John Roughan: Serenade me when you turn off the life-support

My worst nightmare is to be buried alive. Not in the accidental sense of being trapped in a mineshaft or something, which would be bad enough, but my real nightmare is to be buried deliberately, with due ceremony, when I'm not really dead.

Crazy, isn't it? Couldn't happen. That's what I tell the subconscious. But there is a daylight nightmare along the same lines that I find harder to dispel. I'm lying paralysed, living on drips. I've lost all faculties of memory and communication. I can see and hear, though, enough to see sunlight at the window and well-chosen words on a page if someone would just come and turn it for me.

Sometimes I imagine the sight has gone, too. There's no response to the light they shine in my eyes. I can only hear, and when I hear music there is nothing else I need. I luxuriate in life, living it more intensely for the sliver of it left.

It is while I'm lying there, soaring with Puccini or Mark Knopfler, that the doctors come. They turn off the music and I hear them discuss my quality of life.

"We need to be sensible," they say gently to my family, who are sensible. I suppose I died to them sometime after I ceased to recognise them. They look down at me with the decision in their eyes and they have no way of knowing that I'm screaming in here.

Crazy? Probably. If I had even that much enjoyment of life left I dare say doctors would know it and wouldn't pull the plug. But you never know. You hear many people say they wouldn't want to be kept alive in that state, so how are doctors to know?

The lesson we've been told to learn from the terrible tussle over Terri Schiavo in the United States this week is the importance of making a "living will" while you still have your faculties. Well, I wonder.

A living will, I suspect, would be about as reliable as an organ donation when it came to the point. The last time I wrote about organ donation I was outraged that doctors let families override a person's stated willingness to donate, and I poured scorn on intensive care doctors for the spiritual hocum they used to explain their deference to families.

Then I read a proper investigation of the organ donation issue by Jenny Chamberlain in North and South. Chamberlain cut through the spiritual cant and explained exactly what doctors didn't want to say out loud. When the loved one is wheeled away for organs to be donated the person is not dead. The body is still pink and breathing. It dies on the donation table.

No wonder the family at the bedside has to be given the decision. Similarly, whatever the right-to-die people say, they are asking somebody else to make an awful call.

My living will, for what it is worth, is that I want every last gasp of life given to me. If I can do no more than think, I want to go on. If I can see and hear as well, I could be content. But that is easy to say in full health, as easy as it is to say you don't want to be kept semi-alive. None of us knows until we get there.

Before her cardiac surgery my aunt had as much zest for life as anyone I knew. But when she woke up in the intensive care ward at Green Lane, she looked hard at me for a moment and shut her eyes again. She would not open them again for weeks. She undoubtedly knew at that moment what the nurses only suspected - that the surgery had caused a stroke. There was no response from her limbs on one side.

The surgeon had warned her something like that could happen. She had taken the chance on life or death. She didn't want a half-life.

She lay in a semi-coma for so long nobody believed me that she had briefly opened her eyes. She did not open them again, even when family came from as far as Australia to see her.

For weeks, with feeding tubes and breathing assistance, she let us know she could hear and would answer questions by tapping the fingers of her good hand. We even got her writing blind with a ballpoint and became adept at deciphering the scrawl. But she did not open her eyes until the day the hospital discussed with us arrangements for her long-term care and her sister told her they planned to put a feeding tube directly into her stomach.

Her improvement that day was remarkable, but in retrospect it was only resignation to the fact that the medical profession was determined to keep her alive. She lived on for several more years needing constant care, quietly depressed and defying most attempts to help her.

I simply could not understand her. Her mind was as sharp and intelligent as it had ever been. She could see to read books and her computer screen, with one hand to turn pages and use a keyboard and mouse. She had constant visitors to her sunny room filled with her pictures and plants, and music she loved at the touch of a remote.

I sometimes said I reckoned I could be content with that much and she said I didn't understand.

I didn't, still don't. Nothing is more deeply unsettling than a person's failure to affirm life, and the person probably knows it. The hardest thing about their predicament may be that in simply wishing to relinquish life they know they are letting the side down. Even people dying normally sometimes hang on until someone lets them know it is all right to go.

There was something crazily life-affirming about the wrangle in the US this week. After 15 years in a vegetative coma the woman is not going to make any sort of recovery, yet the family clings to hope and claims to see flickers of life. But the hard questions of life and death in individual cases cannot be settled by legislation.

In hospitals, where these sorts of decisions have to be made every day of the week, they can only be made by doctors and family members. And I don't imagine mine would, or should, let me linger in my paralysed, incommunicative condition with my sunshine and a concerto.

I just hope that when they take out the tubes they turn the music back on and let me go naturally.

* John Roughan is a Herald assistant editor