CHILDREN / Should their lives be in their own hands?: For a child ravaged by illness, the trauma of yet another operation may be too much to inflict. Angela Neustatter asks whether the young should be allowed to decide to die

SAMANTHA IRWIN was born with a bile duct obstruction and had to have major surgery when she was five weeks old. Throughout the following five years she had more surgery, a great deal of medication and two liver transplants. At the age of six, faced with a third transplant and a 3 to 5 per cent chance of the new organ being accepted, Samantha told

her parents: 'I'm really fed up with this. I

want to go home.'

Chris and Malcolm Irwin looked at the daughter they had seen change, after the last gruelling operation, from a happy-go-lucky girl to a pale, frail child who could no longer smile. They felt sure she knew what she was saying, and that they should respect her right to die rather than gamble on the slim chance of another operation being successful.

The pain of losing Samantha less than two years ago is ever-present for her parents and her sister, three-year-old Kirsty. Yet they remain philosophical. 'We'd always discussed everything with Samantha from when she was very young,' Chris says. 'We tried to help her understand why an operation seemed the right thing, and what would happen to her. She went through such a lot in her short life, with two failed transplants and all the pain and anguish. The doctor asked us why we wouldn't try once more with the last operation. I told him we were listening to Sam. He accepted that.'

The Irwins felt they were choosing quality of life for their dying daughter. They took her out of hospital and went on a trip to America. It was the thing Samantha most wanted to do. 'We had a wonderful time all together and I really feel we were able to keep out thoughts of what might happen afterwards,' Chris says. 'Sam was so happy and she seemed to improve with her happiness, so I suppose somewhere we were hoping for a miracle.'

Four days after they arrived home, Samantha deteriorated badly. It was clear she was going. 'She couldn't sleep and I realised she was very afraid of dying, so we called the doctor to come and up her dose of morphine so she wouldn't be afraid. It meant she probably knew little of where she was or what was happening, but that seemed better than letting her suffer. I just sat with her then and held her hand and watched her die.'

Though Chris and her husband will never stop feeling sad that Samantha has gone, they do not regret what they did. They are convinced that letting their daughter choose to die was the right decision.

Not everyone shares this view. When Chris spoke on the BBC Radio 4 Moral Maze programme there was vehement criticism of her for believing it reasonable to allow so young a child to make a decision which, however small the chance of success, was a life and death choice. A senior psychiatrist at a London hospital, who chooses not to be named, condemns such practice as 'colluding with self-

destructive behaviour on the part of the child'.

It is an emotive ethical issue and one which, however privately addressed by individual families, is considered important enough for those who are less personally involved to offer their views vociferously. In the much publicised case of Laura Davies, who has just had her second major internal organ transplant in the United States, the parents have received hate mail and been attacked for subjecting their child to this treatment rather than allowing her to die quietly and comfortably.

Opinion is divided about how long it is right to go on treating a child. Among the factors that have to be weighed up are whether another operation seems too great a trauma to inflict; how high the chance of success is; and whether precious resources are being used when the odds do not justify it. But these calculations do not address the moral issue of whether it is right to allow children to die.

It is a question to which there is no simple answer, says sociologist Priscilla Alderson, whose book Children's Consent to Surgery (Open University Press pounds 12.99) will be published in November. Her conclusion is based on interviews she conducted with 120 children aged 8 to 15 who were going for orthopaedic operations which were life-changing rather than life-threatening. She also interviewed 70 health professionals.

'The central question,' she argues, 'is whether we consider children competent to understand the treatment offered to them, and to be involved in discussions around decision- making. If we do believe this, it is a logical follow-through that they be listened to in matters of life and death.'

The Department of Health holds that a 'competent' patient has a fundamental right to grant or withhold consent to treatment, and that refusal must be respected. Alderson believes the children she spoke to were competent in this way. 'My view of children's wisdom changed profoundly,' she says. 'I realised they were very capable of understanding their illnesses at a far younger age than I imagined, and of coming to terms with their treatment and the risks and after-effects they might suffer. Their carers believed children as young as three or four could understand. On average they had had four operations each, and had matured a great deal through the process.'

Another factor they had in common was the attitude of their parents. All shared the view that children should be told as much as possible about their illness and treatment. June Gibson, whose eight-year-old son Tim has a serious heart disease which will probably involve a transplant, believes it is vital to talk. It is a good way of judging at each stage how much a child can take on.

'So far, we have told Tim what was going to happen before his surgery,' she says, 'and we have encouraged him to talk about his feelings. But we have not allowed him a final say - though that has not arisen, because he has understood the reason for his treatment and been very positive about wanting it and wanting to get better.'

His parents have discussed with Tim the fact that a transplant may be necessary. He hasn't protested at that, but they are aware that they will one day have to let him know, honestly, about the fact that he could die having an operation - or come out with brain damage. 'We feel he is too young at present to make a life and death decision,' June says, 'but if that was what he wanted when he was older, we would have to listen very carefully.'

