Mother’s joy as son, 29, with severe learning disabilities wins right to ‘life-sustaining’ kidney treatment after doctors wanted to end it
The mother of a 29-year-old man with autism and ‘end-stage’ kidney disease has won a specialist court battle to get her son life-saving dialysis treatment.
Camilla Tooke, 57, from Norwich, heard as doctors told the judge that her son, Jordan Tooke, would need to be sedated to get the necessary treatment because of his severe learning disabilities and that this would not be in his best interest.
However without undergoing dialysis three times a week Mr Tooke would likely die within months.
Mrs Tooke said: ‘Going through dialysis three times a week is burdensome – but at least he will have a life.’
Mr Justice Hayden ruled in favour of Mr Tooke’s mother at the Court of Protection in London, where judges analyse issues relating to people who lack the capacity to make decisions for themselves.
Jordan Tooke, 29, won a specialist court battle to get life saving dialysis treatment after doctors argued that this would not be in his best interest
Mr Justice Hayden described the case as ‘very difficult and challenging’ and a ‘delicately balanced ethical dilemma’.
In the ruling, he said: ‘This case is truly about life-sustaining treatment.
‘We are really considering matters of life and death.’
But the judge decided he was ‘certain’ trying dialysis was in Mr Tooke’s best interests.
He added: ‘I think he is entitled to the opportunity that it presents.’
Judges normally rule that patients at the centre of Court of Protection cases should not be named in media reports in order to protect their privacy.
But Mr Tooke’s mother wanted him to be named and Mr Justice Hayden agreed, saying publicity may help to find a kidney donor.
Mrs Tooke said the family has the result it wanted.
‘We are overjoyed,’ she said. ‘It has been a long fight. But getting this outcome – we are absolutely overjoyed.’
Mr Tooke, who has autism and ‘end-stage’ kidney disease, will need to be sedated three times a week to get dialysis treatment, but as his mother said: ‘At least he will have a life’
Specialists at the Norfolk and Norwich University Hospitals NHS Foundation Trust, the Cambridge University Hospitals NHS Foundation Trust and the Norfolk Community Health and Care NHS Trust are involved in Mr Tooke’s care and treatment.
Bosses at the three authorities launched litigation and asked Mr Justice Hayden to make decisions about what moves were in Mr Tooke’s best interests.
Barrister Katie Gollop KC, who represented the three authorities, told Mr Justice Hayden Mr Tooke’s ‘renal function’ had deteriorated ‘to the extent’ that a decision as to whether it was his best interests to ‘start haemodialysis’ could not wait.
‘It is … a heartbreaking case and one which is ethically very difficult,’ she said.
‘And it is after a great deal of soul-searching and anxious thought that (specialists have) come to the view that it is not in his best interests to be provided with haemodialysis under sedation.’
She added: ‘In coming to that view they have not lost sight of the fact that if he is not dialysed Jordan is likely to die of end-stage renal failure within 12 months. They have also kept Jordan at the centre of their thinking.’
Specialists told the judge they were prepared to try if he thought dialysis was in Mr Tooke’s best interests.
Lawyer Liz Davis at Irwin Mitchell, which is representing Mrs Tooke, said after the ruling: ‘This is a really emotive case which once again brings the issue of provision of medical treatment to autistic people and people with learning disabilities into the spotlight.
‘Understandably, all (Mrs Tooke) wants is what any parent would – to be able to provide the best opportunities for their child.’
She said Mr Tooke’s family tried to reach an agreement with hospital bosses and described the issue as ‘incredibly important and time-critical’.
‘Without haemodialysis, it’s expected that Jordan will die in only a few months,’ she added.
‘Therefore, the court has been asked to make a judgment as to what’s in his best interests. The family believe that haemodialysis and searching for a kidney donor is in Jordan’s best interests.’
Mrs Tooke said she wanted to thank lawyers for their efforts, adding: ‘I want to say thank you to Liz Davis at Irwin Mitchell, Sarah Coleman at Mencap, Ben McCormack and Victoria Butler Cole for all their help and support.’
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