An NHS Foundation Trust v R (Child) & Ors

In determining a child’s best interests, the court must consider welfare in its widest sense from the child’s point of view. This includes medical, emotional, social and existential factors, together with the effect on the child’s family. There is a strong but rebuttable presumption in favour of preserving life. Life-sustaining treatment may nevertheless be withdrawn where its burdens, including foreseeable future burdens, clearly outweigh its benefits to the child. The court must make its own evaluation and must not devalue the child’s life because of disability. Where the child has extremely limited awareness and progressive, incurable disease, continued invasive ventilation may be futile and contrary to the child’s best interests.

The Trust sought declarations concerning the treatment of a 14-month-old child with Down’s syndrome, progressive mitochondrial myopathy, profound developmental delay and complete dependence on mechanical ventilation. The parents sought continued ventilation and a planned move home with a package of care. The treating clinicians and Children’s Guardian supported withdrawal of ventilation with sedation, allowing the child to die peacefully. The central issue was whether continued long-term ventilation, including home ventilation subject to non-escalation of treatment, was in the child’s best interests.

1. The court had to decide the issue from the child’s point of view, treating welfare in its widest sense as paramount. Relevant considerations included the child’s medical condition, awareness, capacity for pleasure and suffering, the burdens and benefits of treatment, family relationships and beliefs, and the likely future course of the illness.
2. A strong but rebuttable presumption applied in favour of prolonging life. A decision to permit death could therefore be reached only where it was clearly shown to be in the child’s best interests; any genuine doubt was to be resolved in favour of continued life.
3. The court was required to make its own evaluation. Respect for the parents’ profound commitment and religious beliefs was important, but their wishes could not determine the outcome where continued treatment was not in the child’s interests.
4. The child had some awareness and experienced comfort, pain and discomfort, but there was no dependable evidence of meaningful cognitive or purposeful interaction with his environment. His progressive condition was incurable and ultimately fatal. Continued ventilation would bring increasing burdens, including painful or distressing treatment, while providing little positive experience beyond preserving life.
5. The proposed home-care arrangement did not alter the assessment. The facts of another child receiving community ventilation could not determine this child’s best interests, and there were real concerns about the practicability of a non-escalation agreement during a crisis.
6. The treating doctors and Children’s Guardian were correct. Continued long-term ventilation was futile and would progressively cause greater suffering for little benefit. It was therefore in the child’s best interests for ventilation to be withdrawn. Interim arrangements were made pending the final order.