Matthew P. Kirschen, MD, PhD
Krista Lim-Hing, MD
Michelle Schober, MD
Jamie Labuzetta, MD, MSc, MPhil
The art of medicine requires practice honed through careful study of masters. Before we are tasked with snaking a 7Fr catheter into the subclavian vein unsupervised, we’ll have at least reviewed the relevant NEJM video and performed a number of procedures under the careful supervision of a senior clinician. Skill requires instruction, supervision, and support. However, when it comes to the matter of determining life and death, sometimes even this kind of modest tutelage is not provided. There is an ethical obligation at the center of brain death: we must sufficiently educate those responsible for determining and communicating it.
Despite the passing of more than half a century since its first formal introduction (1), the concept of brain death continues to elicit controversy. National and international variability in conceptualization, criteria, practice, and documentation of brain death tragically leads to misunderstanding with lay and judicial questioning of the validity of brain death determination (2, 3). Aided greatly by the efforts of our colleagues Ariane Lewis, Gene Sung, David Greer, and many others, the World Brain Death Project published in 2020 sought to harmonize brain death for the international community, while active revisions to the Universal Declaration of Death Act seek unity within our national borders. We at the NCS Ethics Committee strongly believe that how we educate and monitor the implementation of established (and new) brain death guidelines will greatly impact not only the lives of patients and their families but also the health care providers entrusted with life and death decisions.
Many questions arise as to how one might operationalize education and monitoring. “Procedural competency” has not traditionally been applied to determination of death, and standards for education about brain death are also varied across multidisciplinary professionals who interface with brain death. With differences identified between states and even hospitals, is there any way to “standardize” brain death education? Professional societies including the AAN (American Academy of Neurology), NCS, and SCCM (Society for Critical Care Medicine) have called for greater education but stop short of proposing how this might occur. An important first step would be for post-graduate training programs in specialties that interface with brain death determination (neurology, neurosurgery, critical care in adult and pediatric/neonatal medicine) to define brain death education milestones and to delineate competencies and EPAs (entrustable professional activities) related to brain death. When critical care specialists graduate from their multidisciplinary fellowships after 1-3 years, they will require the confidence and comfort not only to declare brain death, but also to discuss brain death with surviving family. Unfortunately, many graduating multidisciplinary critical care trainees lack this confidence and comfort (4). With upcoming consensus criteria across multiple professional societies, there will at least be a greater and more consistent standard towards which to educate.
Post graduate education and professional societies should also address an important barrier to competency and consistent performance after training: the often low volume of cases to which an individual practitioner may be exposed. The volume of brain death cases annually is a mere fraction of all deaths, and more likely to be clustered at large-volume referral centers including trauma centers. A sampling of senior multidisciplinary fellows indicates that many senior trainees have not been exposed to even five brain death cases during their medical education to date, and the numbers are lower for non-neurologically trained critical care fellows (4).
For individuals who want additional education, curricula are available to the medical community for nominal fees or societal membership, including through the Neurocritical Care Society. The educational platform available from NCS is well-developed, comprehensive, and based on the AAN guidelines for determining brain death. Utilizing a previously developed or novel toolkit for clinicians allows for the introduction of a credentialing process for a task that can have no perceived fallibility.
Finally, societies should strive to develop guidance for institutions to support practitioners with family conversations and challenges towards brain death. Many institutions maintain a policy and procedure for brain death, including checklists of examination maneuvers—assuming one is even familiar with what something like a “jaw jerk” is—but do not prepare a trainee or practitioner for family conversations disclosing that their loved one is brain dead. This is often “on-the-job” learning with little opportunity for simulated conversations to practice faux-pas and miscommunications in a safe setting. Unfortunately, research has shown that there are multiple categories of error in communication about brain death (4). Miscommunication begets misunderstanding and mistrust.
In a similar ethos, there is a recognized need to develop formalized education on brain death as a component of initial nursing education and ongoing training. Bedside critical care nursing colleagues spend multiple hours with families as they care for patients. This affords them the opportunity to interact with families and answer questions that families may forget to ask or not feel comfortable asking the physician team members, or that newly come up regarding the patient (e.g., why did they move their legs?; is he getting better?). Therefore, our nursing colleagues must also be equipped with confidence and competence in understanding brain death definitions, processes, and examination (5). Nursing input can be an invaluable complement to the physician team members’ discussions with family about brain death and help minimize the risk of miscommunication that might arise when members of the care team give families different information.
In addition to initial training, refresher education is another topic deserving of attention, especially as guidelines and consensus changes on how to determine brain death. How will this information be publicized and disseminated? How will appropriate education take place for individuals who need guidance or continuing education? Free didactics and/or simulated training will be paramount to ensuring equity of care and uniformity of declaration.
The upcoming multi-society consensus on brain death determination is a tremendous and important step towards standardization. At the same time, we must standardize education for all practitioners interfacing clinically with brain death. The NCS Ethics Committee plans to tackle some of these difficult and provoking issues in an upcoming publication—stay tuned!
References
- P. Mollaret and M. Goulon: [The depassed coma (preliminary memoir)]. Rev Neurol (Paris) 1959; 101:3-15
- D. M. Greer, H. H. Wang, J. D. Robinson, et al.: Variability of Brain Death Policies in the United States. JAMA Neurol 2016; 73:213-218
- D. M. Greer, S. D. Shemie, A. Lewis, et al.: Determination of Brain Death/Death by Neurologic Criteria: The World Brain Death Project. JAMA 2020; 324:1078-1097
- P. M. Chen, A. Trando and J. N. LaBuzetta: Simulation-Based Training Improves Fellows' Competence in Brain Death Discussion and Declaration. Neurologist 2021; 27:6-10
- P. M. Chen and J. N. LaBuzetta: A Qualitative Identification of Gaps in Understanding About Brain Death Among Trainees, Health Care Personnel and Families at an Academic Medical Center. Neurohospitalist 2020; 10:266-271
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