NR (A Child: Ceilings of Treatment after Survival of Withdrawal of Life Sustaining Treatment), Re

Declarations permitting the withholding of life-sustaining treatment should be made only where they protect or enhance the child’s best interests. They must address a particular decision on a particular issue, rather than oversee a treatment plan or provide a general decision-making framework.

Where circumstances materially change, the court must reassess the child’s best interests on the current evidence. Medical prognoses remain valuable even though they are probabilistic and may be confounded by unexpected outcomes. Where future circumstances are too uncertain to identify when treatment would be contrary to the child’s best interests, an advance declaration withholding treatment may be inappropriate.

NR, a child with severe underlying disabilities, survived for several months after the court authorised withdrawal of invasive ventilation and had returned home without total parenteral nutrition or an indwelling urinary catheter.

His parents applied to discharge earlier declarations permitting the withholding of cardiopulmonary resuscitation, inotropes, escalation of ventilatory support, extracorporeal membrane oxygenation and haemofiltration. The Children’s Guardian supported the application. The Trust accepted that it would not have sought such declarations in NR’s present circumstances but argued that declarations concerning CPR and inotropes would assist clinicians.

The central issue was whether the changed circumstances justified continuing, varying or discharging the declarations.

1. All declarations discharged. The court discharged the declarations permitting the withholding of CPR and other ceilings of treatment.

2. The four governing principles remained applicable: NR’s best interests were paramount; best interests had to be assessed in the widest sense; there was a strong presumption in favour of preserving life which could be displaced by competing considerations; and the views of parents and clinicians had to be considered but were not decisive.

3. The circumstances had materially changed. NR could breathe without invasive ventilation, was fully enterally fed, lived at home and could enjoy aspects of family and community life. The earlier justification for withholding CPR, namely that CPR would lead only to a return to a burdensome state requiring invasive treatment, no longer applied. The balance of benefits and burdens had therefore changed.

4. It was impossible to predict when or in what circumstances CPR might be required, or what NR’s prognosis would then be. The court could not construct a reliable decision-making flow chart in advance. Adding caveats would create declarations that effectively left the decision to clinicians, although clinicians were already required to decide treatment according to NR’s best interests.

5. Following Portsmouth Hospitals NHS Trust v Wyatt [2005] 1 WLR 3995 and R (Burke) v General Medical Council [2005] 3 WLR 1132, the court emphasised that it should decide a particular issue when necessary, not act as a general advice centre or oversee a treatment plan. Declarations should be made only where they protect or enhance the child’s best interests.

6. The unexpected survival did not show that the earlier medical opinions were unsound. Prognoses are based on probabilities, and the court must remain vigilant and humble in the face of apparent certainty while continuing to treat medical evidence as valuable.