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Doctors were unsure of roles as boy died at Children's

The 5-year-old boy had just had electrodes implanted in his skull to track his epilepsy when a massive seizure struck. Though he was in intensive care at Children's Hospital in Boston, one of the world's top pediatric centers, no one ordered the aggressive treatment that could have saved his life.

The seizure racked the boy's 44-pound body for an hour and a half -- with none of his doctors making the decision to give him the aggressive medications normally used in such episodes -- until he stopped breathing. He died two days later, on Mother's Day.

The May 9 episode, investigated by the state and described in a 24-page report released yesterday, revealed serious problems with communication and accountability at one of the city's flagship hospitals, public health officials said. It also triggered a review of all hospital operations by state and federal officials. Paul Dreyer, who investigates medical errors for the Massachusetts Department of Public Health, called the event "one of the worst we've ever seen."

Hospital president Dr. James Mandell issued a strongly worded apology yesterday: "Children's Hospital accepts full responsibility for the outcome . . . and extends its deepest apologies."

The investigation portrays a situation where lines of authority were deeply tangled, and where no one person had accountability for the patient. Following the boy's death, each of the doctors who initially worked on the case -- two at the bedside and one consulting by phone -- told investigators they thought one of the others was in charge. The senior doctors who supervise them also disagreed over which department should have led the treatment, with brain surgeons, epilepsy specialists, and critical-care doctors each saying the other groups were responsible.

Amid the intense activity around the patient, none of the doctors or nurses apparently kept watch over the patient's airway -- rule number one in any medical emergency. When an attending intensive-care physician arrived more than an hour into the seizure, she told investigators, she was the first to notice the patient was not breathing.

The state also found communication and accountability problems in three other cases at Children's between August 2002 and last July. In two cases, the hospital's internal investigation found that doctors and nurses were slow to realize the severity of patients' conditions, possibly contributing to their deaths.

The epilepsy death prompted the hospital's largest policy changes in 20 years, said Mandell, who called the case "extraordinarily painful for everyone at the hospital."

State health officials and hospital executives said that while Children's must make serious changes, similar problems probably exist at other academic medical centers. Teaching hospitals offer complex care not available elsewhere, but are also fertile ground for miscommunications because patients are often treated by multiple specialists. In response to the report, Children's has instituted pointed new policies that aim to cut through traditional layers of deference and seniority and clearly delineate responsibility. The hospital plans to centralize rules for supervision of physicians in training and clarify chains of command -- in the process, stripping away some of the autonomy that hospital departments have enjoyed.

Hospital leaders also appointed an ombudsman, who will take complaints from medical residents if senior doctors brush off their calls for advice. They put in writing a code that is sometimes honored in the breach: Residents must never be criticized for asking a senior doctor for help, only for failing to ask. And they have put intensive-care doctors, not surgeons, in charge of patients who go to intensive care after surgery.

The hospital also temporarily closed the four-bed intensive care unit where the episode took place to evaluate the quality of care there.

The case is the second major crisis in Children's neurosurgery department in almost three years, following the death in October 2000 of Taylor McCormack, a toddler who suffered fatal brain damage while waiting overnight for an operation. Mandell declined to say whether the hospital plans to make any changes in the leadership of the department. But he said he would let nothing stand in the way of the improvements.

Department chairman Dr. Peter M. Black, who also heads the neurosurgery department at Brigham and Women's Hospital, did not respond to requests for comment in recent weeks. Children's said only Mandell would speak to the news media.

After the state review of the earlier cases, the hospital was aware that there were problems in communication, but had not yet implemented changes when the third one, involving the epilepsy patient, occurred. "Could these problems have been prevented if the hospital had acted more efficiently? The answer is yes," said Roseanne Pawelec, spokeswoman for the Department of Public Health. "We are extremely disappointed that that did not happen."

The health department plans to conduct a full review of Children's state hospital license.

"It reinforces that we need to move forward with our efforts at the DPH to reduce medical errors and improve quality at all the hospitals in Massachusetts," said Public Health Commissioner Christine Ferguson. "The positive thing about Children's is recognizing that some things that are traditional don't work."

