The Chair of the AAN’s Ethics, Law and Humanities Committee spoke to the American Academy of Neurology’s goal to improve the consistency of determining brain death.
James Russell, DO, MS
This week, the American Academy of Neurology (AAN) published a position statement, endorsed by both the American Neurological Association and the Child Neurology Society, calling for uniform laws, policies, and practices on brain death.
This position, authored by James Russell, DO, MS, and other members of the AAN’s Ethics, Law and Humanities Committee, noted that a failure to provide specificity the majority of states’ laws, as well as inconsistencies among the brain death protocols of medical facilities across the country, has led to the differing of interpretation of the definition of brain death in some high-profile cases.
“The AAN wants the general public to know that when these guidelines are followed, the result is an accurate determination of brain death,” Russell said. To speak further to the position statement and its intention, Russell, a neurologist at Lahey Hospital and Medical Center, discussed the news with NeurologyLive.
James Russell, DO, MS: The Ethics, Law, and Humanities committee, which is where this idea originated from, is a unique committee as a standing committee not only of the American Academy of Neurology but representing the American Neurological Association and the Child Neurology Society as well. This position, although beginning within of the Academy, represents a position of those other two organizations as well. And in the spirit of the AAN vision to be valuable to its members as possible, I think the key aspect of this position is to provide support for the members of these 3 organizations in the following 3 ways.
One, to explicitly endorse the conclusions of the Uniform Determination of Death Act (UDDA) of 1981—that brain death and cardiopulmonary death are biologically equivalent. Two, to explicitly recognize that the 2010 AAN guidelines for adults and the 2011 American Academy of Pediatrics, Society for Critical Care Medicine, and Child Neurology Society guidelines for pediatrics do, in fact, represent the clinical or medical standards for brain death determination. And third, an attempt to provide guidance for members of these organizations when requests are made either to forgo brain death examinations or to maintain organ sustaining technology indefinitely and to try to help them in those very difficult situations when they do arise.
The nidus of this whole project began with the recognition of the Ethics, Law, and Humanities committee that there was a confluence of some high-profile brain death cases. And the concern of our committee was that the publicity associated with them (which was not always accurate) might serve to erode the public trust in brain death as a concept, specifically, and in the accuracy of its determination. And, in fact, to answer another part of your question, there’s good data that indicates a lack of uniformity in terms of how brain death is determined in the training of people that do this, their compliance with existing guidelines, the manner in how it’s done, who does it in any given institution, how often it needs to be done, the way tests are used or not, and the lack of uniform policy within healthcare institutions in the United States. That lack of uniformity may also serve to jeopardize the public trust in the accuracy of brain death.
That’s where this whole thing started, and that’s what the goal is of the Brain Death Working Group, which is a group of individuals that originated from a summit that was held in the fall of 2016 supported by the American Academy of Neurology. It was a multidisciplinary summit where a group is now working to achieve uniformity in a number of these different aspects in brain death determination, including gaining recognition of all state jurisdictions that the pediatric and adult guidelines are the medical standards by which brain death should be determined. That’s sort of our self-imposed charge. We’re trying to do all this with the ultimate goal of bolstering the public trust in brain death.
Russell JA, Epstein LG, Greer DM, Kirschen M, Rubin MA, Lewis A. Brain death, the determination of brain death, and member guidance for brain death accommodation requests. Neurology. Published online January 2, 2019. doi: 10.1212/wnl.0000000000006750