re

In determining whether life-sustaining treatment should be withdrawn from a child lacking capacity, the court must make its own best-interests assessment. The assessment extends beyond medical opinion and includes ethical, social, moral and welfare considerations. There is a strong presumption in favour of preserving life, but it is not irrebuttable. Treatment may properly be withdrawn where it is futile, burdensome, offers no commensurate benefit and is not in the child’s best interests. The court should weigh the benefits and burdens of continuing or withdrawing treatment, while recognising that each case is highly fact-sensitive.

K was a seriously ill infant with congenital myotonic dystrophy, profound feeding difficulties and a dependence on total parenteral nutrition through a central venous line. Continuing treatment involved repeated infection, invasive procedures, discomfort and a very poor prognosis. The medical team, the parents, the local authority and the guardian agreed that parenteral nutrition should cease and that K should receive palliative care.

The Trust applied for declarations that K lacked capacity and that it was lawful to discontinue parenteral nutrition and intravenous fluids, while providing non-life-prolonging palliative care. The central issue was whether withdrawal of treatment was in K’s best interests.

1. Declaration granted. The court declared that K lacked capacity to make decisions about her physical healthcare and that, having regard to her best interests, the Trust could discontinue total parenteral nutrition and fluids and provide full non-life-prolonging palliative care.
2. The court was not bound by the clinical assessment, although the medical evidence was of central importance. It had to reach its own conclusion on a broad spectrum of considerations, including medical, emotional, ethical, social, moral and welfare matters. The best-interests assessment was not confined by the Bolam Case approach to medical propriety: [1957] 1 WLR 582.
3. There was a strong presumption in favour of preserving life, but the presumption was not irrebuttable. The court had to balance the advantages and disadvantages of continuing or withdrawing treatment. Relevant matters included the treatment’s likely benefits, its burdens, pain, distress, quality of life, prognosis and the possibility of any meaningful improvement. Futile treatment need not be provided.
4. The decisions in W Healthcare NHS Trust v KH [2005] 1 WLR 834 (C.A.) and An NHS Trust v MB [2006] EWHC 507 (Fam) were highly fact-sensitive. They did not preclude withdrawal in K’s case. KH involved a sentient adult whose treating team considered that continued nutrition provided benefit. MB involved an older child with substantially greater cognition, experience and sources of pleasure. K’s age, developmental state, lack of meaningful pleasure, continuing distress and absence of any realistic prospect of improvement materially distinguished her case.
5. On the evidence, continued parenteral nutrition would prolong a life dominated by pain, distress and discomfort, without improving K’s condition or life expectancy. Withdrawal while she remained clinically stable would permit a peaceful death with appropriate analgesic and anxiolytic care. The declarations were therefore granted.