Sunday, October 21, 2018

Brain death?

A 13-year-old Alabama boy who had his skull crushed by a dune buggy trailer has made a miraculous recovery after his parents signed documents to make him an organ donor.

Mobile resident Trenton McKinley was admitted to hospital in March with seven skull fractures following a freak accident at a friend’s house. The friend was driving a children’s dune buggy with a trailer attached when he slammed on the breaks too quickly.

The boy managed to throw a four-year-old girl—who was also riding in the trailer—onto the safety of the grass before it flipped. However, he was pinned and suffered severe brain damage.

According to Trenton’s mother Jennifer Reindl, via Fox 10, the doctors said her son was unlikely to recover. “All I saw was a stretcher with his feet hanging out,” Reindl said. “He was dead a total of 15 minutes. When he came back, they said he would never be normal again.

“They told me the oxidation problems would be so bad to his brain, that he would be a vegetable if he even made it.”

Reindl eventually made the call to have her son’s life support switched off and for his organs to be donated to other children who were in need of a transplant. “Five kids needed organs that matched him. It was unfair to keep bringing him back, because it was just damaging his organs even more.”

But just one day before the life support was to be switched off, Trenton awoke, speaking in full sentences. “I hit the concrete and the trailer landed on top of my head,” Trenton said. “After that, I don’t remember anything.”

He now attributes his recovery to God and says he remembers spending time in Heaven. “I was in an open field walking straight. There’s no other explanation but God. There’s no other way. Even doctors say it.”

Trenton still faces an uphill battle. He has already had three surgeries and regularly suffers from nerve pain and seizures. A fourth surgery is upcoming to replace half his skull, which is being kept frozen at the hospital.

Despite all of this, Trenton can still smile and crack jokes. “I said I could turn sideways and put salsa in there and eat chips and dip out of my head. No more washing dishes for me.”

Earlier this year, 13-year-old Trenton McKinley from Alabama and his parents hit the media circuit to talk about the miracle of Trenton awakening after being declared brain dead from a vehicle accident—1 day before his organs were scheduled to be harvested.

The likely explanation for such "recoveries" from brain death, according to experts, is that these individuals were never brain dead in the first place. "Errors have been made where people declared brain dead were later found to have spontaneous movement that should not have been possible," says Robert M. Sade, MD, professor of surgery and director of the Institute of Human Values in Health Care at the Medical University of South Carolina in Charleston. "In virtually all those cases, brain-death determination was not done correctly. If you don't go through the exact protocol for brain-death determination, you're likely to have patients diagnosed as being dead by neurologic criteria who are, in fact, not brain dead." 

A more typical brain death error is the 2011 case of a 55-year-old with brain injury who was treated with hypothermia to try to optimize neurologic recovery. He was declared brain dead 24 hours after he was rewarmed—which was too short a period of time. During preparation for organ procurement, it was noticed that he had regained some brainstem reflexes—he certainly wasn't fine—and, therefore, wasn't brain dead.

When the American Academy of Neurology (AAN) updated its guidelines for determining brain death in adults in 2010, a committee of experts searched the literature and found no legitimate "reports of patients recovering brain function when the criteria for brain-death determination was used appropriately," says Ariane K. Lewis, MD, associate professor, department of neurology and neurosurgery, NYU Langone Medical Center, New York City, and a member of the AAN's Ethics, Law, and Humanities Committee.

But at the same time there is no way of knowing how many people recover from brain death because they are usually quickly removed from life support or become organ donors…

Recently, however, the high-profile case of Jahi McMath has caused some experts to question whether brain-dead patients are truly dead and more families to legally fight a loved one's brain death diagnosis.

In 2013, McMath was 13 when complications from a tonsillectomy led to cardiac arrest and an anoxic brain injury. A pediatric neurologist, a pediatric intensivist, and a pediatric neurologist from another institution declared her brain dead, a diagnosis her family did not accept. Subsequently, two neurologists stated that McMath was not brain dead based on their interpretation of an EEG, an MRI, and an MRA done a year later and observation of video clips from 2014 to 2016 that appeared to show McMath following commands and communicating with finger movements.

