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Who Pays for Twins’ Dramatic Operation?

Times Staff Writers

It was a bold rescue effort, offering tiny conjoined twin sisters, only 10 months old, hope for a normal life. Eighty doctors and nurses worked in a 22-hour surgery to separate Regina and Renata Salinas Fierros, fused from the lower chest to the pelvis, locked in an awkward embrace.

The successful surgery at Childrens Hospital Los Angeles last month made national headlines, and reporters kept a virtually round-the-clock presence.

But for all of the publicity the case has received, hospital and state officials have remained tight-lipped about one key aspect of the twins’ care: the cost, at least a portion of which will be paid by taxpayers.

Cost, however, is a growing concern in American medicine, and as prices rise, a debate is raging over where dollars should flow.

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Experts say cases like the twins’ highlight the lengths to which the system sometimes goes to rescue individuals in dramatic and emotionally compelling situations, even as those with chronic or more mundane conditions often struggle to afford care.

In that context, many ethicists and economists say, it is worth asking some uncomfortable questions about single, expensive cases.

Dr. Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania School of Medicine, put the matter bluntly: “Is that the best use of scarce dollars?” he asked after hearing the twins’ case described.

He acknowledged, as did several colleagues, that most Americans would consider the very question “morally untouchable.”

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To parents and caregivers, such procedures often are perceived as priceless -- worth doing at any cost. But they do come at a price, even if it is not made public.

Judging from other separations of conjoined twins, the Salinas Fierros’ surgery alone could approach $1 million or more. Months, perhaps years, of aftercare could push the bill much higher.

None of the ethicists and economists consulted by The Times argued that the girls, specifically, should not have been separated. But several said this case and others underscored some of the system’s unspoken priorities.

“Our medical culture is not to take into account the common good, but the needs of this particular patient who needs to be saved,” said Stephen G. Post, a bioethics professor at Case Western Reserve University School of Medicine in Cleveland.

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“As soon as you get to an individual case, human emotions take over. Rationality takes a back seat,” Post said. “If it’s your child” and the cost of care is astronomical, “you don’t care, because it’s your child. In the end, people advocate passionately and effectively for their nearest and dearest.”

Others defended such expenditures on humanitarian grounds.

“My feeling is these are very exceptional cases,” said Norman Daniels, an ethics professor at the Harvard School of Public Health, “and any system as rich as ours should be able to swallow these.”

“To work in an uncompassionate system would be quite horrible,” said Nancy Dubler, director of the bioethics division at the Montefiore Medical Center in New York City.

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Separating conjoined twins has created considerable controversy in the past, at least in the medical field.

In an article in the Hastings Center Report, a bioethics journal, about one Massachusetts case in 1999, Dr. Peter Ratiu and bioethicist Peter Singer questioned the “allocation of scarce public healthcare resources” on a $500,000 operation, noting the money could pay for 77 elderly couples’ medication for a year, as well as treatment of 25 cases of tuberculosis in the United States or 2,500 in Haiti.

Robert J. Wells, a pediatrician, blasted the pair for proposing a system in which it would be “the duty of individuals to die because society ... has decided they are not worthy enough to justify the use of additional resources,” according to a letter he wrote to the Hastings Center Report in 2001.

Ratiu and Singer wrote in response, “The first step toward the solution must be, however, the open discussion of the problem, however unpopular this might be.”

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Instances of conjoined twins are rare -- the condition in the Salinas Fierros case, known as ischiopagus tetrapus, occurs once in 2.5 million births -- but the expenditure of large sums on so-called heroic treatment is not unusual in American medicine. Some of the most costly cases involve the very young -- premature infants, for instance -- and very old.

No one involved with the Salinas Fierros case would specify or even speculate on its costs, primarily citing patient confidentiality.

“We’re a private nonprofit hospital. We don’t discuss funding. There are privacy issues involved,” said Ken Wildes, a spokesman for Childrens Hospital Los Angeles, which shared the cost of the procedure with the government-funded Medi-Cal program.

But published accounts indicate that the estimated cost of a 2004 operation to separate twins conjoined between the breastbone and navel at Children’s National Medical Center in Washington, D.C., was $750,000 to $1 million. And the estimated tab for dividing Guatemalan twins who were conjoined at the head at UCLA three years ago was $2 million -- an amount paid by the hospital and private donors.

