Great Ormond Street Hospital for Children (GOSH) secured permission from the high court in August to withdraw fluids from Nancy Wise – after a request from her mother – and she died two weeks later.
But Disability News Service has confirmed that there was no legal advocate fighting in the court hearing for Nancy’s right not to be killed.
Instead the Children and Family Court Advisory and Support Service (Cafcass) was merely asked to have a member of staff on standby in case a guardian was needed by the court.
A Cafcass spokeswoman said this was “common practice in withdrawal of treatment cases”, and added: “In such cases it is then for the court then to decide whether the child needs to be separately represented.
“In this case Cafcass was not appointed as a guardian and as such there was no formal involvement of Cafcass.”
GOSH has also defended its decision not to inform the local coroner of Nancy’s death.
A hospital spokeswoman said: “In cases where we already have a court order stating it is lawful for treatment to be withdrawn, it would not be referred to the coroner because the cause of death is already known.”
The senior coroner, Mary Hassell, whose area covers GOSH, has refused to comment on the case.
But disabled activist Dennis Queen, herself a parent of three disabled children, said: “I am horrified that in any legal case where a child’s life is in the balance there would be no representation for the child and nobody advocating for their interests and what they want.
“It appears Nancy’s killing was decided in a back room meeting and nobody was there advocating for her individual rights.”
She added: “The problem is even worse than I thought, if Cafcass being kept out isn’t unusual in cases where hospitals kill by withdrawal of treatment.
“I would like to know why that happens and if it is even lawful. Surely, if it is not a failure of the legal process, then our legal process itself is in breach of multiple regulations, conventions and acts which protect the rights of children specifically and people generally.”
The death of Nancy Wise secured widespread publicity after a series of media interviews given by her mother, Charlotte Fitzmaurice, in which she tried to justify her decision to ask the hospital to end her daughter’s life.
The court’s decision to allow GOSH to stop providing Nancy with fluids caused outrage among many disabled activists after it was reported that she had been breathing independently, was not on life-support, and was not terminally-ill.
Nancy had been born with meningitis and septicaemia, which left her with multiple impairments and high support needs, but her condition deteriorated after a routine operation two years ago to remove kidney stones left her with an infection.
GOSH originally appeared to accept that Nancy had not been terminally-ill but later told DNS that she had been terminally-ill and in extreme pain and distress, which was “impossible to successfully control because of her very complex condition”.
She died on 21 August, a fortnight after the high court granted permission for GOSH to stop providing her with fluids.
It is believed that the kidney stones operation that led to Nancy’s condition deteriorating in 2012 was carried out at GOSH, but the hospital is refusing to confirm this.
Nancy’s mother has told journalists that her daughter’s death shows that hospitals and parents should be able to decide to end a child’s life without even having to ask a court for permission.
20 November 2014