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New Consensus Statement Affirms AAN Brain Death Guideline, Calls for Consistency and Public Education

ARTICLE IN BRIEF

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SEVERAL CASES in the news challenging the diagnosis of brain death prompted calls for greater public education and compliance with the 2010 AAN guidelines.

A consensus statement that seeks to advocate for uniform policies for determining brain death was developed by a summit of leaders in the field and representatives of multiple medical societies.

In the wake of recent, highly publicized cases that challenge brain death diagnoses, the AAN and a panel comprising experts from multiple medical societies has published a new consensus statement that reinforces the need to advocate for uniformity and adherence to established guidelines on brain death.

The statement, which grew out of a meeting of experts held in October 2016, was published in the January 31 online edition of Neurology.

“Our original practice guideline on the definition of brain death was updated in 2010 to make it more straightforward, simple, and conservative, in terms of erring on the side of not determining brain death, to make sure we were never wrong when diagnosing brain death,” said panel member David Greer, MD, FAAN, chair of the department of neurology at Boston University School of Medicine and chief of neurology at Boston Medical Center. “This is one of those diagnoses where you simply have to be 100 percent accurate. You cannot afford to be wrong.”

The 2010 AAN guideline has not been changed. But the new consensus statement became necessary, the report authors wrote, because of cases like that of Jahi McMath, a California teenager who was declared brain dead following complications from sleep apnea surgery in 2013. Her family fought the determination of death in court and moved the girl to New Jersey, the only state with a religious exemption for those objecting to the termination of life support.

“Multiple reputable experts have confirmed the diagnosis of brain death, but in this case and in several others, the issue has been poorly represented in the media without getting the viewpoint of neurology. We were concerned that public trust might erode in either the concept or the legitimacy of brain death,” Dr. Greer said. “Therefore, we set up the 2016 summit to develop a statement emphasizing the multispecialty agreement as to the validity of this way of determining death.”

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DR. DAVID GREER: “We were concerned that public trust might erode in either the concept or the legitimacy of brain death.”

The new consensus statement reaffirms that the 2010 practice guideline is “the contemporary paragon for brain death determination,” noting that “there have been no documented cases of recovery of neurologic function after determination of brain death, provided the parameter is appropriately followed.”

NEED FOR PUBLIC EDUCATION INITIATIVES

“One source of confusion for the public is poor education about the difference between brain death, coma, and vegetative state,” said neurocritical care specialist Ariane Lewis, MD, assistant professor of neurology and neurosurgery at NYU Langone Health and the corresponding author of the summit report.

“The media does not do a good job of differentiating these states, and often inadvertently uses the wrong words, leading to a generalized lack of understanding,” Dr. Lewis said. “For this reason, summit participants recommended that education initiatives on determining brain death be developed for members of the health care community, legal community, and the public.”

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DR. ARIANE LEWIS: “One source of confusion for the public is poor education about the difference between brain death, coma, and vegetative state. The media does not do a good job of differentiating these states, and often inadvertently uses the wrong words, leading to a generalized lack of understanding.”

The statement also noted that reviews of hospital protocols have demonstrated inconsistency and variability in compliance with the AAN practice guideline, and the qualifications for physicians assigned to determine brain death also vary. This inconsistency also contributes to public confusion about the validity of brain death, said Michael Rubin, MD, assistant professor of neurology and neurotherapeutics at University of Texas Southwestern Medical Center in Dallas, who represented the Neurocritical Care Society at the summit.

“If people don't rigorously follow the guidelines consistently, it starts to look like an opinion rather than fact. While we're not trying to add excessive regulation, we do need some means of demonstrating competency in this set of diagnostic criteria. This also provides a sense of direction for those that are not comfortable with making such a diagnosis: they can choose to pursue further training and demonstrate competency, or say that they are not qualified to do this and request that their institution needs to identify someone who is,” he said.

The guideline recommends that variability be minimized with uniform brain death policies throughout the US health care system, and protocol review by an appropriate regulatory body, such as the Joint Commission, as one option. It also calls for brain death training and credentialing programs for all physicians doing brain death assessments to ensure brain death determinations are made based on the guideline.

