In recent weeks, the nation has turned its attention to Jahi McMath, a 13-year old girl in Oakland, CA that was declared brain dead by doctors a few days after surgery to remove her tonsils, adenoids and extra sinus tissue. Privacy laws prevent the release of medical details. However, we know that her hospital course was complicated by significant hemorrhage and subsequent cardiac arrest.
This is truly a tragic situation and a nightmare for any family to face. In the case of Jahi's family, they believe that she is still alive, and that a miracle is possible, and want to prolong her body's biological functioning through the use of artificial mechanical support.
As family members face perhaps the toughest situation and decision of their lives, national debates have once again surfaced:
- What does the term "brain dead" exactly mean?
- Is there a perception that brain death is somehow not as final as cardiac death?
- What is the role of the hospital and medical staff, if any, in helping the family cope with this tragic end-of-life situation?
What Does Being Brain Dead Mean Exactly?
According to the Uniform Determination of Death Act of 1981, an individual is declared dead when he or she "has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem."
The American Academy of Neurology has published criteria for determining brain death that were released in 1995 and updated in 2010 that are the current medico-legal standard.
Once brain death has been confirmed by these criteria, the idea that the patient is on life support is a misnomer simply because there is no life left to support. The idea that machines and mechanical body support can somehow bring a person back to life when they are brain dead has lead to major misconceptions that lead to false hope, and prolongs the end-of-life process.
The Misperception That Brain Death Is Somehow Not as Final as Cardiac Death
During this process, Jahi's mother, Nailah Winkfield has been quoted as saying "I would probably need for my child's heart to stop to show me that she was dead. Her heart is still beating, so there's still life there."
The beating heart has historically been regarded as the definition of life. However, with evolution of modern medicine and ethics, it has become obvious that brain and brainstem function are just as vital for life. Death by standard criteria is easily accepted by grieving families who appreciate the lack of a heart beat, pulse, breathing and the change in skin pallor that accompanies circulatory arrest.
In the absence of these obvious signs, it is extremely difficult for family members to appreciate the lack of brain and brainstem function and accept their loved one's death. Further confounding the picture is the presence of some muscle contractions and reflexes in the brain dead patient that may be misconstrued as signs of life by the family, as may have been seen in this case.
With modern medicine, a failing heart or one that has stopped can sometimes be resuscitated, assisted or even replaced by mechanical devices. However, there is no means to reverse or restore the complete ending of brain function once it has occurred. In fact, there are currently no published and verified reports of recovery of neurological function once a diagnosis brain death has been confirmed, using and strictly adhering to the criteria published by the American Academy of Neurology in 2010.
In Terms of Brain Death, What Is the Role of a Hospital, If Any, in Helping the Family Cope With an Inevitable Situation?
As Director of the Division of Neurocritical Care at University of Utah Hospital, I feel it a duty to be transparent and confirm the finality and irreversibility of brain death. It is our responsibility as physicians to perform thorough, complete and standardized brain death assessments, according to the current medico-legal standard.
Once brain death has been ascertained, there is no reason to offer any false hope for a situation that is irreversible. For a family who's loved one has suffered brain death, it is a time of stress, sorrow and anguish, further confounded by the confusion surrounding this diagnosis. It is our medical and ethical duty to help remove these misconceptions, educate families; and help them comprehend the finality of brain death. We need to be sensitive, provide comfort and solace and help them through their grieving process, in an undoubtedly tragic situation.