Leslie Burke has a degenerative brain disease which will one day leave him unable to move or speak.
He's worried that doctors might decide his condition is so severe, that they'll stop artificial feeding and allow him to die.
But Mr Burke insists he doesn't want his life cut short.
He cannot walk. The degenerative brain disorder, Cerebellar Ataxia, has deprived him of that. But he can still talk. And before the disease robs him of that he's determined make sure no one else will decide for him what medical treatment he should receive - or be refused.
"The only person who knows whether to live or die is the person themselves, not for anyone else to make that decision"
Leslie Burke
Right now Leslie's quality of life is not in dispute. He has a job helping other disabled people, enjoys an active social life and he loves music.
But he knows things will get much worse and he's worried that it will be a doctor and not him who might decide to end his life by withdrawing artificial feeding once he can no longer communicate his own wishes.
”My mind will be as alert as ever. So I'm frightened of hearing doctors discussing whether I live or die. If food and water is withdrawn it can take 2 - 3 weeks to die. I'm very conscious of that. It’s very frightening.”
No one knows how many patients die because artificial feeding has been withdrawn. No records are kept and doctors don't like to talk about it.
But even when death is not imminent, doctors can choose to end a patients life this way by following GMC guidelines :
”Circumstances may arise where you judge that a patient's condition is so severe and the prognosis so poor that providing artificial nutrition or hydration may cause suffering or be too burdensome in relation to the possible benefits”.
Leslie Burke worries these won't protect him
Leslie has certainly made his wishes very clear.
While other patients may choose to refuse treatment at the end of their lives, he worries that even if he makes a living will he has far less guarantee of his desires being respected.
Doctors cannot ignore instruction from patients who refuse treatment, but no one can demand treatment, which makes Leslie's case more difficult.
The case of Hillsborough victim Tony Bland now means that doctors have to go to court to stop feeding patients in a so-called Persistent Vegetative State.
Doctors do not, however, have to seek a court order to withdraw treatment from patients who can't eat or speak because they've suffered a stroke, have throat cancer or severe dementia.
A course of action some may see as a benign way to end a painful life, others think is nothing short of cruel
Even if they are not able to say what they are feeling, they may well experience pain and shortness of breath.
And we don't deny them painkillers, we don't deny them oxygen. Now we understand that the may well be experiencing thirst and hunger but we don't offer them food and water.
It's certainly not how Leslie Burke wants to die. And he's hoping to force doctors to go to court before they allow him, or any other patient, to die this way.
"I don't think it is a natural way to die. And i don't think it is a dignified way to die".
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