In the movies, death in the hospital is usually portrayed as a clear-cut event. A steadily beeping heart monitor changes to a high-pitched drone, the doctor sadly removes his mask, and the family begins to mourn. But in reality, judging when life has truly ended is often a complex and nuanced task. With ventilators, heart pumps, and medications enhancing vital functions for critically ill patients, it’s often an experienced neurologist who must make the ultimate decision of whether the person’s brain has irreversibly damaged and permanently ceased all function.
To equip physicians, including neurologists, neurosurgeons and critical care physicians, with the tools to reach this important and difficult conclusion, neurocritical care experts Jeffrey Frank, Fernando Goldenberg, and Agnieszka Ardelt of the University of Chicago Medicine devised a way for them to practice all dimensions of diagnosing brain death, from the medical to the legal to the ethical. Last fall, with collaborators Morris Kharasch and Ernest Wang at the NorthShore Center for Simulation and Innovation, Frank, Goldenberg, and Ardelt organized an international Brain Death Simulation Workshop, a first-of-its-kind training session that uses mannequins, professional actors, and national experts to cover the topic from every angle.
“You may think it’s straightforward, but brain death diagnosis is complex enough that even experienced physicians, unless they do it and think about it regularly, have variable approaches on how they go about brain death diagnosis and management,” said Frank, Professor of Neurology and Surgery at University of Chicago Medicine. “Even though there are published and generally accepted brain death guidelines, doctors have variable experience and confidence with this process.”
Correct diagnosis of brain death requires thoughtful clinical analysis of objective information, unique clinical examination skills and a familiarity with more advanced tests that may, at times, be relevant to establishing brain death. The diagnosing physician also must to be familiar with less commonly-performed procedures, such as the apnea test to assess the brain stem’s control of breathing functions. Due to inexperience, these tests are performed with variable quality and success, and, in some settings, are delegated to non-physicians who may be ill prepared for appropriately conducting and interpreting the test properly.
For the morning session of the day-long workshop, trainees interact at three stations. The first involves working with a mannequin that simulates the characteristics of a critically ill patient who has died through irreversible cessation of brain function. The mannequin allows the trainees to conduct a through neurological examination, including the apnea test, and manage the complex physiological derangements that occur when the brain stops working. These activities are performed under direct observation by experts who provide individualized and group feedback.
It is difficult for some people to understand or explain how a person can be dead while his or her heart is still beating. So, the second station involves each of the trainees getting experience as the physician sharing “the bad news” to unsuspecting “family members,” portrayed by a group of professional actors who are trained to simulate a grieving family.
“You have to deliver very bad news about how his or her loved one died, and even worse, you have to explain that someone died but their heart is still beating,” Frank said. “It’s a setting for disastrous communication. However, for optimal coping, the patient’s loved ones need to understand and accept that death has occurred. When this discussion is poorly handled, confidence is shattered and all of the necessary, obligatory decisions become very complicated.”
The experts and the actors then provide subsequent constructive feedback to each trainee about his or her approach, communication skills, and professional interaction. They stress the importance of using unequivocal terms such as “irreversible” in explaining the nature of brain death, while avoiding misleading terms such as “life support” for the ventilator and other equipment that maintain a patient’s physiological stability despite the occurrence of death. But Frank said that the trainees can also receive guidance from their own perspective on how the simulated discussion unfolded.
“The best teacher during that interaction is going to be your own introspection on the experience,” Frank said. “You’re saying ‘I’m an idiot, I said that. I can’t believe I did this.’ And it’s better to do that with this kind of interaction than in real life with patients.”
The third station of the morning involves reviewing and discussing with experts the clinical information and brain scans of six selected patients who appear brain dead, though only one of the six actually meets the criteria for brain death. The focus of this station is to help physicians recognize brain death mimics and develop an approach to brain death diagnosis that never allows for mistakes.
In the afternoon, trainees participate in small group discussions on topics both inside and outside the boundaries of medicine. Some discussions cover the appropriate use of specific testing for brain death confirmation or the medical approach to stabilizing patients with some of the complications that happen when the brain stops working. Others discuss specific cross-cultural and religious perspectives that can sometimes be part of a family’s coping and acceptance of brain death diagnosis, or ethical boundaries between physicians and organ procurement organizations that allow the physician to comply with relevant laws while still focusing in on what is best for the patient and family.
Encouraged by the first workshop, which involved 30 trainees from all over the world and 15 experts from all over the country, the group has scheduled another event for November 2012. The curriculum is also being considered as a “gold standard” for training by the Declaration of Death Working Group, a task force organized by the federal Health Resources and Services Administration to improve standardization of brain death diagnosis and management. Meanwhile, the University of Chicago team’s brain death research group is continuing to study the variability in how brain death diagnoses are currently made in hospitals, how to best educate physicians about brain death, and some of the lingering questions about the physiology of brain death.
“We feel that the inaugural brain death simulation workshop we conducted in fact demonstrated not only that this is a worthwhile thing to do, but is perhaps the first step toward achieving a goal that many of us have had in our mind for years, which is establishing a more uniform way to train professionals on how to approach brain death diagnosis with rigor, understanding, and constructively work with families in a way that optimizes their understanding and coping,” Frank said.