In her book, Priscilla Alderson cites cases where children have chosen not to have operations to deal with a deformity, even though their parents wanted it corrected. Others have been so upset and unsure that their operations have been delayed. Nevertheless, Alderson argues that openness is best. 'Children who are properly informed and involved in their treatment very rarely refuse it.'

Eleven-year-old Dorothy is a case in point. Her innocence, logic and trust in adult decisions are typical of children in her position. 'My parents wouldn't make me have this operation if I didn't want it,' she says, 'but if I was going to die they would. Then, I would agree. It would be the only sensible thing to do.'

Dorothy Judd, a child psychotherapist at the Middlesex Hospital, London, believes children like Dorothy should be trusted with this kind of decision-making: 'It is perfectly understandable that parents may feel it easier to take charge and 'protect' the child. But children can be so much more frightened by lack of knowledge and their fearful fantasies. When they know their parents want them to have treatment to help them get better - and when they know they are loved - they almost always agree, even though they know it will be unpleasant and they are fearful. Children have a capacity to understand what must be, and to cope. So often this isn't recognised.'

Elizabeth Fradd, director of paediatric nursing at the Queens Medical Centre, Nottingham, believes children should have the same rights as adults in being helped to understand their treatment fully. But what if a child refuses treatment which stands a good chance of saving life?

'In that case,' Fradd argues, 'the child should be overruled, because it is in his or her best interests to be saved. That applies even when the child has had the treatment before and knows how unpleasant it is. But if we're talking about a child who has a long-term chronic illness and decides they do not want to go on, who has clearly grasped that they are choosing to die, I would say they should have the same right as adults.'

There might be public support for the idea of a teenager making this choice, but isn't it too difficult a concept for a very young child to grasp? Fradd, like a growing number of health carers working closely with children, does not think so. She believes that a young child who has been close to death has a wisdom and maturity untypical of its age.

'I see children wanting to give up and parents wanting to go on, and I believe we have to ask in whose interests we are carrying on. I feel it is valuable if we can help parents to listen to the child. Letting a child go when he or she is ready is the greatest love they can give.'

Though the law theoretically defends the patient's right to refuse medical treatment, doctors who respect a child's withholding of consent can still find themselves in court. According to Jonathan Montgomery, an ethics specialist in the department of law at Southampton University, 'Judges tend to promise they will respect the child's word, but then find ways to bend that.' He cites as an example a 15-year-old Jehovah's Witness with leukaemia who had argued lucidly against wanting a blood transfusion, but was judged legally incompetent and ordered to be protected against himself by having a transfusion.

'In the courts,' Montgomery says, 'medical judgement tends to be paramount. The child's wishes are treated as just one factor which can be overruled. That may seem right to people who believe children are incompetent - or the property of parents or the state - but it is not right if you believe children are competent.'

Chris Irwin believes her daughter Samantha would have suffered to an unreasonable degree if the state had forced her to have further treatment. In a society geared to saving lives at any cost, where the death taboo is strong, the idea of trusting a child's judgement is difficult to accept. But should the decision lie in the hands of dispassionate outsiders?-

I felt we should listen to Victor

A mother recalls the dilemma of letting her son choose death

Victor was nearly four when his leukaemia was diagnosed. He had a month of heavy chemotherapy in hospital and then radiotherapy to his head. But it was the intensified treatment that followed which made him so sick. He vomited and had diarrhoea for a month and lost a stone in weight. It was touch and go, but then he started to get better. He was kept on tablets, infusions and an intravenous drug for two years and it seemed that he really was better. But eight months later he had a relapse. I could see him losing weight and going grey in the face.

The hospital took him in and, with drugs, got him stable. He went through the first month of chemotherapy and then he just began to let us know he couldn't go through it all again. The hospital then suggested a bone marrow transplant but we had difficulty finding someone compatible; we began to feel more and more strongly that it was wrong to be putting him through all this when he was saying he did not want the treatment. The doctors were giving us a small chance of success if we went on treating him, but I just suddenly felt we should listen to Victor.

He didn't stop all treatment. He had the odd bit of chemotherapy but we stopped looking for a marrow donor. I began to focus on simply giving him a good time each day. I made the quality of his life the focus of everything we did and it was a wonderful time. We went to the zoo, we had treasure hunts, outings in the garden and as long as he was able to walk he loved to go out at night with a torch and check if the flowers were still there. When he got too sick to walk, I'd push the buggy. There were times when he would lie and not move and he just wanted me to lie with him. His life went on longer than people were expecting, and I am quite sure that was because he was allowed to choose this way.

There were people who felt I should get him to have treatment - and it is possible he would have lived on. After his death I was much criticised for having let him die. But if he had spent the last part of his life suffering and then died, he'd never have known that special, lovely time at the end. I am certain it was the right choice for Victor.