CASES INVOLVING CHILDREN

As with Jahi McMath, many of the news-making cases in which families have disputed brain death determinations have involved children. Among them are Mirranda Lawson, a Virginia toddler who choked on a popcorn kernel; Allen Callaway, a 6-year-old boy from Montana who drowned; and Israel Stinson, a California 2-year-old who suffered cardiac arrest after an asthma attack. The public confusion over brain death may be exacerbated, summit participants noted, by the fact that criteria for determination of brain death in adult patients subtly differs from the criteria for pediatric patients.

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DR. MICHAEL RUBIN: “If we can give them an accurate diagnosis that a person has crossed the threshold to a permanent state of no neurologic function, one that we know is valid and accurate and repeatable, regardless of where they go, then they dont have to bear the burden of having to make the decision to stop medical treatment, and hopefully they wont have as much doubt that they should have done something different.”

The pediatric guidelines, which require performance of two brain death examinations and two apnea tests separated by an observation period, and include differing criteria for use of ancillary tests during brain death determination, were published in 1987 and updated in 2011 by the Society of Critical Care Medicine, the American Academy of Pediatrics, and the Child Neurology Society.

GUIDELINES FOR CHILDREN AND ADULTS

“We would like to develop a single set of guidelines for both pediatric and adult brain death determination, and will be working on that going forward,” said Dr. Lewis. Having a single, consistently applied guideline for determination of brain death that is implemented by trained, qualified professionals should help to alleviate suffering, not only for patients, but for family members, she said.

“Most of the controversies that have arisen have been sudden, unfortunate tragedies involving young people, where the family had absolutely no expectation that things would go awry,” said Dr. Rubin. “One can imagine the angst that family members go through, when their loved one has a sudden neurological catastrophe and they are told that there is no identifiable brain function, yet they see that their loved one is still warm and their heart is still beating.”

“It's almost cruel of us as medical professionals to ask family members to utter the words, ‘You can stop now’ in such circumstances,” Dr. Rubin continued. “If we can give them an accurate diagnosis that a person has crossed the threshold to a permanent state of no neurologic function, one that we know is valid and accurate and repeatable, regardless of where they go, then they don't have to bear the burden of having to make the decision to stop medical treatment, and hopefully they won't have as much doubt that they should have done something different.”

Further updates will be forthcoming from the group as they make recommendations for how to implement the goals outlined in the report. In the meantime, Dr. Greer said that neurologists in practice can start by looking at their own hospitals and health systems to determine if they are in compliance with the adult and pediatric guidelines.

“That's the most important and straightforward thing every reader of Neurology Today can do right now,” he said.

BRAIN DEATH SUMMIT GOALS

In addition to representatives of the AAN, participants in the summit included adult neurologists, pediatric neurologists, intensivists, an anesthesiologist, a neuroradiologist, ethicists, and lawyers representing the American College of Radiology, American Neurological Association, American Society of Neuroradiology, Child Neurology Society, Neurocritical Care Society, and Society of Critical Care Medicine. Attendees at the summit agreed to work together to promote the following goals:

  1. Advocate for uniform policies in all US health care institutions through implementation of regulatory oversight;
  2. Develop and promote education initiatives on brain death determination for members of the health care community, legal community, and the public in the US;
  3. Promote brain death training and credentialing programs for all physicians doing brain death assessments to ensure brain death determinations are made based on established guidelines;
  4. Collaborate with the pediatric community to ascertain whether a singular standard for brain death determination can be developed; and
  5. Advocate for a consistent legal approach to brain death determination in all 50 states.

LINK UP FOR MORE INFORMATION:

• Lewis A, Bernat JL, Blosser S, et al. An interdisciplinary response to contemporary concerns about brain death determination http://n.neurology.org/content/early/2018/01/31/WNL.0000000000005033. Neurology 2018; Epub 2018 Jan 31.
    • Wijdicks EFM, Varelas PN, Gronsenth GS, Greer DM. Evidence-based guideline update: determining brain death in adults: Report of the Quality Standards Subcommittee of the American Academy of Neurology http://n.neurology.org/content/74/23/1911. Neurology 2010; 74(23):1911–1918.
      • Nakagawa TA, Ashwal S, Mathur M, Mysore M. Committee for Determination of Brain Death in Infants and Children. Guidelines for the determination of brain death in infant and children: An update of the 1987 task force recommendations-executive summary http://onlinelibrary.wiley.com/doi/10.1002/ana.23552/abstract. Ann Neurol 2012; 71(4):573–585.