Cutting Edge

June 17, 1994|By ELLEN GOODMAN

Boston -- On Monday, Angela Lakeberg was buried in a grave next to her sister Amy. The pair had been born 11 months ago in what was romantically and medically described as an embrace. Now they were laid to rest side by side.

By some random and rare accident of nature, they came into the world joined at the heart. By the most sophisticated medical technology available, they went out of the world in two coffins.

Ten months ago, when these so-called Siamese twins were brought to the Philadelphia operating room where one would die in an attempt to save the other, the headlines screamed the moral question: Angela or Amy? But only a story here and there noted the end of Angela and Amy.

It is tempting to try and wrest some good from this tragedy, to grasp the straw of a happy ending. It's tempting to try and find comfort in the notion that the doctors did ''everything they could.'' They did that.

But in any public eulogy for these girls it is fair to ask when and whether doctors should do ''everything they could.'' In the midst of a debate over health care and costs, it's fair to ask about ethical choices and their prices.

When Reitha and Kenneth Lakeberg were told that she was carrying conjoined twins, abortion was offered as a merciful choice. When the twins were born at Loyola University Hospital in Chicago, the doctors decided, after much soul-searching, not to operate. One child would die on the operating table -- killed by surgery. The odds that the other would survive for any length of time, were, as a doctor explained to the parents, the same as ''walking into a bowling alley and bowling three 300 games.''

In the way of the world, the Lakebergs found another hospital, another team of doctors who were willing to take the risk. They performed an operation that was in every sense of the word on the cutting edge of pediatric surgery.

Perhaps we shouldn't question the judgment of those surgeons today. It's easy, after the fact, after the death, to second-guess the mixture of hope and heroics that went into the decision to go for it.

The motives of the parents -- or should I say, the father -- are more unsettling. Kenneth Lakeberg, described as violent and a drug abuser, seemed to value the babies for the attention and the cash they could bring. He bought drugs with donations sent to pay for his daughter's medical care. He spent most of Angela's life in jail on a battery charge. On the day of her death, he was in court being arraigned for auto theft.

But, in the way of American medicine, it was the doctors and the parents alone who were given the right to choose for Angela and Amy . . . and for the rest of us. They made the decision to spare no effort. And to spare no expense.

Money is the uncomfortable bottom line of this ethical life story. It cost more than $1.3 million to keep the red-haired, blue-eyed Angela alive in an intensive-care unit, fed by tubes, mostly attached to a respirator, for 10 months. The bill itself is being wrangled over by three states, two hospitals, one Medicaid program. But it will come back to the public in one form or another.

We are properly reluctant to put a price tag on a life. If Angela had lived, would she be worth it? Is it only because she died that the money was ''wasted?'' But along the treacherous path to health-care reform we're going to have to factor in costs with caring.

While the second of the Lakeberg twins was buried, Congress was in the middle of grappling with health care, trying to figure out the minimum to which every American is entitled. But we also have to ask: What is the maximum?

What are the costs, the benefits, the odds of success for a 70-year-old man who wants a liver transplant, for a 45-year-old breast-cancer patient who wants a bone-marrow transplant? For Siamese twins joined at the heart?

In fact, the tale of Angela and Amy should have been one of the easier of the hard choices coming down this road. The moral discomfort that entailed sacrificing one twin to the other was towering, the odds of success were dismally low. For once, the cry for mercy and the call for cost containment were in harmony. And yet, these Siamese twins were brought to the cutting edge. If we cannot make the relatively easy choices, how will we make the hard ones? How will we pay for them?

I am afraid that my eulogy for these girls is not very comforting. If we learned something important, it won't be found in the medical texts. It's another lesson in how hard it is to say enough is enough. Only now may two girls who shared one heart rest in peace.

Ellen Goodman is a syndicated columnist.

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