TIME: Almanac 1995

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<text id=93TT2145> <title> Aug. 30, 1993: The Ultimate Choice </title> <history> TIME--The Weekly Newsmagazine--1993 Aug. 30, 1993 Dave Letterman </history> <article> <source>Time Magazine</source> <hdr> MEDICINE, Page 43 The Ultimate Choice </hdr> <body> An operation to separate the Lakeberg twins was surely compassionate--but was it wise? By ANASTASIA TOUFEXIS--With reporting by David Bjerklie/New York, Leah Eskin/Chicago and Frederick Ungeheuer/Philadelphia At dawn last Friday, Reitha and Ken Lakeberg gathered quietly with family and friends in the intensive-care unit of Children's Hospital in Philadelphia. As tears began to well, the Lakebergs made plaster imprints of the tiny hands of their daughters Amy and Angela, then picked them up and hugged and kissed them. Born seven weeks ago, the girls were Siamese twins, joined breast to belly, with a fused liver and a shared heart. As they cuddled the girls, Reitha, 24, and Ken, 26, knew that they would not see Amy, "the ornery one," alive again. Her fingernails had been left bare while her sister's had been painted pink by nurses to help doctors easily distinguish the girls. For surgeons would soon try to save Angela by sacrificing Amy. Even Angela had only the slimmest chance--less than 1%--to survive for more than a few weeks. Still, as Ken had plaintively asked one doctor, "people win the lottery every week. Why can't we?" Before the babies were wheeled into the operating room at 8:05 a.m., Angela made a waving gesture in the air, inspiring her mother to say, "That's right, Angela, thumbs up." The painstaking task of separating the babies was expected to take all day, but after only 5 1/2 hours, the doctors reappeared, and the news was good. "Angela is stable, comfortable, and we hope that will continue to be the case," said Dr. James O'Neill Jr., the lead surgeon. At the same time, relatives were making funeral preparations for Amy. No one could know yet if the Lakebergs would ultimately beat the odds and win their painful personal lottery. But it was clear that the couple's ordeal had drawn the nation into a gripping human and medical drama--and set off a searing ethical debate. Does love demand that parents of a dying child seek any solution, no matter how long the odds of success? Or is it more loving, in some cases, to let nature take its course? Does duty demand that doctors always intervene, or should they set limits? And does it make sense for a society to spend hundreds of thousands of dollars on an almost certainly doomed effort while millions of Americans go begging for the basics of health care and while the government preaches the gospel of cost containment? Where do love, responsibility and justice lie? The Lakebergs' time of hard choices began just before Christmas. About 13 weeks into Reitha's pregnancy, the Wheatfield, Indiana, couple learned through an ultrasound test that she was carrying Siamese, or conjoined, twins. Such cases are rare; they happen when a fertilized egg splits incompletely during early cell division. About 40 such sets of twins--or 1 in 50,000 births--occur in the U.S. each year. Few of the pairs live long enough for separation to be considered. The Lakebergs' doctors had put the likelihood of one twin surviving at no more than 20% and suggested an abortion. At first, the couple reluctantly agreed. With a five-year-old daughter to care for already, the Lakebergs were financially strapped. Ken, a welder, had been out of work for a year, and the family had been forced to move after being evicted from a trailer home. So the day after Christmas, Reitha drove to an abortion clinic in Chicago. "She was real sad," says her sister Theresa Hubbell. "She didn't want it done, I could tell, but she figured the doctor told her to do it." The clinic, however, was unprepared to handle the unusual pregnancy and postponed the procedure. She never went back. Though the Lakebergs are Catholic, Reitha, a quiet wisp of a woman, calls her decision mostly personal: "In my heart, I couldn't get rid of my babies." On June 29 she gave birth by Caesarean section; Amy and Angela together weighed just over 9 lbs. Doctors soon discovered that even their earlier guarded prognosis had been overly optimistic. The infants' fused liver could be divided, but the twins had one heart. Even worse, it had six chambers instead of the normal four, with a hole in one chamber and blood from the lungs pumping into the wrong side. The doctors recommended to the Lakebergs that Amy and Angela be allowed to die. "We sort of pleaded with them to take the babies off the ventilator," says neonatologist