Out of America: Whose teenage life is it anyway?

Rupert Cornwell
Tuesday 23 August 1994 23:02

MIAMI - Last weekend, the brief life of Benito 'Benny' Agrelo came to its appointed end at his home in the Miami suburb of Coral Springs. Benny was just 15, but in truth it was a small miracle he had lived that long.

He had been born with an enlarged liver and spleen, and his doctors did not expect him to survive. At eight years, he received a liver transplant. But anti-rejection drugs could not prevent the organ's failure five years later. In December 1992, Benny underwent a second transplant operation, and was prescribed a more sophisticated anti-rejection drug, but with even more unpleasant side-effects.

This wretched existence would be continuing today, had not suffering made Benny wise far beyond his years. For a fortnight or so last June his predicament became a cause celebre. It captured one of those ethical dilemmas that plague a world in which medical science has far outpaced the ability of society and the law to come to terms with the consequences of what that science can do.

Does a mere 15-year-old have the right to refuse medical treatment keeping him alive - because that treatment makes a life, in any case unlikely to last very long, simply not worth living?

When old people die there is little argument. Richard Nixon, the former president, and Jacqueline Kennedy Onassis were both praised for having drawn up 'living wills' stipulating they did not want the wonders of modern technology to prolong their lives artificially if they became terminally ill. After his stroke last April, Nixon was allowed to slip gently away. When she discovered her cancer was terminal, Onassis asked to be sent home. There she died, surrounded by her family.

So, too, in the end did Benny, just as he wanted it. But not before a judge had to overrule a state that thought he was too young to understand his own best interests.

After that second transplant, Benny was given a new anti-rejection treatment, an experimental drug called FK506. But the side- effects were fiendish: splitting headaches, sleeplessness and constant pain. In October 1993 he decided the trade-off was not worth it and, not without much initial resistance from his family, stopped taking the drug. Until this May he lived what he would later describe as 'the best months of my life', free of all side-effects. Then, inevitably, liver failure began. Benny began to lose weight; his eyes and skin yellowed.

On 8 June, Florida's Department of Health and Rehabilitative Services obtained a court detention order. An ambulance accompanied by five police cars arrived at Benny's house. Despite the protests of his family, he was forcibly strapped to a stretcher and taken to a Miami hospital.

But still Benny refused to be treated, adamant that a slim prospect of ultimate recovery could not compensate for the pain he would certainly suffer. Even with the drugs, he would probably need a third liver transplant and even then his chances of reaching 21 were less than 50 per cent. Three days later, having talked for several hours with Benny, a state judge decided he was perfectly capable of making up his own mind and overturned the detention order.

So Benny went home. Given the celebrity of the case, he was badgered into a few television appearances. He conducted them with grace and dignity. 'I don't want to die,' he insisted, 'but I'm tired of living in pain.'

Benny's tale, though, involves more than just the mental competence of an adolescent. Organ transplants are much sought after. At any given moment, 1,000 Americans are said to be awaiting a replacement liver, and donors for children are especially hard to find. Did Benny have the moral right to refuse to hold on to a gift that might have saved someone else, readier than he to put up with the pain?

But Benny's wish was granted. He spent his last few weeks peacefully, increasingly weak but not in pain. Towards the end his eyes became so frail that his room was kept in semi-darkness. After slipping into a final coma, he died at 5am last Saturday. They buried him yesterday in Fort Lauderdale. Not a happy ending, to be sure, but in Benny's judgement and probably of most other people, the best of those on offer.

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