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| Allow Huntington's disease sufferer to die, judge rules | Allow Huntington's disease sufferer to die, judge rules |
| (35 minutes later) | |
| A man in his 30s who is in the advanced stages of Huntington’s disease and repeatedly pulls out a feeding tube attached to his stomach should be allowed to die, a judge has ruled. | A man in his 30s who is in the advanced stages of Huntington’s disease and repeatedly pulls out a feeding tube attached to his stomach should be allowed to die, a judge has ruled. |
| The man had removed the tube about 120 times, Mr Justice Hayden was told during the hearing at the court of protection in London. The man’s mother and an aunt told the judge they believed he “wants to go”. | The man had removed the tube about 120 times, Mr Justice Hayden was told during the hearing at the court of protection in London. The man’s mother and an aunt told the judge they believed he “wants to go”. |
| A consultant neurologist said it would not be right – and futile – for medics to force the feeding tube on the man. | A consultant neurologist said it would not be right – and futile – for medics to force the feeding tube on the man. |
| Hayden concluded that the tube should not be reinserted, even though this would hasten the man’s death. | Hayden concluded that the tube should not be reinserted, even though this would hasten the man’s death. |
| The judge heard evidence from specialists, a nurse, and relatives at a public hearing in the specialist court – which considers issues relating to sick and vulnerable people who lack the mental capacity to make decisions – in London on Friday. | The judge heard evidence from specialists, a nurse, and relatives at a public hearing in the specialist court – which considers issues relating to sick and vulnerable people who lack the mental capacity to make decisions – in London on Friday. |
| He said the man, whose father had died of Huntington’s disease, could not be identified. But he said bosses at Royal Liverpool and Broadgreen University hospitals NHS Trust had responsibility for the man’s care and had asked for a ruling on what treatment would be in his best interests. | He said the man, whose father had died of Huntington’s disease, could not be identified. But he said bosses at Royal Liverpool and Broadgreen University hospitals NHS Trust had responsibility for the man’s care and had asked for a ruling on what treatment would be in his best interests. |
| Related: A cruel inheritance | Related: A cruel inheritance |
| Huntington’s disease is a hereditary disorder of the central nervous system. The condition becomes progressively worse over time and can affect movement, cognition and behaviour. There is no cure and its progress cannot be reversed or slowed. | Huntington’s disease is a hereditary disorder of the central nervous system. The condition becomes progressively worse over time and can affect movement, cognition and behaviour. There is no cure and its progress cannot be reversed or slowed. |
| Symptoms of Huntington’s were first seen when the man was in his teens, the judge heard. | Symptoms of Huntington’s were first seen when the man was in his teens, the judge heard. |
| A nurse closely involved in the man’s care told the court the quality of his life had deteriorated rapidly in recent years. The man no longer got out of bed, had lost the ability to speak and could not eat normally. | A nurse closely involved in the man’s care told the court the quality of his life had deteriorated rapidly in recent years. The man no longer got out of bed, had lost the ability to speak and could not eat normally. |
| Medics had tried a variety of types of feeding tube but the man repeatedly removed them, the judge heard. | Medics had tried a variety of types of feeding tube but the man repeatedly removed them, the judge heard. |
| The man’s mother was too distressed to give evidence but his aunt told the court: “Mum thinks he wants to ...” Hayden finished her sentence by saying “go”. The aunt nodded and added: “It’s a dreadful disease.” | The man’s mother was too distressed to give evidence but his aunt told the court: “Mum thinks he wants to ...” Hayden finished her sentence by saying “go”. The aunt nodded and added: “It’s a dreadful disease.” |
| The neurologist said the man experienced pleasure and probably pain. He told the judge: “Every time a tube is inserted [the man] pulls it out.” He said a feeding tube should not be forced on him. “I don’t see any circumstances where that would be the right course of action – even if it leads to his death,” he said. “There seems to be a futility in reinserting the tube. Unless he is restrained permanently there will be a 121st (time) and a 122nd etc.” | The neurologist said the man experienced pleasure and probably pain. He told the judge: “Every time a tube is inserted [the man] pulls it out.” He said a feeding tube should not be forced on him. “I don’t see any circumstances where that would be the right course of action – even if it leads to his death,” he said. “There seems to be a futility in reinserting the tube. Unless he is restrained permanently there will be a 121st (time) and a 122nd etc.” |
| He added: “There is no doubt this behaviour pattern will continue.” | He added: “There is no doubt this behaviour pattern will continue.” |
| Hayden said the man had enjoyed many interests and his “personality leapt” from court papers. The man was a passionate supporter of Manchester United – his aunt told how he used to regularly visit Old Trafford. A doctor told the court the man still smiled on hearing United’s name, and that a recent mention of Everton had “produced a frown”. | Hayden said the man had enjoyed many interests and his “personality leapt” from court papers. The man was a passionate supporter of Manchester United – his aunt told how he used to regularly visit Old Trafford. A doctor told the court the man still smiled on hearing United’s name, and that a recent mention of Everton had “produced a frown”. |
| Hayden said re-inserting a feeding tube would involve restraining the man - and might mean putting mittens on him. He said that would be disrespectful and “compromise” the man’s dignity. | |
| The judge said he had come to the conclusion that a feeding tube should not be re-inserted even though such a move would hasten the man’s death. | |
| “There is a strong instinct throughout the medical profession, and far more broadly, to preserve life wherever possible,” said Mr Justice Hayden. But that is not a value that stands alone and in splendid isolation.” | |
| He added: “It is to be considered against a whole raft of other important issues - respect for the dignity and autonomy of the individual and respect for their wishes.” |