Jahi McMath: Poster Child for Medical Futility, or Scapegoat?

I periodically check for news updates on Jahi McMath, and today I found this news report that suggests that Jahi McMath is still alive, or at least that her heart is still beating, more than two months after she was declared dead on the basis of "brain death."

Based on the commentary on previous posts here and on PCCMcentral.org debating this issue, I can say the following:

1. Jahi McMath is legally dead on the basis of an incontrovertible and unequivocal diagnosis of brain death.  I have no doubts in this regard.
2. Jahi McMath has a beating heart and thus is not considered to be dead on the basis of the intuitions and opinions of her family and some others.

You may choose #1 or #2 above.  I personally don't care how you choose.  But I'm interested in the differences in reasoning and opinions among those who choose #1 and those who choose #2.

The Girl is Brain Dead but the Emperor Has No Clothes

Oh, my, what a predicament.  Jahi McMath has been released from Oakland Hospital to the custody of the coroner and her family.  She has been issued a death certificate.  And she's being transferred to an undisclosed care center, where it is hoped she will begin receiving artificial nutrition.  This is the height of both irony and tragedy.

The comments by physicians and bioethicists in the CNN articles all harken to the idea that there appears to be no error, she meets criteria for brain death and thus she's "legally dead."  This misses the point.  Her parents don't care if she's "legally dead."  The legal definition does not comport with their own intuitions about death and her mother says as much.  She will accept that her daughter is dead only when her heart stops beating.  I can understand why a person may take this stance.

Real (Cardiac) Death and Invented (Brain) Death: The Oakland Case

This article in the January 4th, 2014 New York Times reports on the tragic case (the "Oakland Case") of a 13-year-old girl who suffered complications from elective surgery in early December 2013, whose condition deteriorated and who has been declared brain dead.  While it is not articulated directly in the article, her parents appear to object to the medico-legal conceptualization of brain death and they wish to force the hospital to continue to provide care for her.  A judge has placed an injunction against the hospital, prohibiting them from removing her from life support (in this case, this most likely means mechanical ventilation) until Tuesday January 8th, 2014. The medical establishment at the hospital where she is/was a patient has clearly taken the path of defending the concept of brain death and their rights and responsibilities under the laws concerning brain death -they have refused to insert a tracheostomy or a permanent feeding tube into the girl - and they may have, and we may be tempted to, ascribe her parents' behavior to anger, grief, bereavement, etc.  But I think this case illuminates some broader issues about bioethics, brain death, and organ procurement.

For those unfamiliar with the medico-legal definitions, brain death is a diagnosis that is made after severe brain damage from a variety of insults.  It is a very specific diagnosis that is based on a host of physical examination techniques and sometimes corroborating diagnostic studies, and it means that there is evidence of irreversible cessation of ALL brain function that has been caused by total lack of blood flow to the brain.  A patient who is declared brain dead is legally dead.  I have diagnosed brain death dozens of times.  The medical mantra is that, properly diagnosed brain death always means that there is NO brain function and that "real death" (that is, cessation of heartbeat) will inevitably ensue in coming weeks or months as the body cannot continue to  function without brain function.  But isn't this interesting!  That we need to reassure people that "real death" will inevitably ensue seems to reveal that we recognize that brain death is not real death, but that it will, after time lead to real death!  (Of course, all paths lead to real death, eventually.). Clearly this landscape is fertile ground for cognitive dissonance.  Let's explore why.