Dr. Jonathan Muraskas at Loyola University Medical Center in suburban Chicago, who tended the twins from their birth and agonized for weeks before deciding that intervention was futile. "Let's feed them and keep them warm. Let's put them in God's hands, so to speak." Ken appeared at times to agree. But Reitha was unable or unwilling to accept such an end. Loyola doctors put the couple in touch with surgeons at Children's Hospital who had previously operated on 10 sets of conjoined twins. Early last week the babies were flown to Philadelphia in a specially equipped Lear jet. On Wednesday doctors told the Lakebergs they would try to separate the pair. Though surgeon O'Neill would say that "there is a reasonable chance of success," he admitted that "if there is long-term survival, it would be unique." In fact, no conjoined twin with such a heart had lived beyond three months of separation. When the operation finally began, a team of 18 doctors was on hand. First the surgeons divided the twins' liver. Then they began the daunting task of reconstructing the heart. Amy died about two-thirds of the way through the surgery. Mercifully, Reitha and Ken had been spared a Sophie's Choice of selecting which of their offspring would die. Doctors made the decision strictly on medical grounds--which twin had the stronger chance. Soon after the operation ended, Reitha and Ken visited their surviving daughter. "She looks good," Ken said afterward. "She's got her color. She opened her eyes just briefly, and then went back to sleep, of course. But we got to hold her hand and stroke her hair, and she looks good." No matter what the outcome, Amy and Angela Lakeberg have become poignant--and potent--symbols of one of the most troubling questions regarding health care: Is it morally and medically right to go to such extraordinary lengths when the prospects of success are so small and the financial costs so huge? In deciding to operate, the Philadelphia team primarily considered not the grim medical outlook but the Lakebergs' wishes. "We take the position that the parents have the right to choose for their children," says O'Neill. Nor were the doctors swayed by financial considerations. The bill for the twins' care, already well above $300,000, promises to soar much higher, and the Lakebergs have no private medical insurance. "If someone is going to ration care because of money," declares O'Neill, "it's not going to be us." As compassionate as that stance may be, it strikes many as an abdication of medical responsibility. Blinded by love, grief, even guilt, desperate families find comfort in holding fast to the flimsiest of hopes. "I can't live my life wondering if one of them, with that chance, would have lived," said Reitha before the operation. But doctors should be "moral agents," argues ethicist James Nelson of the Hastings Center in Briarcliff, New York. Parents shouldn't lose their freedom to choose, he says, but there are times when "physicians should just say, `Hey, look, this isn't good medical practice--we don't do this.'" Arthur Caplan, director of the University of Minnesota's Center for Biomedical Ethics, extends that view: "American society is going to have to accept the fact that there are odds that aren't worth pursuing. A slow, painful, miserable death is not better than a quick, peaceful death." At a time when U.S. medical costs are approaching $1 trillion a year, thinking about the price of saving a new life--or prolonging an elderly one--is no longer regarded as irrelevant or ugly. "There are kids with no tetanus shots, moms that have never been to the doctor or who have just given birth and don't know how to feed their babies, and no resources are pointing in those directions," says Caplan. The Clinton Administration is intent on redirecting at least some energy and money away from valiant, last-ditch measures, such as transplants and resuscitations, to save the few and toward basic health services, such as immunizations and blood pressure tests, to benefit the many. But this policy change runs against the national ethos. "Americans are a society of rescue rather than prevention," notes Dr. Alan Fleischman, director of neonatology at Montefiore Medical Center in New York City. "We are not people who really believe in community; we're a society that believes in the individual." Americans respond best not to people in the abstract but to those with names and faces, who smile from magazine covers and cry on television. This time the compassion flowed to the Lakebergs--Reitha, Ken, Amy and Angela. Once their personal plight was known, it became heartbreakingly difficult to say what should have been done. </body> </article> </text>