The recent New Yorker article entitled “The Death Debate”, a review of the case of Jahi McMath 3 years after she was declared “brain dead” has sent tremors through the bioethics community on our campus and the country.

Jahi McMath, at age 13, had a tonsillectomy for disabling sleep apnea, with complications post-op that left her with anoxic brain injury and brain death according to the criteria used throughout the country.  Many in the palliative care community felt unease as we learned of issues like the apparent false reassurance by the staff, failure to listen to the family when her post-op bleeding became severe, the lack of an apology after she was declared dead and lack of understanding shown to the family struggling to understand brain death.

It seems that she met all formal criteria, according to multiple neurologists at the time her body was turned over to the Oakland coroner.  The family had Jahi airlifted to a hospital in New Jersey, which has an exception to neurologic diagnosis of death based on personal religious beliefs.  There, after receiving a trach and a feeding tube, her body stabilized.  She has been cared for by her family ever since.  Later this year, her body may be transported back to CA, where a trial would decide if she is indeed dead – a decision with financial and legal implications for Jahi’s family but also with potential far-reaching consequences for society’s understanding of what constitutes “death.”

The definition of brain death was created in the 1960s by a group from Harvard, who defined it as “irreversible destruction of the brain.”  The formal construct allowed relief from providing “futile” care to patients who would never recover, and conveniently opened the door for organ donation.  But the definition has been challenged as a “legal fiction” to this day.   Since our lungs and heart can be sustained through technologic means, those two organs don’t shut down along with the brain as they did synchronously before modern medicine intervened.  But the brain-dead body looks like the living person on life support to the observer.   And the natural course after declaration has rarely been studied.  It appears that Jahi no longer meets criteria for “brain death” as she has started to menstruate, more recent imaging has shown some scattered intact brain function and some observers (particularly the family) feel she responds to voice and music.  It may be that a child’s brain does not have the disintegrating trajectory that adult brains demonstrate after “death”.  But the “shadow effect” of this case, as Thaddeus Pope calls it, has been seen in an increased push-back, especially by minority families, to prevent hospitals from unplugging their loved ones diagnosed with “brain death.”

Earthquake?   Letting individuals define “death” places a huge burden on them to decide when to stop pushing for aggressive care.  Perhaps it will also push us all to consider whether biological “life” is even the right thing to consider as human existence.   The slippery slope cuts both ways – can we remove organs and cause death in neurologically devastated but alive people, and can people require biological support indefinitely for loved ones with minimal or no brain function?  Stay tuned.