A High Court judge will decide this week whether doctors should stop feeding a brain damaged man and allow him to die.
The man is a former drummer from Sheffield who needs 24-hour hospital care. He has lost most of his brain function as a result of chronic alcoholism and epilepsy.
Mr Justice Hayden began hearing the landmark case in the Court of Protection at the Royal Courts of Justice yesterday.
This is only the second time the court has had to decide whether to withdraw all nutrition from someone in a minimally conscious state in order to let them die.
The previous case was heard by Mr Justice Baker in 2011. He was asked by the family of a 52-year-old woman in a minimally conscious state if he could rule that she should no longer be fed through a tube. He refused to, arguing that "the law regards the preservation of life as a fundamental ruling".
The 52-year-old man at the heart of this latest case told friends before he lost the ability to communicate that he found hospitals “a living hell” and did not want to be treated. He also said he would rather die young than live with his disability.
The musician, referred to in court as TH, is now unable to swallow, move or communicate and is not expected to recover any cognitive ability.
Sheffield Teaching Hospitals NHS Foundation Trust initially applied to the court to decide on a new feeding tube and whether to resuscitate in the event of a cardiac arrest. As the case developed in court yesterday, however, it was extended to include a decision on whether to withdraw food altogether and allow him to die.
The musician was first admitted to hospital after falling unconscious in the street in 2012. He was diagnosed with ataxia which impacted on his ability to play the drums and caused him to start drinking more heavily.
Paul Spencer, the barrister representing the NHS trust, said TH had drunk excessively “as a result of the loss of the passion of his life, drumming. Once he lost the ability to play the drums, alcohol became a significant feature of his life”.
Despite the impact on his health, TH insisted on continuing his drinking habit, telling friends: “My brain is fucked, I'm fucked and I want to drink because it's the only thing I enjoy.”
At an earlier stage in his condition he refused any professional care at home and was cared for by a former partner, who bathed and fed him. The woman, who was his girlfriend for 20 years and continued to care for him after they split up, told the court that TH “never liked hospitals” and had “pleaded” with her not to let him end up in one.
She said that he “drank alcohol all his life to help him cope with life”.
His hatred of hospitals intensified after his mother was transferred to one ahead of her death several years ago. He was so opposed to them that during one recent period of his treatment he managed to escape his ward as soon as he was able to. His former partner told the court: “I don't know how he did it because he was on a zimmer frame, but he did it.”
By February this year his condition was so bad that he was under 24-hour care in hospital. He refused medication on a number of occasions before he lost all ability to communicate.
“That first week he said 'get me out of here'," his former partner recalled. She said she thought he hated the experience, adding: “His eyes tell me that he's frightened”.
Now the only discernible words that friends and doctors can hear him say is “fuck” and the name of an old school friend.
He has suffered several epileptic fits which have worsened his condition and doctors believe he could die within a matter of weeks and will probably not live longer than a year.
Friends are keen that he be released from hospital and allowed to die at home but his treating doctor said this would probably not be practical.
In written testimony to the court, a friend who first met TH when he was a drummer in the eighties, said: “Over the years he's made it evidently clear he has an intense hate of hospitals... I believe with all of my body and soul that TH would find the situation he's in a living hell and if we care anything for him we'll leave him in peace.”
The nursing care necessary to keep the musician comfortable includes being bathed, fed, and having incontinence pads changed. His former partner said this would be particularly distressing for him as he was private and "devastated at the thought of strangers bathing him".
Commenting on the impact of this, Mr Justice Hayden said: “We're talking about human dignity, which is a crucial component of all treatment. If he is a man who everyone agrees would consider his current situation as his own worst version of hell... that doesn't entirely seem to respect his dignity.”
He added: “I don't for a moment question the professional commitment but I do question the dignity.”
Agreeing with this point, his former partner said: “It's hard now seeing him in nappies. The thought of him going long-term into a nursing home would be just not in his best wishes.”
While stressing that TH did not want to be treated in hospital she said the nursing care he received in Sheffield had been “absolutely fantastic”.
Speaking of his desire not to be kept alive in hospital, his former partner said: “He said he wanted to die young. He said he would rather carry on drinking and smoking cannabis and shorten his life than live with the disability.”
Another friend of 40 years, who was a guitar player in the first band that TH was a drummer in, told the court: "His quality of life at the moment on a scale of one to 10 is really zero. He can't eat or drink. He's not there.”
He said that TH had tried to kill himself five years ago and that "he didn't want to live”. He also said that he felt he saw "a wince of contempt” in TH's eyes when he visited him in hospital.
The case continues on Thursday and the judge has made it clear he wants to make a decision by the end of the week.