Thursday, January 2, 2014

The Tragic and Heartbreaking Case of Jahi McMath

According to assorted news accounts, little 13-year old Jahi McMath was afraid she might not wake up after her tonsillectomy at Children's Hospital Oakland on December 12th. As it turned out she did wake up and also got to eat a popsicle (the sort of fare patients are able to eat) for a half an hour before something went amiss.  In this case, she began to bleed profusely from her nose and mouth to the extent her visiting mom had to get cups to catch the blood and nurses had to be called in. Transfusions were prepared but they weren't enough to save the little girl who shortly thereafter went into cardiac arrest and then experienced brain death (as determined by EEG signal).

Make no mistake that even a "routine"  tonsillectomy is no walk in the park.  I had one in 1978 at the age of 31,  after repeated bouts of tonsillitis going back to my childhood. 'Enough was enough' as they say. I was fortunate to have one of the best ENT  surgeons in Barbados, but even so the blood loss after I emerged from anesthesia was significant. As I came to in the ICU I saw and heard nurses screaming at me "No! No! Don't spit up the blood!" They were referring to how it was collecting in my mouth and my  instinctive reaction to spit. The alternative was to swallow it and block my breathing passages. However, spitting wasn't the solution as it risked bursting the sutures. (Bear in mind I was still under the influence of the anesthesia).

After some hours the bleeding stopped and I was able to eat a small cup of vanilla ice cream, but could only make hand signals and write on note paper to communicate to my smiling wife.  I wrote:


But let us understand that despite over one hundred media reports, Jahi McMath did not have an ordinary tonsillectomy.  In this case, we have yet another instance in which our corporate media dropped the ball and either believed the actual operation was too complex for the public to grasp (disrespecting the intelligence of their readership) or they deliberately misrepresented it  as a "routine tonsillectomy"- for whatever reasons.

According to Brandon Peters, M.D. at

“There is a paucity of known facts in this situation. The family and their lawyer have released few specific details. Oakland Children’s Hospital, bound by the privacy restrictions of the Health Insurance Portability and Accountability Act (HIPAA), has offered even less. Jahi underwent three surgical procedures for the treatment of her sleep apnea. This included a tonsillectomy, uvulopalatopharyngoplasty (UPPP), and removal of nasal turbinates. Though initially described as a “routine tonsillectomy,” this degree of surgery in children is not routine. It is extensive. When performed on a child, the risk is high. “

Readers can see more here and on uvulopalatopharyngoplasty (or “UP3″) and its indications and further information on the associated risks here. It should be apparent that with the paucity of facts available it is  too early to begin speculating what went wrong in Jahi’s case and what kind of medical negligence - if any-   might have been involved.

What does seem clear is that brain death has occurred and according to California law this qualifies as actual expiration. The technical term used is known as a permanent vegetative state, or PVS. It means basically that when the patient is hooked up to an electro-encephalograph (EEG)  no brain activity is registered, or recorded.  The person, for all practical purposes, is a vegetable and there is no going back to any normal state. The only way the person can be kept alive is by extreme life support systems, e.g. respirators.

The PVS state is not to be confused with being in a coma. A statistically significant number of people have come out of prolonged comas, but no human in recorded medical literature has ever returned to functional consciousness after being in the PVS state. It is right here where the debate over Jahi's future care resides, especially after a California judge extended until Jan. 7 a deadline for letting the hospital turn off the machines oxygenating Jahi's body. 

Jahi's parents are fighting to keep her sustained as they believe she is still alive on account of sporadic motions when they're with her. But as medical specialists have pointed out such nerve responses don't prove functional consciousness. Despite that, the family has its staunch defenders.

Wendy Patrick, a prosecutor and a working minister who is versed in the theological and legal arguments of the debate, has said the issue is particularly pointed because of the number of cases over time in which individuals have "revived after being declared dead".  But let us again bear in mind those were medical errors since no one can return after being literally dead or brain dead. In those cases then, the "declarations of death" were premature and the person wasn't really in PVS.

Patrick went on to cite a 2007 case in which an Arizona man "came back to life after being scheduled to have his organs removed for transplant. And of course, all Christians know that Lazarus was raised after four days in the grave.”

But again, this is nonsense. No one comes back to life after being genuinely dead, and we know the Lazarus story,  like most biblical accounts, was a myth - designed for spiritual inspiration not factual ingestion.  Can a person in a coma return to consciousness? Of course! But this is not the same as "returning from the dead".

What is needed then, is a final determination of Jahi's condition by medical professionals in the field of neurology, neurological function and PVS. 

Interestingly, even the more educated religionists believe this case is closed. According to the Rev. John Paris, a professor of bioethics at Boston College:

She’s already dead but he (the California Judge) is  hoping her heart stops so then the family says, ‘Well, the heart stopped and we accept God’s will,"

Father Paris is  also doubtful that an appeals court would step in, because "there's no legal issue." In other words, once medical agreement is that the girl is in the PVS state, it meets the California definition of legal death.   The divergence of opinion in Jahi's case, says Fr. Paris, should force greater legal clarity about what constitutes death. 

Indeed. But PVS is certainly a pretty clear condition once the EEG is properly interpreted and there is confirmation.

The last hope for Jahi McMath to be kept on a ventilator (past Jan. 7th)  may come from a former Long Island hairdresser who runs a brain-injury treatment center dedicated to Terri Schiavo, the Florida woman whose case sparked a fierce nationwide end-of-life debate lasting almost 15 years and which was final resolved nearly a decade ago. (On Tuesday,  the Terri Schiavo Life & Hope Network said publicly for the first time that it has been helping Jahi's family for weeks to find a place to transfer her.)

Meanwhile, the news of Jahi's  possible transfer came as the California Department of Public Health confirmed Tuesday it is investigating Children's Hospital Oakland and its handling of the Oakland 13-year-old after her tonsil surgery and two other procedures to remove throat and nasal tissue, complications from which left her brain dead.

Let's hope that no other family has to endure such a medical and ethical morass engendered by assorted advances in medical technology, i.e.  in maintaining life while pushing our boundaries – moral, legal, and practically – of the concept of death.


Zed said...

Unfortunately, your article equates persistent/permanent vegetative state with brain death.

These distinctions are confusing for the public and even many physicians. Since this confusion is one reason why patients' families have difficulty understanding brain death, I wanted to write a quick note for those reading this blog.

Brain death is the irreversible cessation of all brainstem (which controls breathing and basic head movements) function as well as the rest of the brain, in which there is no blood flow or electrical activity at all. Brain dead patients like Jahi McMath cannot breathe on their own and have no hope of recovery. They are dead and their organs have begun to fail.

Patients in a coma are unresponsive and appear asleep. More specifically, coma is a sate of "unarousable unresponsiveness in which the eyes remain continuously closed and there is no understandable response to environmental or intrinsic stimulation." Patients in a coma often either die or improve to the vegetative state.

Vegetative state (VS) patients also do not respond to the environment. They can, however, open their eyes spontaneously and their EEG recordings show sleep/wake cycles. They often have functioning brainstems that allow for breathing on their own.

Importantly, VS patients can very rarely improve to better function (minimally conscious state or higher with some response to the outside world), but we don't have a way to predict whether this would happen with certainty.

Consequently, many patients in VS are taken off of life support when their chance of recovery is shown to be poor. Terri Schiavo was an example of low-level VS.

A good resource can be found here if you're interested in learning more, this website might be a good place to start:

Copernicus said...

Thanks for your clarifications and further distinctions between these states!

Blog readers are advised to go to the link referenced to enhance their knowledge of the VS state vis-a-vis 'brain death' and coma.