'How could I switch off his life support machine?'

When her brother Malcolm fell gravely ill, doctors told Christine Aziz that he was brain dead. Yet his body was warm, he was breathing - and the decision she faced seemed impossibly cruel
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When I received a call to say Malcolm was in hospital with a stomach ulcer, I was strangely uneasy. I drove from London to the hospital in Norwich, my stomach in knots all the way. I was taken to meet the consultant treating Malcolm. He told me that he had operated on the ulcer and Malcolm appeared to recover. But then he began to bleed internally. He lost so much blood that his brain was starved of oxygen for several minutes. My brother, said the consultant, was in a "vegetative state" and I could ask for life-supporting treatment to be withdrawn.

When I received a call to say Malcolm was in hospital with a stomach ulcer, I was strangely uneasy. I drove from London to the hospital in Norwich, my stomach in knots all the way. I was taken to meet the consultant treating Malcolm. He told me that he had operated on the ulcer and Malcolm appeared to recover. But then he began to bleed internally. He lost so much blood that his brain was starved of oxygen for several minutes. My brother, said the consultant, was in a "vegetative state" and I could ask for life-supporting treatment to be withdrawn.

"Are you asking me to think about ending my brother's life now?" I asked incredulously. Ignoring me, he said that after seeing Malcolm, I might want to instruct the doctors to stop treating him; after all, there was no hope of a recovery. At best he would be able to breathe for himself, but little more.

My brother was not like other brothers. As a child he had been lively and fun to play with but had a tendency to withdraw into his own imaginative world. Our father's death in our early teens brought us closer together. It was while he was at art school that he began to change. His rebellious, anti-social behaviour was considered heroic by his peers, but it soon became clear that it could be self-destructive. He withdrew into a world of drugs and only turned up when he was distressed or needed money. Later he was diagnosed paranoid schizophrenic and lived in a state of terror. I mourned the loss of the brother I had known, but grew to the love this other person. Vulnerable and often aggressive, he still retained his independent spirit and dry sense of humour. For 15 years he had lived on and off with Francine, who also had a history of mental illness.

I was taken to the room where Malcolm lay. Nothing prepared me for what I saw. He lay on his back, his head to one side, and his bright blue eyes staring sightless ahead of him. He had had a tracheotomy because he could not breathe for himself. A thin spindly arm, white as milk, lay outside the sheet. He was being fed intravenously through a line in the back of his hand; there was a catheter and another line from his stomach. A wave of anger and pity engulfed me.

I bent over his face and kissed him and smoothed his forehead. He felt surprisingly warm - and alive. What did brain dead mean exactly? What was dead about him when he was still warm and there was hope? I swallowed hard and whispered into his ear. I told him, as I always did when I saw him, that I loved him, that he wasn't alone and that I wasn't going to leave. I had read somewhere that hearing is the last sense to go, so I stroked his head and told him the family news, but he stared into darkness I could not see.

Francine arrived. She had been with him since he had been taken into hospital. She looked drawn and tired and sat beside the bed barely speaking. She kept writing little notes and placing them around the room. Later when I read them I discovered they were prayers for Malcolm's recovery.

Through the day I massaged him and stroked his head, singing and chatting to him until the light faded and the nurse told us to leave. Malcolm had shut his eyes as if in sleep. If he was sleeping, I mused, he must be awake when they are open and by implication aware of what was going on around him. I could not sleep. I did not like the thought of him being alone, even if he did seem unaware of anyone's presence. But I had a strong sense that somewhere deep inside him, he knew that people were caring for him.

The next morning I walked numbly through Norwich, recalling the times I had driven round searching for Malcolm, who liked to forage through the litter bins. If the weather was good, we'd sit on Cromer beach and I would catch glimpses of the brother I once knew: funny, laconic and gentle.

I bought a Bob Dylan tape and played him his favourite tracks, but his face remained unchanged. Sometimes his breathing was laboured, and on the second day, he began to shake uncontrollably. The nurse says he had a temperature, probably caused by an infection. He became still and his eyes seemed to lock on to my gaze as if registering me - then they slid away without any acknowledgement.

The next eight days were marked by the changing shifts of the nurses, and Francine and I developed a routine. We brought sweet-smelling oils to massage him with, and held flannels soaked in lavender water over his temples. We told him things we knew would make him laugh. I kept expecting him to sit up and say, "Hello Chris, what am I doing here?" But he was silent, except when his throat filled up with fluid and he started choking.

Every day I felt under pressure to make a decision for Malcolm.

Desperate to speak to anyone, I called the Norwich branch of Headway, an organisation for people with head injuries. The next day Josie, one of its members, took me for coffee at Norwich Cathedral. She brought common sense to my heightened emotions. Her son had been in a coma for a very long time following a road accident and is now almost fully recovered, but every case, she said, is different. "Get a second opinion on your brother," she advised. "Don't be pressured into making a decision by the doctors. Make sure you are as informed as possible and bear in mind the age and physical condition of your brother, and what sort of life he could expect."

I hunted down a neurologist. He said Malcolm was likely to remain in a permanent vegetative state. "But people come back after years of being in a coma," I argued. "These cases are rare," he said, "and usually occur in healthy patients. Your brother was already very ill when this happened."

Francine was waiting for me outside Malcolm's room. I told her what the neurologist had told me. She shook her head in disbelief. "No, no, God will make Malcolm better." She could not bear to think of a life without him.

I sat and told Malcolm everything the neurologist and Josie had said to me. Neither of us was religious, and if being dependent on others for life was horrific to me, then I knew it was for him too. Life is sacred, but not at any price. I asked Malcolm what I should do. Deep in my heart I knew what he would say... but did I have the right to say it for him? "Please make the decision for me, Malc," I begged.

That night while I slept, an image of Malcolm flashed before me. He was lying face up on a pillow and was smiling at me. That morning I instructed the doctors to hold back medical intervention in the case of a heart attack, stroke or further bleeding. But I wished him to have medication that made him comfortable. It was, I insisted, too early to decide to withdraw artificial nutrition and hydration, and I was not going to be pushed into making a decision. This was my brother we were talking about. I was his protector, not his executioner.

The nurses told me to go home to get some rest. I didn't want to leave him or Francine but knew that I was no longer thinking clearly as I was so exhausted. I kissed Malcolm goodbye. His skin smelled strange and he was hot.

The following evening, as I prepared to return to Norwich, I received a call from the hospital; Malcolm's condition had deteriorated suddenly and he had died alone at 10.45pm. He had found his own peace at last and taken the decision out of my hands.

Four years later I still find it hard to come to terms with Malcolm's death. I wish I had known at the time what I know now: by suggesting that Malcolm's medical treatment be withdrawn before I'd even seen Malcolm, the consultant had pushed me into a grey area that challenges the meaning of life, death and love.

The British Medical Association stresses the importance of consultation between the treatment team and relatives. In my brother's case I do not feel this was carried out. I was never consulted. From the first moment I met the consultant, he made it clear that it was inevitable that I would have to make a decision, sooner rather than later, whether or not my brother lived.

Information was not forthcoming. I'd had to discover the implications of my brother's condition myself. I was not advised of Malcolm's rights. In fact, in this situation, neither I nor my brother appeared to have any rights at all - medical staff could override any decision I would have made regarding my brother's right to live, although in contentious cases, the British Medical Association advised doctors to seek the authority of the courts.

My brother's death has taught me the importance of a Living Will. It makes clear what a patient's wishes are in such circumstances, and doctors are legally obliged to follow them. It prevents loved ones having to deal alone with a living death.

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