The epileptic child's parents -- who were present during the seizure -- do not wish to be identified, Mandell said. Despite a published report identifying the child, the Globe is withholding the name at the family's request. Mandell declined to say whether the hospital had reached a financial settlement with them, but said the hospital is working to give them "whatever they need." They went to Children's seeking to learn whether their child could benefit from surgery that removes parts of the brain to reduce the dangerous seizures that characterize the disorder.

"The brain is somewhat like a very complex car battery," said Dr. Robert Fisher, a professor of neurology at Stanford University. "A seizure is a type of electrical storm, in which the brain cells are firing high levels of electricity" in unison, he said.

To determine whether surgery can be done without serious damage to the brain, doctors use a procedure called long-term electroencephalographic monitoring. Plastic grids and strips embedded with electrodes are placed inside the skull, on the surface of the brain. The patient then stays in the hospital for up to a week, wired to monitoring equipment. Antiseizure medication is reduced so the seizures can take place and be recorded.

"Do people ever die from seizures in monitoring situations? It hasn't ever happened in my experience for the past 10 or 12 years, but I have heard of isolated instances where that happens," Fisher said, though he was not commenting on the Children's case. "That's of course isolated and disastrous when it does."

He stressed that candidates for epilepsy surgery are typically the sickest patients, who are at risk of dying from their underlying condition.

Children's does about 20 a year, and has done about 80 since it began the program. But this case was unusual because the child had a seizure immediately after surgery.

"It was a rare procedure followed by a rare event," Mandell said.

In its investigation, the DPH found that the unfamiliarity with the procedure was a major problem: Several of the doctors and nurses told investigators they were surprised at the time that the seizure was not being managed more aggressively -- but thought that was because using higher drug dosages would prevent seizures for several days, which would delay gathering data and keep the electrodes longer in the skull, which increases risk.

But the patient was not yet hooked up to monitoring equipment and, in any case, senior doctors told investigators that in a seizure emergency, doctors should always treat the seizure and "worry about investigative data later."

The state report gives a precise timeline of the boy's death. He went to the ICU after surgery at 1 p.m. on Friday, May 9. At 7:26 p.m. a seizure began. Immediately, it became clear that no one knew who was in charge.

An intensive-care fellow, a physician near the end of specialty training, was at the bedside immediately. A neurosurgical resident, also a relatively senior trainee, was paged and soon joined him. Over the phone, they and the two nurses also consulted an epilepsy fellow who had been involved with the case earlier. The report withholds the doctors' names.

The epilepsy fellow ordered the first dosage of Ativan, usually the first drug used for seizures, up to 4 milligrams for a 44-pound child. But the boy received only 1 milligram, a quarter of a milligram at a time, over 27 minutes of seizing -- far past the time that doctors normally would have switched to stronger drugs.

The fellow who was consulted by phone later said she was surprised to hear that others thought she was managing the case, and assumed that people at the bedside would take charge.

It is unclear who ordered which drug dosages after that. But the report says they were not appropriate. Two doses of a stronger drug, fosphenytoin, should have been given in the first half-hour, senior doctors told investigators. But the boy was given his first dose after 39 minutes of seizing and his second after an hour.

If a seizure lasts more than 30 minutes, doctors typically give a third drug, pentobarbital, and then put the patient under general anesthesia. The boy never got pentobarbital, and was not anesthetized until the attending physician arrived -- an hour and 18 minutes into the seizure.

It was not until then that he was given a breathing tube, since no one had noticed he was not breathing. The patient went into cardiac arrest at 8:55 p.m.

The report paints a picture of a scene in which nearly everyone present knew something was wrong with the child's treatment, but no one did anything to stop it, nor did they discuss those concerns with one another.

Dr. David Blumenthal, who studies medical training at Massachusetts General Hospital, didn't comment on the Children's case specifically, but said communication lapses cause many such problems.

"Making it clear that you can't ask too much, that you can only ask too little, is empowering for residents and ought to be the culture of every teaching institution," he said, "but is probably not."

Alice Dembner of the Globe staff contributed to this story.Anne Barnard can be reached at

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