Just last month, there were two major developments reported on the controversial issue of brain death. One was an article about a lawsuit to revoke the death certificate of Jahi McMath, a California teenager who was declared brain dead 2 years ago but is still alive and apparently showing some signs of improvement.
The other was a December 30, 2015 article in Medscape, a website for medical professionals that requires subscription, titled “Not All Hospital Brain Death Policies Comply With Guidelines” . The article reports on a medical journal study titled “Variability of Brain Death Policies in the United States.”
Jahi McMath
Jahi McMath, a 13-year-old girl, underwent a routine surgery for sleep apnea in December 2013 at a California children’s hospital. That night she started bleeding and eventually her heart stopped. Her heart was restarted and she was placed on a ventilator to stabilize her condition, but soon the doctors declared her brain dead and prepared to remove the ventilator. However, the family insisted that the ventilator be continued, hoping that Jahi might eventually get better.
The doctors disagreed, insisting that Jahi was legally dead by brain death criteria. The parents went to court to keep the doctors from removing her ventilator but after a series of legal battles lasting weeks, a judge eventually gave Jahi’s family permission to transfer her to another facility that would continue the ventilator.
Virtually all the ethicists and other experts contacted by most media outlets condemned the family’s actions as denying the reality of brain death. In a January 10, 2014 USA Today article, ethicist Arthur Caplan, head of the bioethics division at New York University’s Langone Medical Center, criticized the judge’s decision for Jahi’s family, declaring that Jahi’s new doctors are “trying to ventilate and otherwise treat a corpse,” Caplan said. “She is going to start to decompose.”
Now, 2 years after Jahi was declared brain dead, her family is in federal court suing to revoke her death certificate because as their experts contend
A future ruling revoking Ms. McMath’s death certificate would be groundbreaking.
“Variability of Brain Death Policies in the United States.”
In this December 28, 2013 Journal of the American Medical Association Neurology article, a study was done of 508 US hospital policies on brain death determination.
Alarmingly, the article states that hospital brain death criteria requirements “are not 100% compliant” even with updated 2010 guidelines by the American Academy of Neurology which require only one examination to determine brain death.
And of the total 508 hospitals, the article states that only
“about a third of policies (33.1%) required specialist expertise in neurology or neurosurgery, but 150 policies had no mention of who could perform the determination. Many policies still allow for more junior physicians to determine brain death, the authors noted.” (Emphasis added)
Also disturbing, the article noted that some policies didn’t require testing of lower brainstem function (required for a finding of irreversible loss of all brain functions) with less than 80% of the policies requiring the absence of a cough reflex. Only 57.2% of hospital brain death policies required that oxygen be given to maintain oxygenation during the critical apnea test to determine if a patient can take breaths off a ventilator, even though low a low oxygen level can lead to more brain damage.
In an effort to reassure, Gene Sung, MD, past-president, Neurocritical Care Society, and director, Division of Neurocritical Care and Stroke at UCLA claims that he
agreed that there have there have been no documented reports of regaining function after a declaration of brain death. “But still, we don’t know for sure; maybe mistakes happened and they weren’t reported,” he said. (Emphasis added)
Actually, there have been multiple reported cases of people regaining at least some function after a brain death declaration such as Zach Dunlap (who fully recovered) as well as Jahi McMath.
If as Dr Greer, the lead author of the study, states “This is one of those diagnoses where we need to be correct 100% of the time”, must we not rigorously examine such cases to determine if or why there was a misdiagnosis to ensure that current brain death guidelines really hold up to scrutiny?
Besides the potential premature loss of lives, our medical integrity is at stake and we medical professionals must prove worthy of the trust society gives us.
nancyvalko 
You are such an incredible voice in the dark, Nancy.
Thank you for your vigilance and service.
Am writing from Ho Chi Min City about to begin the last 5 days of an extraordinary trip.
Tomorrow I go to the Mekong Delta to visit dairy development projects Tom and I and a group of friends are sponsoring the the next 4 years as one of Heifer International’s project.
I am eager for the experience.
xx, mm http://www.MarianneMuellerleile.com Sent from my iPad
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I think the variation in terminology and practice is potentially very difficult for both medical professionals and families. UK, Australia and I’m sure many many others have a single definition and a set testing criteria that all are trained for and adhere to. It’s a complex and deeply personal area for relatives and one we must strive to get right every single time
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Yes and no. I wish it could be as black and white as this study makes it out to be. I strongly disagree with its painting of medical professionals forced into having to make that decision as not being extremely careful and considerate. This sucks beyond compare when faced in the real world. And unfortunately, the worst part of this, completely overshadows what I feel is the true question of “meaningful recovery”. So often, there will be patients with a high degree of doubt of a meaningful recovery (some function of higher brain activity), that end up left in a near vegetative state due to families will push for heroic measures because they only can perceive live or die. The main example of the study in question lists a young person as intermittently following vocal commands after 2 years in a near vegetative state…that is not a person that can perform any kind of function for themselves, can not convey any type of personal desire (feed me, turn me, scratch behind my rt ear), and with the shear deconditioning factor is at high risk of mortality/morbidity from little events. Of course we need to know more and the process should be as streamlined as possible (what is ever 100% in medicine though?), but to in return be as black and white as this study makes some of us practitioners out to be, the sheer cost and ability both in providing care and a place (facility wise) to those that want to give their loved ones more than 2 years to recover the ability to squeeze fingers and not much else is unsustainable and a detriment to the care of others.
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Regarding “meaningful recovery”: As a young ICU nurse in the early 1970s, I cared for many severely brain-injured people in a coma, some of whom were diagnosed as brain dead using the new brain death criteria while others did not meet the criteria and were called “semi-comatose” if they survived. The term “vegetative state” had not been invented yet and “vegetable” was considered an offensive term, like the term “retard” is today. Most of these patients were eventually sent home or to an institution for care and usually considered “hopeless”. Almost no one received real rehab.
However, even back then, I talked to all the comatose patients because if it was true that hearing is the last sense to leave a person, I wanted to make sure that these patients knew what was happening when I cared for them even if they couldn’t tell me. I was ridiculed a lot until one patient I will call “Mike” who was in a horrific accident and initially comatose and on a ventilator, started to respond to me over time but not to his neurosurgeon who even used deep pain stimulation. I was shocked when the neurosurgeon used the term “vegetable” in front of Mike. Eventually Mike was discharged to a nursing home.
But to me and the ICU unit’s surprise, about 2 years later a handsome young man strode into our unit and identified himself as “Mike”. He said he had driven 60 miles to thank us for saving his life. We were stunned and delighted. Laughing, I told him that although he wouldn’t remember it, he would respond to some of us nurses but not to the neurosurgeon. Mike became serious and told us that he remembered the doctor calling him a vegetable. That make Mike mad and he refused to respond to the neurosurgeon! After that, all of our ICU personnel were told to treat every patient in a coma as though they could hear and understand everything. After that, we saw many more patients respond and some even recovered.
As medical professionals, we must counteract the all too prevalent attitude that it is better to be dead than disabled, and that such people are burdens to themselves, their families and society. True dignity is inherent in us all and is not extinguished by dependence on others. Recognizing this truth will not only improve lives and encourage medical advances but also prevent people being encouraged to die prematurely.
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