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Clinical law
Tuesday 28 January 2025

Surviving withdrawal of care

An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing and medical staff rely on when caring for patients.

NR was born with a significant brain malformation, reflected by his anophthalmia, and absent Eustachian tubes. On the day of his birth, he was baptised by a Greek Orthodox priest, who was also his Godfather. NR had suffered mastoiditis, ventriculitis; these complicated by bony destruction. Imaging at the age of 3 years revealed ‘…a loss of the normal cortical grey-white matter differentiation….affecting the majority of NR’s cortex…consistent with the expected evolution of irreversible brain injury that will evolve to encephalomalacia’. In addition, he had hypopituitarism, recurrent deep venous thrombosis, gut dysmotility and recurrent pancreatic pseudocysts. NR had suffered prolonged intubation and ventilation for respiratory infection, itself a complication of recurrent aspiration.

Despite these travails, he had been at home from the age of 6 months, with professional nursing care, together with many hospital visits and admissions, until he was three. But in March 2023 he required further intubation and ventilation. After six more months of this treatment, the hospital applied for court declarations: That it would be lawful, in the event of a deterioration in his condition, to withhold ‘… further inotropes, further escalation of ventilatory support, and provision of extra-corporeal membrane oxygenation and haemofiltration’. In addition, that in the event of a deterioration in NR’s condition following successful extubation ‘… bag valve mask ventilation, endotracheal ventilation and invasive ventilation’ could be withheld. Finally, ‘… in the event of a deterioration in NR’s condition leading to a cardiac arrest, administering cardiopulmonary resuscitation’ could be withheld. These ‘ceilings of care’ were agreed by the court.

Three months later, the hospital made a further application, for a declaration that it was lawful to withdraw life-sustaining invasive ventilation. Having reviewed the evidence, the same judge concluded that

‘…Standing back and weighing all the benefits and burdens to NR from continued treatment, I am quite sure that the burdens far outweigh the benefits. The burdens both of NR’s conditions and symptoms, and of the invasive treatments, are many and they are heavy. They include the insertion of the endotracheal tube and invasive ventilation, frequent suctioning, total parenteral nutrition, blood samples being taken, repeated sepsis and episodes of septic shock, osteopaenia leading to femoral fracture and vulnerability to further fractures, and seizures (albeit currently relatively well controlled). Even now that he is relatively stable, and has very limited awareness, he sometimes becomes visibly distressed or in pain. NR cannot enjoy any of the pleasures of being a four-year-old child save for being able to be soothed when in distress by his parents….Now his life is grossly diminished and full of burdens’.

The court was told that NR would survive ‘probably hours, sometimes days’ after extubation at that stage. The court sanctioned extubation and declared that it was not in NR’s best interests to be resuscitated in the event of cardiac or respiratory arrest.

NR was transferred, invasively ventilated, to a hospice and extubated in May 2024.

But he was able to breathe for himself.

Within a month he was home, enterally fed with blended feeds, opening his bowels normally. Urinary catheterisation was no longer required, and he could sit supported in a chair, travel by car, being taken to the park. For this reason, his parents applied to the court to have the ‘ceilings of care’ discharged, because his substantial change in circumstances had rendered them inappropriate. NR’s parents perceived that the ‘…overall effect of the declarations leads healthcare professionals not to treat NR as actively as they might otherwise’.

The court discharged all the declarations placing limits on the care that NR might require in the future. This may be the first case that has appeared in the law reports; where a child has survived for months despite the withdrawal of his life sustaining treatment. The inherent uncertainty in ‘prognosis’ is perhaps more of a surprise to lawyers than it is to clinicians.

Mr Robert Wheeler
Department of clinical law
January 2025

Re NR (A Child: Withholding CPR) [2024] EWHC 61 (Fam)
Re NR (A Child: Withdrawal of Life-Sustaining Treatment) EWHC 910 (Fam)
Re NR (A Child: Ceilings of Treatment) [2024] EWHC 2400 (Fam)