Of course, any story illustrating the issues surrounding brain death is going to be a sad and tragic tale. In December of 2013, Jahi McMath suffered bleeding complications following a tonsillectomy and tissue removal for sleep apnea. This resulted in a cardiac arrest with an apparent prolonged period of lack of blood flow to the brain. While her heart function was brought back, Jahi suffered severe brain anoxia (damage due to lack of oxygen) and was declared brain dead on December 12, 2013.
Jahi’s tragic story is not over, however, because her family refused to accept the diagnosis of brain death. They took legal action to keep the hospital from pulling life support, and eventually worked out a compromise where the family was able to remove Jahi to their own care. At present Jahi is apparently being cared for in an apartment in New Jersey, on a ventilator and fed through a feeding tube.
There is often some confusion as to what brain death actually is. The term is unfortunately often used to refer to a persistent vegetative state or other severe impairment of consciousness, but this is not accurate. Brain death refers to a complete lack of function of the brain, including basic reflexes in the brain stem. There is a specific protocol for declaring a person brain dead, requiring detailed examination by at least two attending physicians to document the complete absence of any brain function. If the slightest pupillary reflex is present, then the patient cannot be declared brain dead. The criteria also include provisions that there are no medications in the person’s system that can suppress neurological function and their core body temperature is sufficiently high (being too cold can also suppress neurological function).
There are also several types of supporting evidence that can be used when appropriate. These include electroencephalogram, which reads the electrical activity of the brain. A complete absence of electrical activity supports the diagnosis of brain death. Tests looking at blood flow to the brain can also be performed. A complete absence of blood flow to the brain also supports the diagnosis of brain death. These laboratory criteria are not necessary if the patient meets the clinical criteria for brain death, but they can be used if some parts of the exam cannot be done for practical reasons.
Overall the criteria are very conservative. They are designed to minimize the chance of declaring someone brain dead when they aren’t. These are universally-accepted criteria, established in 1995 by the American Academy of Neurology. Since then there hasn’t been a single case of a patient who was declared brain dead by the standard criteria who later recovered.
Legally a patient who is brain dead can be declared dead. They are then legally no longer a living person.
In the case of Jahi the hospital doctors declared her dead based upon brain death criteria, even though her heart was still beating. At that point no further medical intervention is warranted. In fact many consider it unethical and abusive to perform any medical interventions on a dead body. Because of the family’s protests, however, the judge in the case assigned an independent doctor, Graham Fisher, M.D., the chief of Child Neurology at Stanford University School of Medicine, to examine Jahi and make his own determination. He agreed with the diagnosis of brain death.
The family requested that their own doctor also independently examine Jahi, but the judge refused. They wanted Paul Byrne to examine Jahi. Byrne, however, is hardly an objective physician. He is a crusader against the very notion of brain death. He is a neonatologist, past president of the Catholic Medical Association, and an outspoken critic of organ donation based upon the concept of brain death.
As is often the case when declarations of either persistent vegetative state or brain death are controversial, the family or those opposing the diagnosis often claim that there are signs of brain activity the doctors say are not present. In this case the family, sometimes through their lawyer, claim that Jahi has moved her limbs in response to commands. They are also now claiming that independent examination has revealed electrical activity and blood flow to the brain, however this information is not available for independent review.
It is common for there to be spinal reflexes that can cause even dramatic movements in someone who is brain dead. These types of reflexes have been termed the “Lazarus effect” because they may create the impression of someone rising from the dead. Activity in the spinal cord, however, is compatible with brain death, and may be triggered either spontaneously or through mechanical stimulation (such as when a patient is turned or moved during care).
Jahi was moved from California to New Jersey for a specific reason. New Jersey allows for religious exemptions to the legal declaration of brain death. Jahi’s family claims that according to their religious beliefs, as long as her heart is beating she is still alive.
Similar issues arose in the Terri Schiavo case, which came to national attention in 2005. In that case Schiavo was in a persistent vegetative state (not brain dead) and her husband wanted to withdraw life support, while her family refused, resulting in a prolonged court battle. The husband eventually prevailed. At autopsy it was found that Schiavo’s brain weighed about half of what a healthy brain for someone her size should have weighed, evidence of the diffuse and catastrophic brain damage she had suffered.
In that case, as with this one, the family tried to appeal to a cherry-picked expert to give them the answer they sought, and they also claimed that Schiavo was exhibiting signs of brain activity that multiple independent experts concluded was not present.
Reporting on the Schiavo case was also particularly bad. A review found that only 1% of mass media reporting defined a persistent vegetative state, while 21% of articles falsely claimed that Schiavo had the potential to recover.
It is understandable that there would be ethical discussions and disagreements over how best to balance the rights of patients, the demands of dignity, the responsibilities of health care professionals and the state, and the religious freedoms of patients and their families. At the very least, however, such discussions, and their application to individual cases, should be informed by reliable scientific and medical information. Media reporting should also strive to be as scientifically accurate as possible.
Distorting the science and cherry picking evidence are unfortunately common when strongly-held ideological beliefs are at stake.
In the case of Jahi there is also a legal matter at stake. The family is suing the hospital for malpractice. In California there is a legal cap of $250,000 for the wrongful death of a child. There is no cap if the child is injured but still alive, which the suit is claiming. It is therefore likely that a California court will have to officially rule on whether or not Jahi is alive or dead.