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Neurologists Issue ‘Call to Action’ For Uniform Brain Death Determination

Rukovets, Olga

doi: 10.1097/01.NT.0000440975.48639.b6
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A new study published in Neurology reports that documentation patterns indicate an improved, but inconsistent adherence to contemporary AAN guidelines for brain death (BD) determination. The paper sounds a “call to action” for more uniform determination and documentation of BD.

The term “brain death” was first coined in a 1968 paper published in the Journal of the American Medical Association. By 1981, a model statute, the Uniform Determination of Death Act, reinforced increasing acceptance of brain death, which was defined as the “irreversible cessation of all functions of the entire brain, including the brain stem.” Subsequently, in 1995 and then in 2010, the American Academy of Neurology published and revised its own set of practice parameters on the determination of brain death (BD).

But, according to a new study published in the Nov. 6 online edition of Neurology, the documentation of physicians who perform brain death determination suggests that practice is improved, but not consistently congruent with the current AAN guidelines. Reporting a “wide variability” in documentation — likely reflecting practice patterns — the paper sounds a “call to action” for more uniform policies, practice, and documentation of BD.

For this study, Jeffrey I. Frank, MD, professor of neurology and director of neurocritical care at the University of Chicago Medical Center, and colleagues reviewed the 2011 chart data of 226 brain dead adult organ donors from 68 hospitals in the Midwest US, and assessed the physicians' adherence to the most current AAN guidelines for brain death determination. They defined adherence in three levels (I= strict, II=loose, III=incomplete) based on documentation of preclinical testing, clinical examination, apnea testing, and ancillary testing level (see sidebar on the “Categories of Overall Adherence to AAN Guidelines for Brain Death Determination” for a full explanation). The researchers found that 44.7 percent of BD cases strictly followed AAN guidelines and 37.2 percent loosely adhered to the AAN guidelines.

The concept of death by neurologic criteria is still relatively new, Dr. Frank told Neurology Today. “Those of us who are experts in this area have been well aware that there remains wide variability in the understanding of brain death and the experience of physicians making this important determination,” he said.

Our most important, but expected, finding from the study, Dr. Frank added, was that the documentation of brain death determination was inconsistently complete and adherent to the AAN guidelines, which, he noted, are not mandated. The findings “may reflect variable practice that can fall short of what may be considered ideal practice.”

He said that although the adherence patterns recorded in this study are fairly high, “it is essential that we strive for uniformity in understanding of brain death by physicians making the determination (through education). Furthermore, it seems only fitting that hospital policies across our country demand a practice with a degree of uniformity of high contemporary standards that maintain public trust. At the present time, hospital policies are also highly variable and, often, not contemporary.”

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The investigators reported that nearly half of patients (n=102; 45.1 percent) had complete documentation of brainstem areflexia and absent motor response and 73.5 percent had completed apnea testing. Of the 60 without completed apnea testing, 93.3 percent had ancillary tests consistent with BD. Thus, overall, the investigators reported, 44.7 percent strictly and 37.2 percent loosely adhered to contemporary AAN guidelines.

For 94.7 percent of BD cases, neurologists and/or neurosurgeons were involved in care — a practice that meets or exceeds the AAN guideline recommendations, the paper stated. “In spite of their frequent involvement, however, only 43 percent of the BD determinations were performed by these specialists,” wrote Dr. Frank and colleagues.

Notably, this is the first study to define the state of documentation of brain death determination across medical centers, he said. Yet, he acknowledged that the study was limited by its retrospective nature, and the fact that documentation may not always reflect practice.

Dr. Frank suggested that improving adherence would require a combination of education, policy development, and advocacy. All hospitals should have contemporary policies regarding BD determination, he said.

Hospitals should engage “physician champions” with demonstrated experience and competence in BD determination to take ownership of assuring uniform adherence to such policies in their own medical center and within their region. Ideally, he added, experts would be available through a 24-hour hotline to offer real-time advice if physicians require assistance in complex situations.

The more complicated task, Dr. Frank pointed out, will be establishing uniform state laws — “so that a person dead in one state will never be considered alive in another state.”

The Neurocritical Care Society ( has now developed exciting leadership in improving BD determination across specialties, he said, by creating and soon offering resources and access to educational opportunities both online and in-person.

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The lead author of the 2010 AAN guidelines on brain death, Eelco Wijdicks, MD, PhD, who was not involved in the current study, said that “uniform rules for brain death determination may be unrealistic by now — there are too many opinions and too many cultures and values. Still, I cannot see why we cannot come up with a consensus that emphasizes simplicity.”

Dr. Wijdicks, a professor of neurology at the Mayo Clinic in Rochester, MN, told Neurology Today that he does not believe there should be any barriers to adhering to the AAN guidelines. “It is clear — there is a checklist to follow. Just stick to it. If you are uncertain, ask somebody else.”

Citing the Neurology study, Michael A. De Georgia, MD, the Maxeen Stone and John A. Flower endowed chair in neurology and director of the center for neurocritical care at Case Western Reserve University School of Medicine, said, “Because brain death is a clinical diagnosis, such incomplete documentation of the exam can lead to confusion and ambiguity where clarity and certainty is required.” This is the first study, he added, to offer “an honest look at how we are actually doing in the ‘real world’ of clinical practice,” and it shows a need for improvement.

Still, Dr. Wijdicks said, the paper represents a relatively small sample, and it is unknown whether it would be representative of national adherence to the AAN guidelines for BD. When compared with earlier audits on documentation, the numbers reported by Dr. Frank and colleagues are actually quite good, he said.

This study is an in important first step, added Romergryko G. Geocadin, MD, an associate professor in the departments of anesthesiology/critical care medicine, and neurosurgery in the Division of Neuroscience Critical Care at Johns Hopkins University School of Medicine, but there needs to be an even more crucial follow-up study looking at ramifications. “What happened to those patients who fell into the ‘incomplete’ documentation category? What happens if there's an error? I think it is important to look at the consequences of non-adherence to the guidelines.”

To improve uniformity, is it time to consider a certification process for physicians determining brain death? he asked, especially given the wide range of specialties and experience of clinicians who may be performing the determination. “Is there a minimum standard, minimum training, and minimum level of competency that these physicians need to have?” Dr. Geocadin said it would have been interesting to include the hospital characteristics (size, staff, available technology) and locations (urban, rural) to see how much of an impact that had on documentation and practice in this study.

Further, the guidelines themselves could also be improved for clarity, suggested Dr. De Georgia. For example, “regarding the presence of confounding variables (how severe do acid-base, electrolyte, endocrine abnormalities need to be to preclude the determination of brain death?) and the use of ‘confirmatory’ ancillary testing.”

Brain death determination is a very important area of practice where neurologists can really take a significant lead, said Dr. Geocadin.

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•. Shappell C, Frank JI, Husari K, et al. Practice variability in brain death determination: A Call to action. Neurology 2013; E-pub 2013 Nov. 6.
•. Wijdicks EFM, Varelas PN, Gronseth GS, Greer DM. Evidence-based guideline update: Determining brain death in adults: Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2010;74:1911–1918.
•. A Definition of Irreversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. JAMA 1968; 205(6):337–340.
•. Neurology Today: “How to Diagnose Brain Death Accurately? An AAN Panel Offers Guidance In A New Practice Parameter”:
•. Neurocritical Care Society resources on brain death:
© 2013 American Academy of Neurology