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Treatment withheld after phone call

A senior family court judge gave doctors permission to withhold life-support treatment from a sick seven-year-old girl against her parents' wishes - after analysing evidence over the telephone.

Mr Justice MacDonald granted an emergency application by a hospital trust with responsibility for the sick youngster's care following a "telephone conference hearing" which began shortly before 7pm on June 23 and lasted more than three hours.

Detail of the case has emerged in a written ruling by the judge - who sits in the Family Division of the High Court in London - published on a legal website.

The judge said the girl had spinal muscular atrophy - a genetic disease which causes muscle weakness and progressive loss of movement - and he said her condition had deteriorated in an "acute manner" in recent months.

He said he decided to make a decision over the telephone when there had been "no time for a wider welfare investigation to take place" after "reluctantly" concluding that the "matter was sufficiently urgent".

The girl's father - who speaks English as a second language - had represented himself and her mother at the hearing.

Doctors had been represented by a barrister.

Mr Justice MacDonald gave permission for doctors to withhold "invasive ventilation" and said it would be lawful not to resuscitate the girl if she went into cardiac arrest.

The judge said he had concluded that such moves would be in the girl's "best interests".

He said the decision was reviewed at a hearing in London three days later - when the girl was still alive but in a "critical" condition.

At that hearing the girl's father had been represented by a barrister.

The youngster has not been identified in the written ruling - but the judge said the trust which made the "out of hours" application was the King's College Hospital NHS Foundation Trust, which is based in London.

"The 'Out of Hours' service is provided for applications that are considered to be urgent. The term 'urgent' in this context means that an order is required to regulate the position between the moment the order is made and the next available sitting of the court," said Mr Justice MacDonald in his ruling.

"It should go without saying that, ordinarily, decisions of the gravity of that with which the court is currently concerned should be taken at a hearing in normal court hours and that the 'Out of Hours' service does not represent the ideal 'venue' for the same.

"Of course, exceptionally, there will be cases where the court has no option but to make a substantive decision out of hours to ensure the best interests of the child are safeguarded."

He said he had discussed the urgency of the case with the barrister representing the trust and concluded that decisions had to be made.

"I reluctantly came to the conclusion that the matter was sufficiently urgent to justify the court proceeding to determine the application pending the matter being able to return to court during normal hours," said the judge.

"It seemed to me that the difference of opinion between the parents and (the girl's) treating clinicians was one that was both real and firmly established in nature and was one which, if not resolved, could impact adversely on (the girl's) best interests by diverting the attention of the doctors, and indeed the parents, away from exclusive focus on (her) needs at a highly critical juncture.

"Further, and crucially, it seemed to me that the established difference of opinion between the treating clinicians and the father could come to assume acute significance at any point during the course of the night, and before the next available court hearing."

He said there was significant uncertainty over whether there was "a real possibility that (the girl) would die during the night" and added: "In such circumstances the difference of opinion needed resolution as a matter of urgency."

Doctors had told Mr Justice MacDonald that the youngster was no longer making "purposeful movement" and was she was unable to communicate.

They said she had deteriorated to the point where she required "constant" ventilation.

One doctor said "such invasive ventilation" was not in the girl's best interests and said the only benefit would be that her life would be "prolonged artificially" in an "irreversible neurological state".

The girl's parents disagreed and said she should get life support treatment. Her father had been "anxious" to ensure that "everything that could be done ... should be done". He had said doctors should help a child who was breathing and "fighting".

Mr Justice MacDonald said he had concluded that "further aggressive invasive treatment" was not in the girl's best interests.

The judge said a representative of the Children and Family Court Advisory and Support Service - which represents and supports children involved in litigation - had also been involved in the telephone hearing and acted as an "advocate to the court".

A former Liberal Democrat MP who campaigns for improvements in family justice had concerns.

"The difficulty for parents in these situations is that they don't have access to a second medical opinion independent of the NHS trust that proposes a particular course of action," said John Hemming, who is chairman of the campaign group, Families for Justice.

"In the end the judge is presented with only one medical opinion which is the opinion of the hospital."

He added: "Hence it is actually quite difficult for the judge to make a decision other than that which is asked for by the NHS Trust."

And he went on: "There should be a study into life and death cases of this nature to find out how often the courts refuse the application of the state agents."


From Belfast Telegraph