A Lancaster man with a degenerative brain condition has started a legal fight to prevent doctors withdrawing
food and fluid as he deteriorates.
Les Burke fears he will starve to death unable to communicate
Les Burke, 44, from Lancaster, says under existing General Medical Council guidelines doctors can withdraw feeding tubes from him.
He fears lying incapacitated in hospital and unable to tell doctors that he wants to live.
On Thursday he seeks a judicial review of the guidelines in the High Court.
Mr Burke has cerebellar ataxia which eventually will leave him bedridden, unable to speak but with his mind in tact.
GMC guidelines published in 2002 allow doctors to withdraw tube feeding or hydration from a patient who may not be dying but for whom the treatment is "too burdensome."
Mr Burke sees this as a nightmarish prospect.
"That's what scares me, it really does scare me," he told BBC News Online.
"It takes two or three weeks to die if food or fluid is withdrawn. My mind will be aware of what is happening."
"For me patient consent is of the utmost importance."
A founder member of the Disablement Information Support Centre in Lancaster, Mr Burke's campaign began six months ago when discussing the government's draft Mental Incapacity Bill with a colleague.
The bill looks set to enshrine the Bland judgement which said artificial feeding and hydration of the Hillsborough coma victim Tony Bland was "treatment" which could be withdrawn.
But Mr Burke says everyone has a right to food and drink.
A GMC spokeswoman told BBC News Online the GMC welcomed the "opportunity for further clarification of the law."
She said one issue raised is whether doctors should be compelled to "provide treatment which they believe to be of no benefit to a patient or not in a patient's best interests."