Death by Neurological Criteria: Really, Most Sincerely Death
If I could make one change to the way clinicians talk about death, eliminating the term ‘brain dead’ would be a top pick. Brain death is just death. It is confusing and unhelpful to refer to someone as brain dead, and just as the term ‘heart dead’ isn’t capturing a useful distinction, neither is ‘brain dead’. As the authors in a Neurology article put it, following The Wizard of Oz, when someone is brain dead they are “really, most sincerely dead.”
Some background. The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research published Defining Death: Medical, Legal and Ethical Issues in the Determination of Death in 1981. Following that, all fifty states adopted what came to be known as the Uniform Determination of Death Act (UDDA). It says that death occurs when there is either “irreversible cessation of circulatory and respiratory functions” or “irreversible cessation of all functions of the entire brain, including the brainstem.” In other words, according to the law, brain death is death.
There are two legal exceptions. New Jersey and New York both allow for exceptions due to religious belief. If a physician believes that a neurological “declaration [of death] would violate the personal religious beliefs of the individual,” then death should be declared using cardiopulmonary criteria. Many people are familiar with the case of Jahi McMath, a 13-year-old girl who was declared dead in California, then transferred to New Jersey, where she was no longer dead. The exception made that possible. The rest of the time, death by neurological criteria is death.
Death by neurological criteria can cause practical problems. Even to non-religious people, a person might not look dead. His heart is still beating and he can still breath with the assistance of a ventilator. Given this, it’s tempting for physicians to use the term ‘brain dead’. While this is effective in some cases at convincing family members that further treatment is unjustified, others will continue to insist that “everything be done,” perhaps hoping for a miracle.
The better approach is to use the same language in cases of death by neurological criteria as would be used in other cases of death. If prompted, one can add that “while it might look as though he’s still alive because his heart is beating, this is just an effect of the machines and medicine we’re giving him.”
Even when care is taken to educate the family, issues can still arise (as they did in McMath’s case). A clinical ethics consult can be invaluable in this type of situation to help with the conversation, but ultimately, the matter is settled. It is important to provide support for the family and to help them make arrangements, but the patient is dead. Since physicians have no duty to provide non-beneficial care and since they might feel tremendous pressure, the hospital must ensure that they are being supported and are not being obligated to continue any interventions.
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