Great Ormond Street Hospital was blown up today by a High Court judge for his role in the death of a nine-year-old girl in her care.
The hospital's ethics committee was beaten up because it chose to manage the girl's end-of-life care instead of treating her condition without first consulting her parents.
Her parents said the move triggered a "tsunami of medical consequences," which meant that her daughter "had to die unnecessarily with no medical treatment available."
The Great Ormond Street Hospital ethics committee decided to transfer a nine-year-old girl to palliative care without discussing the matter with her family. The young girl died two weeks ago
A high court judge today criticized the hospital for not consulting the girl's family
In a statement, they said, "Without our knowledge or involvement, the Trust's Ethics Committee decided that it should no longer be actively treated.
“The ethics committee's determination simply meant that our daughter was allowed to die. The decision was made behind closed doors and was based on a later inadequate medical diagnosis of our daughter, ”they added.
Ms. Justice Russell said members of the Great Ormond Street Hospital ethics committee in London decided that physicians should focus on palliative care for the nine-year-old girl to maximize her comfort and quality of life before death.
The lawyers then started litigation and asked the judge to decide that the girl should receive palliative care.
The judge said it was unfortunate that the teenager's parents were not involved in the ethics committee.
She asked for guidance on “patient / family participation” in such discussions.
Ms. Justice Russell raised concerns in a written decision released Friday after she recently made decisions about the girl's treatment at a hearing in the High Court family section.
She named Great Ormond Street, but said that neither the girl who died nor her family could be identified in media reports.
Lawyers representing hospital heads had argued that the judge's decision should not include Great Ormond Street.
However, the judge said lawyers had not provided convincing evidence that designating Great Ormond Street as a relevant NHS trust and treating the hospital was a "risk" for personnel.
The girl was diagnosed with a disorder that affected the functioning of her kidneys, and suffered from kidney disease, chronic lung disease, and bowel failure, the judge said.
Ms. Justice Russell, pictured, said that where the quality of life of a disabled child with complex medical needs is a key issue, parent involvement in the clinical ethics committee process is essential
Ms. Justice Russell said the girl's case was discussed by the Great Ormond Street Ethics Committee in May.
"… the consensus was that other invasive treatments, including kidney replacement therapy, were not in their best interest and that the focus should be on palliative care to maximize their comfort and quality of life before death," she said.
"… unfortunately it wasn't about (her parents)."
She added: "There should be guidelines for patient / family participation and a clear record of how and when they are informed of the arrangements to be made for an ethics committee and the outcome."
Ms. Justice Russell said that where the quality of life of a disabled child with complex medical needs is a key issue, parent involvement in the clinical ethics committee process is essential.
She continued: "I am not sure why it was not possible to involve the parents in the ethics committee in this case."
The girl's parents welcomed the judge's "criticism" and called for protective measures.
Ms. Justice Russell said the Great Ormond Street bosses originally asked her to decide that it was in the girl's best interest to only receive palliative care.
The girl's parents had initially spoken out against this request and did not want the treatment to be restricted.
However, Ms. Justice Russell said the issues had narrowed after the discussions.
She had finally made decisions in favor of the parents – about treatments that the girl should receive as part of palliative care.
Ms. Justice Russell concluded that if the condition worsened, the girl could be re-admitted to intensive care and given some form of non-invasive ventilation.
The girl's parents said trustworthy bosses had instituted legal proceedings two weeks after the decision of the ethics committee.
"It was only then that we saw for the first time what the ethics committee said," said her parents in a statement made after the verdict.
"Our beloved nine-year-old daughter died two weeks ago today," they said in a statement made after the verdict.
“The ethics committee's determination simply meant that our daughter was allowed to die.
"The decision was made behind closed doors and is based on a later inadequate medical diagnosis by our daughter."
They added: “As the judge rightly stated, neither the ethics committee nor our doctor's medical team were aware of our daughter's quality of life and continued to enjoy it. They hardly knew her. & # 39;
A spokeswoman for Great Ormond Street Hospital later said, “At Great Ormond Street Hospital, we care for children with some of the most complex and rare diseases in the country.
“Regardless of the child's prognosis, we believe that every patient is a unique and special child who deserves the highest standards of treatment and care.
“In some very rare cases, there are disagreements between the clinical teams and the family about what care would be in the best interest of the child. In this case, we work very hard with families to resolve the differences.
"As reported to the court, we were able to resolve most of the family differences during the trial, and we do not expect us to return to the court."
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