In a Feb. 23 article about organ transplants, the name of R. Alta Charo, a lawyer and medical ethicist at the University of Wisconsin at Madison, was misspelled. (Published 2/24/03)
A teenage girl who underwent a second heart-lung transplant after doctors bungled the first one by giving her mismatched organs died yesterday from complications of her surgeries, officials said.
Jesica Santillan, 17, was pronounced dead at Duke University Hospital in Durham, N.C., at 1:25 p.m. after she suffered brain damage following the second operation, and repeated tests failed to find blood flow to her brain or any brain activity, officials said.
The teenager's death immediately sparked a confrontation between the hospital and the teenager's parents, who are deeply religious. Santillan's parents had demanded a second opinion before their daughter was taken off life support, a request hospital officials first offered and then withdrew, according to Kurt Dixon, the family's lawyer.
"The family was very distraught," Dixon said. "The family does not want to remove Jesica from life support. As you might expect, Jesica's family . . . [is] devastated by this tragic turn of events."
Hospital officials did not release details about the family's complaints, but a spokesperson later said the teenager was removed from the respirator at 5 p.m. without a second opinion, and the family "did not protest."
"All of us at Duke University Hospital are deeply saddened by this," the hospital's chief executive officer, William Fulkerson, said in a statement. "We want Jesica's family and supporters to know that we share their loss and their grief. We very much regret these tragic circumstances."
Legal and medical ethics experts said that a patient who is declared brain dead is deemed legally dead in every state, and hospitals have the legal power to withdraw life support without a family's consent.
"You never want to be in a position when you're offering someone choices when it comes to removing someone from life support," said Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania. "Things have gotten so out of control at Duke. This is the worst ending to a horrible sequence of events."
After Santillan was declared dead at 1:25 p.m., life support was continued throughout the afternoon so family and friends could say good-bye, according to Duke's chronology. Medications for the heart were discontinued at 5 p.m., and her heart rate began to slow. Her heart stopped at 5:07 p.m., and ventilator support was discontinued at 5:10 p.m.
Aside from the human tragedy, the case has refocused attention on the problem of medical errors and the allocation of scarce organs for transplantation. Since the error became public, experts have criticized Duke for failing to have adequate safeguards to prevent such an egregious error, but noted that such deficiencies remain common in American medicine.
At the same time, some experts have questioned whether Santillan was given preferential treatment, especially when she received a second set of organs even though her chances of survival were low. "I have a lot of questions about this case," Caplan said. "How did the organs come out of the national system mismatched? How did she get the second set of organs? Who else was on the waiting list for the second set of organs that got passed over?"
Organ procurement officials have denied that Santillan was given special treatment, and Fulkerson said the hospital had changed its procedures to guarantee that doctors confirm that donated organs match recipients in the future.
Santillan's parents smuggled the family into the United States from Mexico three years ago in hopes of getting medical care for their daughter, who was born with a fatal heart condition. They settled near Duke because of its reputation for medical care.
Mack Mahoney, a local developer, heard about Santillan's deteriorating condition and started a foundation to raise money for her $500,000 operation. After Mahoney and his foundation finally raised enough money, and after waiting three years for a donor, Santillan underwent a transplant Feb. 7.
Duke officials said the lead surgeon, James Jaggers, failed to confirm that the organs matched Santillan's blood type. Santillan had type O blood; the organs were type A.
Several groups are investigating the error, including the United Network for Organ Sharing (UNOS) of Richmond, which coordinates organ allocation nationwide.
After the hospital publicly disclosed the error earlier last week, the case became the focus of international attention. Another set of organs with the right blood type and size was quickly found, and Santillan underwent a second operation Thursday. Duke officials said they had three doctors independently confirm that the organs matched this time.
But the teenager's body had been weakened by being on life-support machines between the two operations. Her brain began swelling and bleeding almost immediately after the four-hour surgery.
In a telephone interview yesterday, Mahoney said he was distraught by the girl's fate. "I've done everything within my power to help that child. I'm devastated. I just really need to get my life back together and go through my grieving process," he said. "I'm very heart-saddened."
The family, too, was distraught, Mahoney said. "They're not holding up very well. They just lost their daughter," Mahoney said. "They're a couple of very tired parents now with a dead child."
Mahoney blamed Duke officials for failing to make their mistake public soon enough. "They tried to cover up and stalled too long. The hospital didn't want to fess up to it. And when they finally did, it was too late," he said.
Duke officials have denied any attempt to conceal the mistake, saying they notified the family immediately. Yesterday, Jaggers expressed regret that Santillan did not benefit from the rare heart-lung transplant.
He said the process of matching organs to recipients is complex: "Unfortunately, in this case human errors were made during the process. As Jesica's surgeon, I am ultimately responsible for the team and for this error. I personally told the Santillan family about the errors that were made and then tried to do everything medically possible to treat Jesica and try to save her life. . . . We all join the family in their sense of devastation."
When patients on life support die, hospitals sometimes bring in a second physician to confirm a diagnosis of brain death, if for no other reason than to reassure family members, said R. Alto Charo, a lawyer and medical ethicist at the University of Wisconsin in Madison. And hospitals sometimes keep brain-dead patients on life support for a few hours, even days in some cases, to help families accept their loved one's death, she said. But doctors have the legal right to declare someone brain dead and remove him or her from life support.
"You don't want to be inhumane about it, and if you need a couple hours to come to grips with it, then fine," Caplan said. "But you don't want to be spending time and resources, especially in intensive care, dealing with dead people."
At the hastily arranged news briefing where Dixon initially announced Santillan's death, Renee McCormick, another family friend, said a prayer for the teen. "Jesica is now yours. She's your child, Lord."