"We have high confidence that McMath's initial diagnosis of brain death was correct," says Thaddeus Mason Pope, JD, PhD, director of the Health Law Institute and professor of law, Mitchell Hamline School of Law in St Paul, Minnesota. "It's never happened in human history that someone correctly diagnosed as brain dead is no longer dead."

To definitively prove that McMath had recovered sufficient brain function to be considered alive, two physicians would have had to conduct another formal determination of brain death to refute the initial one.

"If that were proven, that means that there is something wrong with how we diagnose brain death, because it's supposed to be an irreversible condition," Pope says. But that second evaluation was not done and never will be because McMath died from liver failure in June 2018, nearly 5 years after being declared brain dead.[See:]

James L. Bernat, MD, is one brain death expert who believes the current neurologic tests leave too much room for error, and, consequently, patients are being declared brain dead who aren't.

"There are a group of people who strongly believe that although McMath fulfilled the pediatric brain death criteria, she wasn't really brain dead because she retained certain brain functions," says Bernat, active emeritus professor of neurology and medicine at Dartmouth Geisel School of Medicine in Hanover, New Hampshire, and former chair of the AAN's Ethics, Law, and Humanities Committee. "If she wasn't really brain dead, which I believe to be the case, then it suggests that our tests are not fully accurate. Some of us have argued in response to McMath and other cases that have been published that we need to tighten up the tests to eliminate cases like this getting through in the future."

Making brain death criteria more rigorous, however, would likely reduce the number of brain-dead organ donors, who are the primary source of transplantable organs, including all hearts. Sade, who previously ran South Carolina's organ procurement program, stirs the brain death controversy in the opposite direction. He is advocating for potential organ donors who are nearly dead to have their organs harvested, which would make formal brain death determination unnecessary.

"Once a potential organ donor's death is imminent, I would like for us to be able to remove his organs even though he is still breathing, and his heart is beating," Sade says. Waiting until brain-injured patients progress to brain death results in physiologic abnormalities and organ damage from neurologic and hormonal changes, he says.

"Any organ donor would want the organs to be in the best possible condition and as many organs used as possible for transplantation." Sade estimates that as many as 6684 additional organs could be retrieved from brain-injured organ donors who were imminently dead rather than brain dead. "We could wipe out the waiting list for all organs for two or three years," he says…

"The debated issues were that brain death isn't the same thing as death, that it is a contrived concept for the purposes of organ donation, that is outdated and antiquated, and other claims," Bernat says. "But until recently, those claims haven't generated much traction."

The controversial brain death determination of Jahi McMath changed the discourse, however. "When you have the New Yorker, the New York Times, and the Wall Street Journal writing about the Jahi McMath case, the volume on brain death gets turned up," Pope says. "Brain death has worked pretty well for 50 years, but there is a growing level of mistrust and skepticism, and we need to do something to bolster its legitimacy."…

Every state in the United States has adopted the Uniform Determination of Death Act (UDDA), which defines death as the "irreversible cessation of circulatory and respiratory functions" or the "irreversible cessation of all functions of the entire brain, including the brain stem."…

But ethicists have always found the UDDA to be problematic. "The Uniform Determination of Death Act is a legal fiction because it requires irreversible loss of function," Sade says. "There are some patients who meet all the clinical criteria for brain death, and yet they still have cells in their brain that are neurologically active. They can survive for relatively long periods of time, although these cases are very infrequent. Usually they die within a matter of days after they meet neurologic criteria for brain death."…

In light of the Jahi McMath case and recent lawsuits by other families challenging the validity of brain death, it's time for "an august, interdisciplinary committee of physicians and philosophers" to revisit the medical and legal standards for brain death, Pope says.

Ultimately, however, "brain-death determination requires an arbitrary decision on when someone is dead enough," Pope says. "There will never be zero activity in the brain (at brain death). At some point, you have to make a value judgement of what is meaningful brain activity. There is no objective truth on where to draw that line."

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