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Regina and Renata Salinas Fierros became eligible for Medi-Cal, the government health insurance program for the poor, when they were born at Los Angeles County-USC Medical Center last August.

They are U.S. citizens by birth and, according to state officials, met income requirements for the program.

Their parents, Sonia Fierros and Federico Salinas, are Mexican nationals who came to the United States on tourist visas last year, intending to stay just 15 days for a visit with relatives. The couple said they had their visas extended after Fierros was hospitalized for a urinary tract infection and learned that she was carrying conjoined twins.

“We knew she was pregnant, we just didn’t know they were joined. When we found out, everything changed,” said Federico Salinas, 36, a part-time restaurant worker from Juarez, before the surgery.

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“We thought, here, they would be able to get better medical care,” said Sonia Fierros, 23.

The couple declined through a hospital spokesperson to talk about costs.

Some ethicists said the twins’ particular circumstances raise another wrinkle in the discussion.

“We have a huge investment of resources going to children who only accidentally became Americans,” Caplan said.

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But Daniels said a mother who discovers that she is carrying conjoined twins in the U.S. has no less of a right to care than does a foreigner who gets into a car accident here.

Some experts said the case was worth pondering for its larger implications rather than its specific circumstances.

“It’s a stupid system that makes it easier to get a very sophisticated operation than it does to get life-saving ordinary care,” said Mary Ann Baily, associate for ethics and health policy at the Hastings Center, a nonprofit ethics center in Garrison, N.Y.

“But why pick on these people?” she added.

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Broadly speaking, the system tends to favor people with exotic conditions over those who have more common illnesses, health experts and ethicists said.

Some noted that while routine ear and eye exams and dental care aren’t guaranteed for all children, for instance, the system might easily fund a rare million-dollar procedure. That sum could enable the state to insure more than 800 children for a year, according to figures provided by the California HealthCare Foundation.

The twins’ surgery comes as U.S. emergency rooms are overburdened, government reimbursements are shrinking and 46 million Americans remain uninsured, with some seeking treatment only when they are desperate.

But even in the face of galloping healthcare costs, Americans resist the idea of rationing healthcare.

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“We spend open-endedly, especially in a crisis, and then figure out how to pay for it later,” said George Annas, chairman of the department of health law, bioethics and human rights at Boston University School of Public Health.

Not all societies share this attitude. Amish community elders just east of Cleveland, for instance, sometimes decline to pay for care if it is deemed too costly, Post said.

Similarly, though U.S. hospitals often invest huge resources on severely underweight premature babies, some in European countries are less likely to try to save them, knowing that the baby may not survive or that the child may be severely impaired for life.

Even so, Annas and others suspect the American public wouldn’t stand for refusing surgery for conjoined twins like the Salinas Fierros girls.

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“In a sense, everyone’s playing the system that we have: The parents are playing the system, and the hospitals are too, and the doctors,” Annas said, referring to the publicity that hospitals receive.

“Nonetheless,” he said, “we all want the separation, and [say] money is no object, even though it is.”

At Childrens, doctors have deliberately avoided consideration of the costs.

“We try not to think about how much it costs because I don’t want anyone on the team to be influenced by those considerations,” said Dr. Henri R. Ford, chief of pediatric surgery. “We want to focus on treating those kids like they are the children or grandchildren of President Bush.”

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While the twins’ surgery was probably not necessary for them to live, doctors said their development and quality of life would have been severely impaired without it.

“It is likely they would have needed future surgeries if they had stayed together because of the position of their bodies and the potential for skin breakdown, limbs becoming frozen in certain positions, things like that, that would have made even moving them around impossible,” said Dr. James E. Stein, the pediatric surgeon who led the operation.

There is no way of knowing whether these treatments would have cost more than separating the twins in the first place.

Two weeks after their surgery, the girls remain in the pediatric intensive care unit in serious condition, with stable vital signs. The cost of treating them will continue to mount. While the girls’ father said he hopes to raise his children -- the twins and two other children -- in Mexico, he expects his family to stay in the U.S. for several years because of the twins’ condition.

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Officials at Childrens make no apologies.

“When we know we have the best chance for these kids, we know we have the services, we know we have the people -- they’ve done it successfully before -- how could we possibly say we are not going to do this?” Wildes said. “These children needed our help and we gave them that help. To a certain extent that’s all that should matter, if we’re human beings.”


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