Disabled activists fighting moves to legalise assisted suicide have warned that a court case that saw a hospital secure permission to withdraw fluids from a disabled 12-year-old girl it was treating proves that such deaths are becoming more acceptable.
The death of Nancy Wise secured widespread publicity after a series of media interviews given by her mother, Charlotte Fitzmaurice.
The court’s decision to allow Great Ormond Street Hospital for Children (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 has now told Disability News Service that she was terminally-ill and had been in extreme pain and distress, which was “impossible to successfully control because of her very complex condition”.
She died on 21 August, 14 days after the high court granted permission for GOSH to stop providing her with fluids.
A GOSH spokeswoman said: “Nancy had an incurable condition and without the court order, clinicians predicted her life expectancy to be weeks at best.”
But with Lord Falconer’s assisted dying bill due back in the House of Lords tomorrow (Friday), disabled campaigners against the legalisation of assisted suicide fear the Nancy Wise case shows that such deaths are becoming more acceptable.
They are particularly concerned that Nancy’s mother believes that her daughter’s death shows that hospitals and parents should be able to decide to end a child’s life without having to ask a court for permission.
Presenter, broadcaster and writer Mik Scarlet was himself a patient at GOSH throughout his childhood.
His parents also asked doctors to let him die, but in his case – in the 1960s – they told them they were “going to give him a chance” with some experimental surgery. Against the odds, he survived.
Scarlet said: “I can understand why parents might say they do not want their child to suffer any more, but to know that doctors are actually playing a role in fighting for a child to die…
“I think it says something deeply troubling if you end up with the medical profession starting to sit with the pro-death campaign.
“I want my doctors to fight to keep me alive come what may and I do not want them to start passing judgement on my quality of life, because I don’t think doctors are ever the right people to pass that judgement.”
He added: “Time and time again we hear that quality of life is connected to not being in pain.
“For many disabled people, being in pain is just part of life. We should be campaigning on the idea that pain can be coped with.”
He added: “It is easy to say someone is ‘terminal’, when what they really mean is that she is terminal if we stop working to keep her alive.”
Scarlet said the case was “solid proof of the slippery slope” that campaigners have warned would lead to more and more disabled people’s lives being threatened if assisted suicide was ever legalised.
He said: “A disabled child, who could not communicate her wishes, is exactly the type of person [we] are fighting to protect.
“We are not heartless sods wishing suffering on those at the end of their life, but we do fear that the truth about the way society views disability will eventually lead to the law being widened to include cases like this.
“This will lead to euthanasia of all children who may need extensive and possibly lifelong treatment and medical intervention, especially those who will be severely disabled.”
Disabled activist Dennis Queen, a leading member of the disabled-led organisation Not Dead Yet UK, said the Nancy Wise case was just as significant as the progress of Lord Falconer’s bill.
She said she wanted to see the court papers in the case, particularly as the hospital appeared to have changed its view of whether Nancy was terminally-ill.
She said: “I want to see who advocated for Nancy’s life and I want to see what the facts are.”
Writer and performer Sophie Partridge, another disabled campaigner, suggested that “with the climate as it is at the moment, these things go under the radar and it is somehow acceptable for them to happen”.
She said she did not believe Nancy would have been allowed to die if she had not been a disabled person with high support needs.
And disability activist John Cresswell-Plant said the court’s decision was “not the thin end of the wedge… the wedge has been driven in wide end first, and has the potential to create a dangerous and terrifying precedent”.
He said the case “may enable more issues like this to be decided in the same way that Nancy’s case was”.
He added: “To use another metaphor, the court has ‘driven a coach and horses’ through any protections disabled people had to maintain the right to life.
“If it had been a non-disabled child in pain, the issue would never have arisen because the child would’ve been a potential asset for the nation; the political and ruling classes have decided that disabled people in general are a liability.”
The Great Ormond Street spokeswoman said: “Many of the children we treat at Great Ormond Street have extremely complex medical conditions where decisions about the best course of care are very difficult to make.
“In all these cases, including Nancy’s, we try our very best to support families as much as possible and provide all the information they might need.
“In this way, we can help families come to an informed decision in the best interests of their child, in very difficult and often distressing circumstances.
“In Nancy’s case, her mother and extended family provided Nancy with an exceptionally high quality of care throughout her 12 years of life, and acted with remarkable grace and dignity in arriving at the very difficult decisions involved in Nancy’s care.”
6 November 2014