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Jesica Santillan and Duke: What We Learned
The death of 17-year-old Jesica Santillan after she mistakenly received incompatible organs during transplant surgery has provoked grief, concern and reflection across America and particularly at Duke University Hospital, where her surgery took place. Duke's actions in the wake of this tragic error have been commented on broadly in the national and local media and I'd like to address my perspective.
Our Medical Center deals effectively with highly complex medical situations daily. This is what we do, and we are prepared to handle even the most difficult problems. The issues surrounding Jesica Santillan were unlike anything we've experienced as individuals or as an institution. In just a few days, her case forced Duke to grapple with some of the most troubling questions that face today's hospitals and physicians: medical questions about mistakes in care and how to prevent them, ethical questions about organ transplantation and end-of-life issues, and communications questions about balancing a patient's right to privacy, the needs of the family, and the public's right to know.
We at Duke tried to find the right answers to these questions. In most instances, I believe we were successful, but there were also things that we wished we had done better. But I am certain that, every step of the way, we at Duke were completely honest with Jesica's family, and I know we provided her the best available care under the most trying of circumstances. For any hospital or physician, these are the crucial obligations, and I am confident we fulfilled our medical responsibilities and did all we could to save Jesica's life.
As much of America knows, Jesica received a heart-lung transplant at Duke on Feb. 7. Because of a misunderstanding between her surgeon, Dr. Jim Jaggers, and the organ transplant coordinating agency that provided the heart and lungs, Dr. Jaggers did not learn until surgery was nearly complete that the organs came from a donor with a different blood type than Jesica.
Immediately after surgery, Dr. Jaggers and Duke took several key actions. Jesica's family was notified immediately by Dr. Jaggers that an error had occurred and he explained in detail what had happened, enabling them to make informed decisions about her care. Duke offered all its medical resources to treat Jessica. We hope that what we have learned will contribute to the development of new national guidelines that will prevent such a mistake from happening anywhere.
Immediately after surgery, Duke contacted the United Network for Organ Sharing (UNOS), the nationwide medical network that identifies transplantable organs, notifying them that Jesica was in critical need of another transplant. Remarkably, new organs were identified in 13 days, and she received a second transplant on Feb. 20. For a short period immediately after the second operation, her new organs functioned well, but her overall condition continued to deteriorate, and she died on Feb. 22.
One of the sad facts of organ transplantation is that there are simply not enough organs available to save everyone who needs a transplant. Because too few Americans become organ donors, 17 people die every day waiting for transplants that never happen. The combination of this scarcity and the initial mistake in Jesica's case presented Duke with a medical situation that few hospitals or physicians have faced. Consequently, some have charged that Duke should have done more to save Jesica. And at the same time others have suggested that Duke did too much.
Some have asked, why didn't Duke announce the blood-typing mistake immediately after the first transplant and launch a public appeal for compatible organs? One reason is that Jesica's family initially asked us not to. Another reason is that it would not have been appropriate for us to initiate publicity. The organ procurement system used by all hospitals was designed to allocate organs on a fair and equitable basis while considering the degree of need. It is inappropriate for Duke to publicly solicit organs for specific patients as this would be unfair to others awaiting organs as well. It cannot be overlooked that it was the system that ultimately identified the second set of organs for Jesica.
During the week following the first transplant, Duke cooperated with Jesica's family, acknowledging in four separate news reports that Jesica was rejecting her organs but respecting the family's wish not to say more. Around Feb. 14, the family's representative disclosed the organ mismatch to the news media. This information was first reported by a local television station on the evening of the 14th and appeared prominently in a local newspaper as a page one story on Sunday, Feb. 16. On Monday, Feb. 17, Duke acknowledged publicly what had happened.
Others have said that Duke should not have provided a second transplant to Jesica, suggesting that the second set of organs should have gone to another patient whose odds of survival might have been better. To this, we say that after the blood-typing mistake, we treated Jesica just as we would have treated any other gravely ill transplant patient: she underwent the appropriate medical tests that determined she was eligible for and would benefit from another transplant.
When Duke notified the UNOS that Jesica needed a second transplant, her critical condition placed her high on the list. UNOS has confirmed publicly that Jesica was eligible for a second transplant and that the second set of organs became available through customary UNOS procedures, not because of publicity.
Other questions have been raised about the circumstances surrounding Jesica's death on Feb. 22. Some have asked why other doctors were not brought in to provide a "second opinion" before Jesica was declared dead. In fact, a second pediatric neurologist from Duke was brought in to confirm death. And medical standards for "brain death" are clear. If a patient is in a deep coma, a decision about whether to maintain life support might require difficult medical judgments. But Jesica was not in a coma; multiple tests had determined that her brain would never again sustain life. We understand that it is extremely difficult for family and friends to accept the loss of a loved one, but the medical outcome was not a matter of interpretation.
Duke doctors pronounced Jesica dead after a battery of medical tests conclusively determined that her brain had completely ceased to function. The same doctors gave Jesica's family an opportunity to pay their last respects by continuing the use of a ventilator that kept her breathing for four hours after she was declared dead. At about 5 p.m. on Feb. 22, the administration of medications was stopped when the priest who had conducted prayers with the family at the bedside and administered last rites advised the medical team that it was time to cease medication (based on the family's wishes). The medications were discontinued and Jesica's heart stopped beating at 5:07 p.m., at which time the ventilator was turned off.
Children in a pediatric ICU unit are very sick, and we must have strict rules not only to guard against infection but also to protect their confidentiality. Our medical staff needs to be able to focus on their patients without unnecessary distractions. Each patient is allowed no more than two visitors at a time. No one except the immediate family is allowed to photograph a patient. And no one is allowed to publish photographs of our medical team without their permission. Our rules are typical of most hospitals.
It's true that we once asked a visitor to leave Jesica's bedside -- because more than two people were in her room. We did ask someone not to photograph Jesica -- but when her parents photographed her and made those photographs available to the news media, we did not object. We did ask, however, that unauthorized photos that included the faces of our staff be removed from a web site.
However, at no time did anyone at Duke exert pressure on Jesica's family because of anything they wanted to say or said about her situation. While we sympathize with the stress and grief caused by Jesica's sickness and loss, any suggestion that anyone at Duke did exert such pressure is incorrect.
Finally, some have accused Duke of acting too slowly to provide the public with information about Jesica's case once the blood-typing error was disclosed. When we treat patients, our foremost concern is to them and we must protect their privacy, not making public the details of their cases.
None of us will ever forget the profound sense of loss with the death of Jesica, and none of us wants to relive an outcome such as occurred here. We are committed to providing our patients with the very best available medical care with compassion. We are committed to learning from this event, improving the system, and sharing that information with others. And, we are committed to earning the continued trust of our patients. Jesica's memory compels us all to accept nothing less.
About This Article
Published: Mar. 11, 2003
Updated: Nov. 3, 2004
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