This transcript has been edited for clarity.
Andrew N. Wilner, MD: Welcome to Medscape. I'm Dr Andrew Wilner. Today my guest is Dr Gene Sung, the senior author of a recent paper in the Journal of the American Medical Association on a refined approach to determining brain death. It comes from the World Brain Death Project. Welcome, Dr Sung.
Gene Sung, MD: Thank you.
Wilner: 'You're the former president of the Neurocritical Care Society. Was it your interest in neurocritical care that exposed you to these situations where you assess whether the patient is brain-dead and got you involved in this project?
Sung: Yes, it's very much so.
Wilner: The name World Brain Death Project sounds pretty ambitious.
Sung: At the same time, it seemed easier than it ended up being, which was a 5-year project. But it was definitely a project we felt was of great importance.
Wilner: What did the project conclude?
Sung: There were two main goals. One was to try to minimize differences in the determination of brain death occurring worldwide, and the other was to provide almost a textbook of what we currently know about brain death as a resource for anybody who had questions about it or its features. We even had one chapter devoted to what we don't know about brain death and possible research projects that should be done to help us expand the knowledge base of what it is and how to identify it.
Wilner: When I do a brain death examination, I follow the American Academy of Neurology checklist. Yet, one of my colleagues — for example, in Paris — may be doing this differently.
Sung: A number of papers have been published showing the differences in guidelines in various countries. Even here in the United States, different states will have different guidelines of how to determine brain death. Many of the most common differences that we've seen are the number of examinations that need to be done. Some countries or states require just one examiner and one exam, whereas others may require two or three. Some guidelines require ancillary tests. Most in the United States only require the clinical examination and not advanced tests.
Wilner: I'd like to emphasize that your project's consensus was that it was only necessary to conduct one exam that fulfills all of the clinical criteria. Only one examiner is necessary to do that careful examination. Of course, all of the confounders, like hypothermia and sedation, have to be controlled for. But ancillary tests like a flow study on MRI, SPECT, or an angiogram are not required. Is that correct?
Sung: That's what our recommendations are. We have ample evidence from the literature that clinical examination is still excellent at determining brain death, as long as there are no confounders. We have a very thorough, specific list of all the different possible confounders that could influence examination, making sure those are not present and also establishing how to do the examination, etc.
To be clear, different countries will still probably do some things differently, and that's not completely expected, but we hope that we can minimize some of these differences. A number of countries don't actually have brain death protocols or guidelines, so hopefully they can use this to help develop their own and start that process.
Wilner: I'm going to challenge you a little bit and ask, why is it so important? We have patients who are so sick — for example, who might have massive intracranial lesions. You examine them to see if they're breathing a little bit or have a pupillary reflex, but that's it. They're not clinically brain-dead, but when we talk with the family about withdrawing care, it's pretty obvious that the person is not going to recover. Why do we have to be so specific that this patient is brain-dead?
Sung: Certainly, to help the family deal with someone who's passed away, and for the many ethical and legal reasons to know if someone has died or not. This is one of the ways to determine that someone's died.
There's also the possibility of organ donation. Certainly, we don't take organs from living people unless they volunteer for that. If we can determine that someone's passed away, that can then allow that process to happen as well.
Wilner: We're doing transplants all over the country and there's a shortage of organs, so there is a pressure when organs may become available. How much has that driven the need to be clear about whether a patient is dead or not dead? Or is that a completely separate issue?
Sung: The two ideas are linked now, but first and foremost, it should be clear that the history of the recognition of brain death came about separately from organ donation and transplantation. It really came from the development of CPR, mechanical ventilators, and cardiac resuscitation, which allowed people's hearts to get started again and their breathing to be controlled. But soon after, in the 1950s, came the realization that these people may never wake up, that they basically were dead and their bodies would start decomposing. This was a recognized phenomenon that had nothing to do with organ donation. This is what gave rise to the idea that they had actually passed away and the term "brain death."
Later, as organ donation became more and more common, it also became clear that these patients would actually become good organ donors. So these ideas are now linked to each other. But the World Brain Death Project was not created due to anything to do with organ donation or transplantation.
Wilner: That's a really important observation. There's this feeling while you're pulling the plug that you're killing the patient, but in reality they are already dead. And even if you continue to support them by, for example, giving them fluids and nutrition, keeping the ventilator going, and suctioning them now and then, they will not survive for an extended period of time. Is that correct?
Sung: That is correct. We're better and better at actually taking care of the body, for better or worse. We know more about physiology. We can give many different kinds of new drugs, hormones, and other things to supplement whatever the body needs. We can keep the body going for quite some time. But the patient really has died, so to give some finality to their family is the reason for confirming brain death. Also, it's unethical to keep a dead person attached to all of these things and keep the body going for no real, meaningful reason.
Wilner: Your paper featured a kind of caveat. Normally, one exam by one examiner is needed to confirm brain death, but I saw in the fine print that if it's a pediatric case they want to do additional exams. What the story there?
Sung: There are a lot of possibilities for children and infants to recover from injuries that older people can never recover from. There's always a concern that maybe the child has something that's survivable. The history of pediatric brain death has always been two examinations done 24 hours apart. There was no interest among the pediatric intensivists to change that. There wasn't any data, such as there has been in the adult population, that one exam was really good enough. That stipulation has continued with the World Brain Death Project to have two examiners for the pediatric group, which I think is very reasonable.
Wilner: It may be an opportunity for some energetic researcher to go back and look at whether there are any discrepancies. Was there ever someone who was brain-dead on the first exam and wasn't on the second? It's never happened in adults, but in children maybe it's possible. Is that the concern?
Sung: Yes, there have periodically been cases of concern or a lot of press attention given to different brain-death cases, which are almost always in the pediatric group. Having more research into this would be great. But in the meantime, the tack that we took for the World Brain Death Project was to be as conservative as possible. We didn't want to make any mistakes and declare someone dead when they were possibly not. So, keeping that rule of two exams for the pediatric group was very reasonable.
Wilner: For American practitioners, what would you emphasize about these guidelines? What do they need to know that might be different from or even the same as what they're doing now?
Sung: Even in the United States, different states have some different guidelines. That's not going to change because there are legal issues. You'd have to change laws. For instance, where I am in California, we have to have two exams and two different examiners. That's the law currently. Now, hopefully we can change that, but that's the law.
As far as differences between the national recommendations from the American Academy of Neurology and the World Brain Death Project, there aren't that many significant differences. In our project, we do go into more detail about different aspects of the exam, with ancillary tests, etc. But we don't really conflict very much at all.
Wilner: There's a great table you provide of all the things you should make sure to do so that you can confidently say the patient is brain-dead. I thought that was very helpful. As a reminder, your paper was published in JAMA this past August, and it's a wonderful resource.
Dr Sung, I want to thank you very much for sharing your experience and developing these criteria with the World Brain Death Project.
Sung: Thank you very much.
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Cite this: New Guidance on Identifying Brain Death - Medscape - Jan 06, 2021.