I fully intended my first blog post of the year to be upbeat and full of promise for the new year. However, I am so disturbed by the events taking place in Oakland, CA, and the confusion over the situation that I felt compelled to write about death today, when my first "to do" of the new year popped up as "write blog post."
Can you define death?
Or do you feel that is a preposterous question? Afterall, we know it when we see it, no? Could there ever be a situation in which a person was dead, but didn't look dead?
That is exactly the scenario that is playing out in a critical care unit at the Children's Hospital in Oakland. I have no firsthand knowledge of the situation, but as a pediatric intensivist I have been in what I believe to have been similar situations many times during my own career. They are always tragic. They are always painful for the family as well as for the staff. They are always fraught with the potential for mis-information and problematic communication. Adding the legal system, freelance and syndicated journalism , and widespread conjecture can make the situation, which should be dealt with privately and with profound respect for all parties, a stressful, lose-lose situation at best.
My heart goes out to the family of the little girl, as well as to the physicians, nurses and other involved staff at Children's Hospital Oakland. They are all trying to do the right thing.
Let's see if we can understand what might have happened. Jahi McMath, a 13-year old girl apparently underwent a "routine" tonsilectomy and two other procedures to try to improve her obstructive sleep apnea. According to news reports, at some point following the surgery she started bleeding from the surgical site, developed a cardiac arrest, was resuscitated, and placed on a ventilator to help her breathe. On December 12, about three days later, we heard news reports that Jahi had been declared "brain dead."
Declaring a person dead by brain death criteria is not done on a whim or without guidance.
Being brain dead is NOT the same as being in a coma or a persistant vegetative state.
A brain dead person cannot breathe on their own to maintain oxygenation of their organs without the use of a ventilator. They cannot hear, speak or blink. Their pupils do not respond when a bright light is shone on them. They do not have purposeful movement to painful stimuli.So why does Jahi's heart keep beating? Why does she seem to her mother to be "alive?"
Did you ever dissect a frog in middle school or high school? A frog may have it's head removed from its body and its heart can continue to beat as long as it is receiving oxygen and has a blood supply. A frog's muscles will twitch if stimulated in such a way as to create a spinal reflex and naughty boys in our science classes would make the dead frogs "dance" by creating different ways to stimulate them. But they were not alive. And would not come back to life, no matter what.
I am not for a moment equating Jahi with a frog, but to some extent, the physiological mechanisms are the same.
We hear that her dear mother, keeping vigil at the bedside believes her daughter to be showing signs of life when she sees a movement of a leg or an arm, but the hospital has defined these movements as "spinal reflexes" which may be sustained in the deceased as long as the spinal cord continues to receive an adequate blood supply. But a brain dead person has no capacity to know that they are moving, or to control that movement--that would require that her brain had some ability to function. Sometimes there is also random activity along the nerve that goes to the diaphragm. When that happens it can even look like a person is having spontaneous breathing. So how can you tell the difference?
A lot has been written in many of the reports I read about the different tests that have been used in Jahi's situation. However, in the majority of states in which brain death is recognized, and in the guidelines for declaration of brain death in infants and children  published in 2011 by the American Academy of Pediatrics and the Society of Critical Care Medicine, those tests take a second to the clinical situation and the all-important clinical exam. Specific tests are used to confirm the diagnosis made by one (or usually more) experienced clinician(s). In my fellowship training, much emphasis was placed on learning how to do such an exam with care, compassion and absolute reproducibility. The same is true for those I helped to train in pediatric critical care. The declaration of brain death by clinical criteria is a competency that must be achieved during one's fellowship training.
So the examination is precise, and has been described in many medical sources. but even more importantly, is the setting in which the evaluation can be performed.
- A known incident or event (head injury, cardiac arrest, etc).
- No significant drugs on board that could create the impression of brain death (such as being under anesthesia or in an induced coma)
- Body temperature appropriate for the environment--not being actively cooled (a technique often used following cardiac arrest).
- The head has be be situated just so, and an apnea test is performed as part of the bedisde evaluation. During that portion of the clinical exam, the ventilator is disconnected or turned off, and blood gases are obtained. If the level of carbon dioxide rises beyond a certain level,. but there is no organized breathing, the person is said to have "failed" the apnea test. Sometimes a complete apnea cannot be performed because the individual's heart or blood pressure won't tolerate having the ventilator stopped for even a few minutes. Sometimes the test can take a long time, because often without brain function, there is very little carbon dioxide being made by the body.
Additional testing, if needed, generally includes an EEG (otherwise known as a brain-wave test) and an evaluation of blood flow going to the brain. There are very specific guidelines used by neuro-radiologists and pediatric neurologists/neuro-encephalographers to confirm the diagnosis of a clinical declaration of brain death. CT scans and MRIs, although often performed in children who eventually become brain dead, are not specific enough to be used for this purpose. They may be helpful early on to help plan treatment of a specific issue, or to explain some of the underlying process.
Although we do not know details of Jahi's case, and because the hospital is prohibited from discussing the issues with the press due to privacy concerns for the family, I believe, that the appropriate evaluations and tests were done, and that Jahi is truly brain dead. Because this is a familiar term to me, and because I have seen many many brain dead children, I understand that she is also truly dead--she will not EVER return to a living state.I also believe that once a person has passed away, we should treat them with dignity, and not prolong the state of limbo that this child's body is now in.
On the one hand, I am glad that this "case" may further the understanding and the conversation in our nation about the nature of death and dying. ON the other I am woefully distressed that our society is still in this state.
I am distressed at the suffering the family will endure as every day they hope and pray she will wake up. I am equally distressed at the impact on the bedside staff, especially the nurses who are with her constantly. They KNOW that this child has passed away. Yet they cannot grieve for her passing, or help the family grieve, because they are being forced to do what they know is unethical, immoral, and futile.
There has been outrage in some areas due to the fact that the hospital has reportedly refused to allow anyone to operate upon Jahi's body to place a tracheotomy tube (for the ventilator) or a gastrostomy tube (for feeding). I can almost feel the pain that this is causing the physicians and the administration. Is it really a big deal? If she is dead, then she can't feel pain, so why would they object? Wouldn't it be easier for the hospital to just give in, let the surgery be done, so the problem could go away, and she could be transferred somewhere else?
Because it is simply not something that any of us would be comfortable with doing. Because it is WRONG.
Jahi's death certificate will indicate the date she was declared dead-I am assuming that is December 12, due to the news reports. That is the day her body should have been allowed to be treated with the dignity it deserves, the final prayers should have been said, and the appropriate death rituals performed.
I know that many of you will disagree with me. I have written this to try to provide some clarity, based on my own experience and knowledge, about a very difficult situation and a complex topic in medical ethics. I have tried to help you understand. So if you still have questions, let me know.
Flowers: http://www.flickr.com/photos/walkadog/3292434691/ 
Frog brain: http://www.flickr.com/photos/lapolab/4219041554/