What is death? Seemingly among the most simple of questions, but in a world of advanced medical procedures, the answer is much more complex than might first be imagined. Now this very question has evolved into a furious debate with the life of a California teenager in the balance.

The current details of that life outline a parent’s nightmare. On Dec. 9, Jahi McMath, 13, went to the Children’s Hospital & Research Center in Oakland for a tonsillectomy. one of the most common procedures in the U.S., the surgical removal of two oval-shaped pads of tissue at the back of the throat is performed more than 530,000 times annually in children under the age of 15. In McMath’s case, the operation was an elective procedure, intended to relieve her sleep apnea. This, too, is common. Although three decades ago, approximately 90 percent of tonsillectomies were done for recurrent infection. Now about 20 percent are performed for infections with the remaining 80 percent performed for obstructive sleep problems such as McMath’s. Following her surgery, the California teenager’s earliest results seemed positive. Then, she began to bleed profusely and was rushed to the hospital’s intensive care unit.

McMath received transfusions as well as medicine to stop the blood loss, but then she went into cardiac arrest. Soon, she was placed on life support. When her doctors tried to revive her, nothing worked, and after a few days, her brain scans and other tests showed no signs of brain activity. On Dec. 12, just three days after her surgery, the young teen was declared brain-dead and today McMath, whose heart is beating, remains on a ventilator. Meanwhile, her mother has begun a legal battle to continue her daughter's life support.

What is Brain Death?

Brain death means the brain will never revive. It is distinctly different from a coma or other states of partial or complete unconsciousness where some brain activity remains; in cases of brain death, no chance of recovery exists. Because of possible confusion, the Child Neurology Society, the Society of Critical Care Medicine and the American Academy of Pediatrics recently formed a multidisciplinary committee to review and revise guidelines to determine brain death in infants and children.

“Brain death is a clinical diagnosis based on the absence of neurologic function with a known diagnosis that has resulted in irreversible coma,” wrote the authors in their update of the 1987 guidelines published in 2011. “A complete neurologic examination … is mandatory to determine brain death with all components appropriately documented.” For children within McMath’s age group, then, the committee recommends the performance of two complete examinations separated by an observation period of 12 hours. The committee also recommends that these examinations be performed by different physicians than those involved in the care of the child. The first examination is meant to understand whether or not the child has met the accepted neurologic criteria for brain death, while the second confirms the diagnosis based on an unchanged condition. Apnea testing to support the diagnosis is also required. If the apnea test cannot be safely completed, ancillary studies should be performed. For instance, doctors would perform an electroencephalogram to measure electrical activity and a PET scan to determine cerebral blood flow. The most common of low-tech tests used by neurologists would include shining a light into a patient’s eyes to see if their pupils react and turning off the ventilator while placing a mirror in front of the patient’s mouth to see if they are breathing (brain dead individuals cannot breathe spontaneously). To read the complete clinical requirements outlined by the committee, click here.

An Individual Patient: Jahi McMath

Her family and especially her mother, Nailah Winkfield, believe she may still recover, Christopher Dolan, an attorney representing the family, told the Wall Street Journal. Yet the hospital has already informed the family that the girl is brain-dead and so intends to remove life support as she is officially dead under California law. After Winkfield sought a temporary restraining order, Judge Evelio Grillo of Superior Court, Alameda County, issued one and asked the parties to agree on an independent neurologist to review the brain death determination. This independent report will be used to determine whether to lift the restraining order. Meanwhile, the hospital’s doctors continue to affirm that the girl’s entire brain, including her brain stem, has stopped functioning. Many people believe this particular case is similar to Terri Schiavo, whose coma was diagnosed as a persistent vegetative state. Yet this case is different because in the case of persistent vegetative state, a patient's brain may continue to function, even if they lack consciousness; in such cases, doctors concede that recovery may be possible. (Ultimately, Schiavo died after courts decided her feeding tube should be removed.)

In McMath’s heart-rending case, perhaps her family and others who are emotionally involved should read the published guidelines for brain death in children. Within the pages of this somber document is a brief review of the current scientific literature, including specific results in situations where 171 children were diagnosed as brain-dead. Of these cases, 47 percent had ventilator support withdrawn an average of 1.7 days after the diagnosis of brain death. Of the remaining patients, 79 (or 46 percent) of those who did not have support withdrawn suffered cardiac arrest an average of 22.7 days later. The remaining children died by an unknown cause (five percent), or they made either an incomplete recovery (one percent), or a complete one (0.5 percent). A review of the records for surviving children indicates that they had never really fulfilled the accepted medical criteria for brain death.

Painful though this may be to accept, brain death when correctly diagnosed by the current guidelines appears to be an accurate predictor of bodily death, whether or not ventilator support continues or is withdrawn. If an independent neurological review substantiates a verdict of brain death, Jahi McMath's mother may only be prolonging her child’s suffering, as well as her own, by continuing to fight for life support.

Source: Nakagawa TA, Ashwal S, Mathur M, Mysore M. Guidelines for the Determination of Brain Death in Infants and Children: An Update of the 1987 Task Force Recommendations. Pediatrics. 2011.