Parents' agony after Great Ormond Street Hospital decided to let their seriously ill daughter die without consulting them
Great Ormond Street Hospital has been blasted by a High Court judge over its role in the death of a nine-year-girl in their care.
The hospital’s ethics committee was slammed for not consulting her parents when they advised that the girl’s end of life care should be managed, rather than her condition treated.
Last night the hospital said the family were spoken to straight after the meeting to inform them of what was discussed.
But her parents said the committee meeting set in motion a ‘tsunami of medical consequences’ that meant their daughter was ‘left to die needlessly, bereft of available medical treatment’.
Great Ormond Street Hospital's ethics committee took a decision to move a nine-year-old girl onto palliative care without discussing the matter with her family. They young girl died two weeks ago
A High Court judge today criticised the hospital for failing to consult with the girl's family
In a statement they said: ‘Without either our knowledge or our involvement the Trust’s Ethics Committee determined that she should no longer be given active treatment.
‘The determination by the Ethics Committee meant simply that our daughter would be allowed to die. Its decision was made behind closed doors and based on what was subsequently shown to be a wholly inadequate medical diagnosis about our daughter,’ they added.
Ms Justice Russell said members of the ethics committee at Great Ormond Street Hospital, in London, decided that medics should focus on providing the nine-year-old girl with palliative care to maximise her comfort and quality of life prior to death.
Lawyers had subsequently begun litigation and asked the judge to rule that the girl should receive palliative care.
The judge said it was regrettable that the ethics committee process had not involved the youngster's parents.
She called for guidance on 'patient/family participation' in such discussions.
Ms Justice Russell has raised concern in a written ruling published on Friday after making decisions about the girl's treatment at a recent hearing in the Family Division of the High Court.
She has named Great Ormond Street but said neither the girl, who has now died, nor her family could be identified in media reports.
Lawyers representing hospital bosses had argued that Great Ormond Street should not be named in the judge's ruling.
But the judge said lawyers had not provided any compelling evidence that naming Great Ormond Street as the relevant NHS trust and treating hospital results in 'any risk' to staff.
The girl had been diagnosed with a disorder affecting the function of her kidneys and suffered from renal disease, chronic lung disease and intestinal failure, said the judge.
Ms Justice Russell, pictured, said where the quality of life of a disabled child with complex medical needs was a central issue, the involvement of parents in the clinical ethics committee process was essential
Ms Justice Russell said the girl's case had been discussed by Great Ormond Street's ethics committee in May.
'... the consensus reached was that further invasive treatments, including renal replacement therapy, were not in (her) best interests and that the focus should be on palliative care to maximise her comfort and quality of life prior to death,' she said.
'...regrettably it did not involve (her parents).'
She added: 'There should be guidance on patient/family participation and a clear protocol of how and when they are informed as to the arrangements being put in place for an ethics committee to meet along with being informed as to the outcome.'
Ms Justice Russell said where the quality of life of a disabled child with complex medical needs was a central issue, the involvement of parents in the clinical ethics committee process was essential.
She went on: 'I remain uncertain as to why it was not felt possible to involve the parents with the ethics committee in this case.'
The girl's parents welcomed the judge's 'criticisms' and called for safeguards to be put in place.
Ms Justice Russell said Great Ormond Street bosses had initially asked her to rule that it would be in the girl's best interests to only receive palliative care.
The girl's parents had initially opposed that application and had not wanted treatment to be limited.
But Ms Justice Russell said issues in dispute had narrowed after discussions.
She had eventually made rulings in favour of the parents - on treatments the girl should receive as part of a palliative care regime.
Ms Justice Russell concluded that the girl could re-admitted to an intensive unit, and receive a form of non-invasive ventilation, if her condition deteriorated.
The girl's parents said trust bosses had initiated court proceedings two weeks after the ethics committee decision.
'It was only at that point that we saw - for the first time - what the ethics committee had said,' her parents said, in a statement issued after the ruling.
'Two weeks ago today, our beloved nine-year-old daughter died,' they said, in a statement, issued after the ruling.
'The determination by the ethics committee meant simply that our daughter would be allowed to die.
'Its decision was made behind closed doors and based on what was subsequently shown to be a wholly inadequate medical diagnosis about our daughter.'
They added: 'As the judge has rightly observed, neither the ethics committee nor our doctor's medical team had any knowledge of the quality of life our daughter had, and continued to enjoy. They barely knew her.'
A spokesperson for Great Ormond Street Hospital said: 'We would like to offer our heartfelt condolences to the family and our thoughts are with them at this very difficult time.
'As an organisation and as individuals, GOSH and its staff always have the best interest of patients at the heart of all decision making and we understand how devastated the family must be at losing their beloved child.
'This was a really unusual and complex case involving a very poorly child who had only been able to spend 16 days at home in the last seven years, as stated in court. But at the centre of any decision making about their care was not whether they should or should not receive treatment, but about what was in their best interest.
'As was reported in court, we were able to resolve the majority of points of difference with the family during the proceedings.
'We also recognise the family’s frustration at not being invited to the Ethics Committee meeting which was convened urgently due to the child’s rapidly changing clinical condition.
'We are sorry they were not invited, they should have been. Immediately after the meeting there was dialogue with the family about what was discussed.
'It is also important to note that the Ethics Committee does not have any clinical decision-making capabilities, it is purely an advisory body to help guide clinicians through complex issues.'
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