The pediatric critical care medicine attending physician in the Department of Anesthesiology and Critical Care Medicine at the Children’s Hospital of Philadelphia spoke about how physicians can better address brain death in pediatric patients.
Matthew P. Kirschen, MD, PhD
When it comes to brain death, physicians are often placed between a rock and a hard place, faced with both challenges in its clinical determination and in conveying the situation to the families of patients. This is especially exasperated in incidences of pediatric brain death.
For this very reason, the American Academy of Neurology (AAN) recently published a position statement, endorsed by the American Neurological Association (ANA) and the Child Neurology Society (CNS), calling for uniform laws, policies, and practices on brain death, and further clarifying the guidelines for its determination.1
At the CNS annual meeting in 2018, Matthew P. Kirschen, MD, PhD, a pediatric critical care medicine attending physician in the Department of Anesthesiology and Critical Care Medicine at The Children’s Hospital of Philadelphia, gave a presentation on the challenges faced by clinicians surrounding brain death. It detailed a number of topics, from the various challenges in the different aspects of the guidelines in terms of declaring children dead by neurologic criteria or having brain death, to the examination itself and some of the tests in doing it—particularly for children with underlying neurological conditions that produce weakness.
To find out more about these challenges and how physicians can possibly address them, Kirschen spoke with NeurologyLive in an interview.
Matthew P. Kirschen, MD, PhD: One of the things that's really important is to have very clear and precise language when talking to each other and when talking to families, and one of the things that we have to remember is that once a child is declared brain dead, they are dead. They have a time of death, a death certificate, and they are legally dead. To then use terms like, “they're on life support”—there's a contradiction in terms. They're not on life support because the patient's already dead. They may be on a ventilator that's pushing air into their lungs, but they're not on life support.
Similarly, when we inform parents that we're going to be taking out the breathing tube—and not only do we not say “we're going to take them off life support” but we don't say “and then your child will die after we take out the tube.” The child is already dead. Their heart will stop because it is currently beating, but they are already dead. We have to be very clear in terms of using the right terminology at the right time, and we need to make sure that our ancillary providers that may not be as familiar with the specific terminology reserve the term “brain dead” and “brain death” for situations in which patients actually meet the specified criteria.
It can often be used colloquially by a nurse or a therapist or another ancillary support person—and even physicians for that matter—that patient is brain dead. What they really mean is that the patient has a severe, irreversible brain injury. They may or may not meet criteria for brain death, but we need to make sure that we reserve the term for when patients meet the pre-specified criteria—not as a surrogate for severe brain injury.
Brain death in the current guidelines cannot be diagnosed in any infant less than 37 weeks corrected gestational age. That has to do with the lack of development of the brain and the brain stem and the inability of us to test many of the cranial nerve reflexes that may not be developed at an earlier gestational age. There is a more conservative set of recommendations for infants less than 30 days that basically ensures that there is a longer waiting period so that we can observe the children for longer.
Sometimes in the infants and young children, particularly after a hypoxic-ischemic brain injury, like from a cardiac arrest, the brain stem is much more resistant to that type of injury and so because of that after the swelling subsides the brain stem may have some residual function. In which, case those infants would not be considered brain dead—they would still have a devastating brain injury, but they would not be considered brain dead. The guidelines recommend that people wait longer between the 2 exams in order to ensure that the condition is irreversible, and the second exam is consistent with brain death. There have been no documented cases where the first exam is consistent in the second exam is not consistent. There are some institutional protocols that require EEG as part of the neonatal exam because of the challenge of examining children of that age.
Clinicians should be aware that the criteria exist, however, sometimes hospital protocols and policies differ from the published criteria, and people should make sure they follow their hospital policies and procedures. It is possible that those may need to be updated to conform with the most recent guidelines, and [the AAN and others recently updated] both the adults and pediatric guidelines. People should use their hospital policies and procedures to make sure that they're consistent with the guidelines. Use checklists whenever possible because they ensure that we don't miss anything in this process where we most certainly don't want to be wrong and inappropriately declare somebody dead.
That all goes along with increased education and training both for our child neurology and adult neurology trainees, but also for physicians in both critical care neurology and neurosurgery who are performing these exams, to make sure that they're done properly, and they're done accurately.
We also need to do work to improve the public's trust in brain death. Part of that has to do with the media's portrayal of brain death. Consistently, you hear news correspondents talking about life support when patients are brain dead. Hospitals are often limited in what they can say when one of these cases gets presented in the public media, and the media needs to make sure that they are also accurate with the words that they choose, with the phrases that they use, to describe these individuals. We encourage them to get experts in clinical brain death to comment on the cases with whatever medical information is available.
1. AAN Calls for Uniformity of Brain Death Determination [press release]. Minneapolis, MN: AAN; Published January 2, 2019. aan.com/PressRoom/Home/PressRelease/2687. Accessed February 26, 2019.
2. Kirschen M. Clinical challenges in pediatric determination of brain death. Presented at: CNS Annual Meeting; October 15 to 18, 2018; Chicago, Illinois. cns2018presentations.conferencespot.org/68200-cns-1.4236681/t002-1.4236982/f007-1.4237071/a030-1.4237081/an032-1.4237082. Accessed February 26, 2019.