Patient, 34, dies after judge ruled he had right to refuse permanent stoma bag 

A man in his 30s who did not want to live with a stoma bag has died after a judge ruled he had the right to refuse life-saving treatment.

The man, 34, who had a history of bowel problems, was seriously ill and sedated in Barnsley hospital’s intensive care unit following major surgery.

Specialists said he had a 60% to 70% chance of surviving but would need a permanent stoma – a surgical opening on the abdomen though which urine or faeces can be diverted out of the body.

Mr Justice Hayden was told the man had made a written ‘advanced decision’, saying he would not want to live with a permanent stoma. 

The judge ruled earlier this month that the man could be allowed to die after considering evidence at a virtual hearing in the Court of Protection, where judges make decisions about people who lack the mental capacity to make decisions for themselves.

He said medics could lawfully stop providing nutrition and hydration by artificial means and move the man to a palliative care regime.

Lawyers representing the trust said life-support treatment has been withdrawn and the man has died. 

The man was in intensive care at Barnsley Hospital shortly before his death after he had a stoma operation

Bosses at Barnsley Hospital NHS Foundation Trust, who had responsibility for his care, had asked Mr Justice Hayden to decide what was in the man’s best interests.

They said a decision needed to be made because it would be some time before the man regained the capacity to make a decision for himself.

The man’s parents said his wishes should be respected. 

Campaign group Christian Concern had argued the judge’s ruling was flawed because it ignored the fact MSP agreed to have a stoma operation on May 27 – signalling an apparent change of mind. 

It is this operation that left him in intensive care at Barnsley Hospital. 

Andrea Williams, chief executive of Christian Concern, said: ‘We have a young man with a serious medical condition who appears to have changed his mind about not wanting to live with a stoma. 

However, Mr Justice Hayden seems to have disregarded this and decided what MSP wrote in February represented his ‘true’ wishes.’ 

Mr Justice Hayden said the man did not want to live with a stoma if it permanently limited his social or sex life. 

He wrote: ‘There is powerful evidence that as a young man in his thirties… he could never accept life [after such surgery].’ 

Mr Justice Hayden ruled earlier this month that the man could be allowed to die after considering evidence at a virtual hearing in the Court of Protection

He added that the case ‘revolves around MSP’s own expressed wishes’ and pointed to a document which MSP drew up in February saying he would refuse ‘the formation of a stoma… that is expected to be permanent’.

Mr Justice Hayden ruled that the man could not be identified until three months after his death.

He said the man had not wanted anyone but family members to know about his, earlier, stoma.

‘Having heard argument, including on behalf of the press, I consider that the anonymity of MSP should be protected for the remainder of his life and for a period of three months following his death,’ the judge had said, in his ruling.

‘In the particular circumstances of this case and bearing in mind the extent to which MSP wanted to conceal his stoma from the world, I consider this strikes the appropriate balance between the competing Article 10 (ECHR) and Article 8 rights which are engaged and in which both have parity.’

The man’s parents spoke to the judge, during the Court of Protection hearing, from their home, and told him that their son had lived with a temporary stoma once before, following surgery.

‘He hated it,’ the man’s mother told the judge. ‘He said: ‘How can I get a job? How can I get a woman?’

The man made it clear he did not want to live with a permanent stoma, which is a surgical hole in the stomach to which a colostomy bag is attached to collect digestive waste (file image)

‘We support what he wants.’

Mr Justice Hayden said many people live ‘perfectly full lives’ with a stoma but the man had delivered a ‘consistent’ message.

The judge said the man had endured a ‘decade of serious ill health’ and had a ‘desperately reduced’ quality of life.

‘He has made a practical, utilitarian calculation that life in these circumstances is not what he wants,’ the judge had said.

‘In a real sense this is not a case about choosing to die, it is about an adult’s capacity to shape and control the end of his life.’