Withdrawal of Child’s Medical Treatment

An NHS Trust asked the High Court to declare that it was in a child’s best interests to withdraw medical treatment with the effect that she be allowed to die: Guys and St Thomas’s Children’s NHS Foundation Trust v Knight & Anor [2021] EWHC 25. Poole J.

Her mother opposed the application.

P – described by the judge as a much loved five year-old girl who had the most dedicated and loving support of her mother and other family – was diagnosed with acute necrotising encephalopathy (ANE).

ANE was a rare condition in which an acute febrile disease, usually a viral infection or influenza, ultimately resulted in brain damage (encephalopathy).

P, who now had severe brain damage, was kept alive by mechanical ventilation through a nasal endotracheal tube.

Expert neurologists and intensivists agreed that she probably felt no pain and experienced no pleasure.  She was not conscious of her environment.  There was no prospect of improvement in her condition.

The mother and Trust had been unable to reach agreement about continuing ventilation.

The Trust had carried out best interest reviews.  It sought second opinions from independent consultants.  Its Ethics Committee had given its opinion.

Mediation had taken place but was unsuccessful.  This was an exceptional case; only such cases came before the courts.

At the mother’s request, the trial judge visited P in hospital to assist in connecting the forensic process with the real circumstances in which mother and child found themselves.

In Airedale NHS Trust v Bland [1993] AC 789, Lord Goff of Chieveley (with whom Lord Keith of Kinkel and Lord Lowry agreed) pointed out that “the question is not whether it is in the best interests of the patient that he should die.  The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of medical treatment.”

In the Court’s view it was necessary to determine P’s best interests, and whether to make the declarations sought, in the context of three available options:

A         Continuation of life-sustaining mechanical ventilatory support and treatment within a PICU setting.

B         A trial of portable ventilation with a view to transition to long term ventilation and life sustaining treatment at home.

C         Withdrawal of life sustaining mechanical ventilatory support.

The key legal principles were articulated in Portsmouth NHS Trust v Wyatt & [2005] EWCA Civ 1181 and by Holman J in An NHS Trust v MB [2006] EWHC 507:

• The judge must decide what is in the best interests of the child.
• In making that decision the welfare of the child is the paramount consideration.
• The judge must look at the question from the assumed point of view of the child.
• There is a strong presumption in favour of a course of action that will be likely to preserve life but that presumption is not irrebuttable.
• The term “best interests” encompasses medical, emotional and all other welfare issues.
• The court must consider the view of the doctors and parents.
• Each case will turn on its own facts.
• The court must conduct a balancing exercise in which all relevant factors are weighed. It is not a mathematical exercise but an objective one.

The leading case was Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591 per Baroness Hale, notwithstanding that this case related to an adult against the backdrop of the Mental Capacity Act 2005.

The focus was whether it was in the patient’s best interests to give the treatment rather than whether it was in her best interests to withhold or withdraw it.

The Court had to consider what the outcome of the treatment was likely to be, try to put itself in the place of the individual patient and ask what the patient’s attitude was likely to be.  And it must consult others looking after her or who were interested in her welfare.

Poole J was satisfied that it was not in P’s best interests to continue to receive long term ventilation or other life sustaining treatment.

He had to consider P’s interests from her perspective.  Notwithstanding that life should be preserved, it was not in her best interests that her life should be prolonged.  Her welfare was the paramount concern.

P was in a persistent vegetative state and had been for well over a year.  She had no conscious awareness and gained no benefit from life, but she daily bore the dual burdens of her profoundly disabling condition and the intensive treatment required to prevent it from ending life.

The evidence drove the Court to the conclusion that P had no awareness of her environment nor of interaction with others, including her family.

No benefits could be identified to P from continued ventilation, whether social, emotional, psychological or otherwise.  Prolonging her life would only prolong the burdens.

Today the Court made the following declarations:

• P should not be provided with a tracheostomy.
• Mechanical ventilation should be withdrawn.
• There be clearly defined limits on the treatment provided to P after that withdrawal of ventilation, with the effect that she would be allowed to die.