Child B: the truth about her last days

Everybody had an opinion about how to treat Jaymee Bowen as she battled against leukaemia. But as a new study reveals, nobody could agree. Jeremy Laurance reports

THE story of Jaymee Bowen, better known as Child B, is one of the most harrowing in the recent history of the NHS. When she came to public notice in early 1995, aged 10, she had spent half her life battling cancer. The disease had returned (as acute myeloid leukaemia) and her family and doctors faced an agonising choice: whether to keep her comfortable until she died or whether to persist with more aggressive treatment in the hope of a cure.

It is a question that sooner or later every cancer victim faces. In Jaymee's case, everyone had an opinion, but there were no clear answers, as the first detailed study of her tragic case, published today by the King's Fund, makes clear.

It is a story of a father driven by despair over his dying child, a health authority cleaving to its public responsibility. and eminent consultants at loggerheads over the best way forward. Above all it demonstrates that what was presented at the time as a row about NHS rationing was, in truth, nothing of the sort. It was about what sort of treatment was appropriate for a child staring death in the face. As Professor Albert Weale of Essex University says in the foreword: "If tragedy is the clash of right against right, here, quite simply, was a tragedy."

It was when Cambridge Health Authority, responsible for Jaymee's care, refused to pay for a second bone marrow transplant that her story made the headlines in March 1995.

Her father, David Bowen, a volatile and determined man, had decided she should be given the chance of life, however slim and whatever the human and financial cost. He committed himself to obtaining the treatment she needed, working night and day in libraries, telephoning experts around the world, cajoling and lying his way into their consulting rooms.

The result was that Jaymee's case became a cause celebre, portrayed as an example of NHS rationing at its worst in which callous bureaucrats were denying a young girl a chance of life.David Bowen went to court to compel the health authority to pay for further treatment. He lost, but the publicity generated by the case achieved the end he wanted. An anonymous donor agreed to pay the pounds 75,000 cost of further treatment, which began in March 1995 in a private London clinic.

Jaymee lived for a further year, longer than most consultants had given her. During that year she had further chemotherapy and an experimental treatment known as donor lymphocyte infusion. Her indomitable spirit carried her through and she appeared to think the pain and discomfort was worth it.

A Panorama programme shown in October 1996 made her an instant celebrity. Asked for her advice to other children in her position, she replied: "Never give up. Never give up until you are on the last little drop of life."

By March of the following year, however, she had apparently had enough. The reaction known as graft-versus-host disease that the paediatric oncologists had feared and which had until then been held in check settled in her lungs. She had difficulty breathing, it became painful to swallow and sometimes she was so short of breath she could hardly climb the stairs. Two months later, she died a harrowing death.

In this unique and sensitive study, the authors, Professor Chris Ham and Susan Pickard of the Health Services Management Centre at the University of Birmingham, were granted interviews by all the protagonists in the case, most importantly with the senior consultants, who have never spoken about it before. The most surprising aspect of the report is the profound disagreement among them and the hostility which they felt towards each other.

The paediatric cancer specialists who cared for Jaymee most of her life at Addenbrooke's and who were consulted for a second opinion at the Royal Marsden in London believed palliative care was the only option. It would allow her to enjoy what remained of her life, avoiding further suffering - and there was no guarantee, anyway, that more aggressive treatment would gain her extra time. Dr Valerie Broadbent of Addenbrooke's said that all her clinical experience confirmed that further intensive treatment in Jaymee's case would not be in the patient's best interests. She was concerned with what she called "good death and bad death." Dr Simon Meller of the Royal Marsden was unequivocal. "I won't go on doing treatments that I think are wrong for children or unkind to children."

The adult leukaemia specialists whom David Bowen consulted at Hammersmith Hospital and the private Portland Clinic took the view that extending Jaymee's life was worthwhile even if she could not be cured. They cited Mr Bowen's strong wish to do everything possible and Jaymee's courageous attitude to her illness. Professor John Goldman of the Hammersmith said: "If you say that just prolonging people's lives for six months is futile, then for practical purposes I'm out of business. We don't cure that many people with proper cancer. We do prolong their life."

Dr Peter Gravett, the consultant haematologist who treated Jaymee privately, said: "Paediatricians feel that if there is no protocol then there should be no treatment."

This clash of philosophy generated fierce animosity. The paediatricians accused the adult specialists of "clinical arrogance" and the adult specialists responded with charges of "empire building" by the paediatricians.

It was also a clash between state and private medicine. As one paediatrician put it: "Some specialists would feel that somebody is trying to tell them how they should or shouldn't practise medicine. It's very classical behaviour of famous specialists. They usually have a very large private practice and whatever rules we decide are appropriate in the NHS, they won't apply to private practice."

Each side clung to its own view and its right to disagree. As the report says, it reflects the individualistic values to which medicine has always subscribed. The report recommends that a limit be placed on the number of opinions that patients and health authorities are allowed to seek (the Patients Charter currently permits two) and that children should be given a greater say in how decisions are made.

Was it all worth it for Jaymee? The central issue in the case was the ancient medical conundrum of how to ensure that more good is done than harm. Even now, after her death, the specialists disagree on the benefits of her treatment. Professor Goldman said it had achieved its object of buying more time. Dr Broadbent maintained that she would almost certainly have enjoyed as much good quality life with palliative care, even though she might have died sooner.

Near the end, Jaymee was asked if she was prepared for death. In her reply she expressed her longing to be free of the body to which she had been shackled. "There is nothing to be scared of and hopefully it won't be painful. I don't want to die, but if I do and there is an afterlife I want to come back as a butterfly."

Every single day you buy is priceless

TWO years after Jaymee's death, her father David remains convinced he did the right thing for his daughter. He won her an extra year of life when she was, in his words, facing "imminent extinction."

"Every single day you buy in that situation is priceless. There is no other word for it," he said yesterday.

The extra year brought much happiness and the human cost, in terms of her own suffering, was not excessive, he says. "I have got a photo album full of happy memories. She thoroughly enjoyed every minute she had. She went to Disneyland and to Harrods and did all sorts of things she would never have done. Even when she was in hospital the chemotherapy didn't affect her that much. She was just that kind of person."

His chief complaint about the NHS is that because she was a child, the right to decide her own fate was removed from her and given to the paediatricians. When, by his own efforts, he established that there were other options - held out by the adult leukaemia specialists he consulted - there was no system for considering them. He wanted to get all the doctors and the health authority to sit down and thrash out the differences between them. Instead, all communications between him and the NHS managers who were denying his daughter treatment were by fax and phone, a point criticised in the King's Fund report.

"If they were going to rob her of the possibility of life they should at least have explained why," he said.

The end of his battle to save her has left him feeling empty, he says. "For such a long period my entire life was consumed with it 24 hours a day. Now I get up in the morning and feel I am not much use anymore."