Re NR
Summary
In this case, Poole J dealt with a quite extraordinary set of facts: an order authorising the withdrawal of life-sustaining ventilation which culminated, via circuitous routes and serendipity, to a child, previously confined to a critical care unit, living at home with his parents.
This case was the third in a series of cases concerning NR, a now four year-old boy, born with a severe brain malformation. In previous hearings in January and April 2024 – Re NR (A child: Withholding CPR) [2024] EWHC 61 (Fam); NR (A child: Withdrawal of Life Sustaining Treatment) [2024] EWHC 910 (Fam) – Poole J had made orders, first authorising ceilings of care including CPR and escalation of ventilatory support, neither of which were to be carried out in the event of a deterioration in NR’s health; and subsequently, an order authorising withdrawal of life-sustaining treatment on the understanding that NR would die shortly thereafter.
Poole J had heard evidence at the April withdrawal of treatment hearing that there was “no realistic prospect of NR being able to return home for care” (paragraph 19); that extubation would be “one-way” (paragraph 39); and that there was no prospect of NR moving to fully enteral feeding. In light of this evidence, Poole J had concluded that the burdens of treatment far outweighed the benefits of keeping him alive and granted the Trust’s application for invasive ventilation and life-sustaining treatment to be discontinued.
In the event, as Poole J explained in the September 2024 judgment:
2. Over four months after extubation, not only is NR still alive but he is now living at home. He is breathing for himself. He is fully enterally fed. He is urinating normally having previously had an indwelling urinary catheter. He has confounded all medical expectations and his case underlines the maxim that "medicine is a science of uncertainty and an art of probability." (Sir William Osler, 1849-1919).
It was in this context that NR’s parents, observant Christians who had never accepted the Trust’s evidence as to their son’s prospects of long-term survival, brought an application for the previous orders establishing ceilings of care and a withdrawal of life-sustaining treatment to be set aside. As Poole J records, in light of their son’s unanticipated survival, NR’s parents considered that their views about NR had been vindicated; they believed that the Trust “[did] not truly value NR’s life” (paragraph 3).
Casting a more positive light on the wholly unexpected outcome, Poole J observed:
16. A decision to withdraw life sustaining treatment is not a decision to bring about the death of a patient, but a decision that the continuation of the treatment is not in their best interests. NR's survival and progress have shown that the withdrawal of invasive ventilation was indeed in his best interests. At the time, based on the prognoses provided to the Court, I decided that ventilation should cease despite, not because of, the strong expectation that NR would die soon afterwards. I do not wish to minimise the emotional turmoil suffered by Mr and Mrs R and the continuing burdens that NR suffers because of his conditions, but it seems to me to be a wonderful surprise that NR has confounded expectations, that he no longer requires continuing invasive interventions and, in particular, that he has been able to return home to the loving care of his devoted parents.
Poole J noted with approval Tor Butler-Cole KC’s submission on behalf of the Guardian at paragraph 25 that:
in a case such as this where NR's circumstances are not fully predictable and where the Trust accepts that new medical evidence at the relevant time may mean that any declaration granted is not in fact followed, the Court should exercise caution before making or continuing any declarations.
Baroness Hale endorsed such caution in Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67. In Portsmouth Hospitals NHS Trust v Wyatt [2005] 1 WLR 3995, the Court of Appeal said:
"117. We would, however, as a matter of practice counsel caution in making declarations involving seriously damaged or gravely ill children which are open-ended. In the same way that this court said in R (Burke) v General Medical Council (Official Solicitor intervening) [2005] 3 WLR 1132 that it is not the function of the court to be used as a general advice centre (see para 21 of this court's judgment), it is, in our view, not the function of the court to oversee the treatment plan for a gravely ill child. That function is for the doctors in consultation with the child's parents. Judges take decisions on the basis of particular factual substrata. The court's function is to make a particular decision on a particular issue.
118. As a general proposition, therefore, we have reservations about judges making open-ended declarations which they may have to revisit if circumstances change."
Having reviewed the evidence of NR’s remarkable survival and heard of the significant change in his circumstances – which included both a family life at home and visits to the park – both the declaration permitting the withholding of CPR and the declarations regarding ceilings of treatment were discharged.
Poole J’s conclusion at paragraph 35 is likely to be cited with great frequency by family members opposing withdrawal of treatment going forward:
This case does not establish that the Court cannot rely on medical evidence as to the prognosis for a critically ill patient. It does show that medicine is a science of uncertainty. The Court has to deal with medical predictions and probabilities and such evidence is very valuable. A prediction should not be disregarded simply because it may prove to be wrong. However, confident predictions are sometimes confounded and the Court must be vigilant and humble in the face of apparent certainty.
Comment
We would expect – indeed, hope, given the profound distress experienced by NR’s family – that the facts of this case would remain rather extraordinary. It remains, however, a useful reminder of the importance for decision-makers in re-examining and revisiting decisions in the context of a changing evidential background. The old adage, “when the facts change, I change my mind” applies: decisions made in the best interests of a child – or P – are not necessarily set in stone. This case reiterates the importance for decision-makers of keeping an open mind in an area of medicine and law which is always evolving.