What is death?

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.


Photo credits:

Flowers: http://www.flickr.com/photos/walkadog/3292434691/

Frog brain: http://www.flickr.com/photos/lapolab/4219041554/

Comments

outstanding comments!!!

Thank you so very much for writing this. It is a truly outstanding set of comments on a terrible situation. As you point out, there appears to be much less consensus regarding brain death as one might imagine.

Thanks so much for stopping

Thanks so much for stopping by, Rich, and for your kind comments. As you know, SCCM will be in SF next week. We need to support our brethren who are embroiled in this unfortunate situation.

Thank you for your Blog

I had a conversation just today with my fellow Nurses in my ICU and we all agreed that an article with this exact information is what the family and the public needed from day one.... Thank you for stepping up and writing this I will share it with all I know. God bless the child and her family!

Informative Article

Thank you for this blog post. It is extremely informative and I am so glad you hit on the fact that ALL persons involved are distressed. You certainly don't want to see family agony like this persist indefinitely, especially when the family is furthering their own agony. It's also immoral for their attorney to continue the lie that she'll recover, continuing to daily give this family more false hope. It's tragic all around and I am certain, based on news reports, that the family's unwillingness to see reality will continue the agony for many people involved. Last night, the girl's mother was on TV, smiling and laughing saying "we won today! We beat 'em today!" I'm convinced that for the family this has turned into an us versus them scenario while the entire time they've lost 100% sight of what's really happening here.

Given how truly informative this blog post is and how information like this has been extremely lacking, I highly encourage you to submit this blog post as a letter to the editor in the Oakland Tribune, San Francisco Chronicle, etc. This post seriously needs to be heard more here in our area. I live 20 minutes away from Children's Hospital and the media keeps calling this poor girl alive. The family even has marches in front of the hospital with hundreds of people holding signs saying "Keep Jahi Alive. I hope you will extend the reach of this very well written post. It needs to be heard. Thank you.

Informative Article

Thanks so much for your comments, Richard. This is just a tragic situation. I had not considered submitting the article for publication elsewhere but it might be worthwhile. I appreciate your support, and share your concern.

Excellent summation

Thank you for taking the time to write this. The entirety of this situation is terrible. I agree with the prior suggestion of an op-Ed piece. There's a considerable knowledge deficit showing in the media and in popular culture when discussing this sad sad case.

A couple more points to understand

As medical people, we often lack the ability to share key concepts with our patients. I would ask this one question. If blood was no longer flowing to the brain, would this family accept that she is gone? So many of the avg citizen just think that a brain being alive has to do with it's neurological conduction pathways i.e. electrical signals, that perhaps if we just shock it those brain waves will come back. It is so much more than this. I would suggest explaining more about this process and not just whether or not a person passed or failed a test. Also, I have read where many people believe the brain must still be alive because the heart is still beating. I think it is important to explain about the heart's own pacemaker and how it and other organs still function in spite of the brain being dead. My own mother was pronounced brain dead and it wasn't until many years into my nursing career did I understand that blood no longer flowed. This was a hard reality but one at the point took some doubt away from me which I still had. It was also, 10 plus years when my father asked "what if we had just shocked her brain, could we have gotten brain waves back?" We must do more to educate the public about what the term brain death truly means and does not mean. Great blog. Keep up the work. I am hoping that at least in her dying, this young girl will have sparked many important kitchen table conversations in our country.

Brain death

Alice
What a wonderful, thorough, and compassionate explanation of what is a tragic situation on a number of levels. I experienced the same "déjà vu" as you did when reading about what is happening at Oakland Children's having been through this too many times with too many families in my past career in the ICU. My best wishes for a resolution to this situation for both the family, the health care providers, and the child as soon as possible.

Re: Brain death

Braham, thanks so much for stopping by and for leaving a comment. Our pediatric critical care community has been working hard for so long to make these situations as gentle for families as possible, that it hurts so much to see the staff and physicians attacked as unfeeling, in-humane, etc. The entire staff will need support, long after the media has turned to the next catastrophic event.

Alice, I so appreciate your

Alice, I so appreciate your informative and well written article. I posted it on my fb page, especially for my non-medical friends. Brahm, so nice to see your name after all these years! I am still teaching and Coordinating PALS at Doernbecher, believe it or not. I hope all is well with you.

Re: Alice, I so appreciate

Linda, thank you for taking the time to visit and to leave your comments. And thanks for sharing on Facebook. Thousands of folks have read this post, and most have gotten to it through someone's FB page.

Thanks!

I agree with the comment to please submit this for publication in The Bay Area. I am an employee at Children's Oakland and this whole situation is extremely upsetting. It upsetting to have had this horrible outcome happen in the first place, and experiencing the national outcry against us is making a very bad situation worse. We are a children's trauma center plus we provide about 100 million / year to uninsured children, and so much more! We are taking care of our current patients with the same amount of pride and dignity that we always have, but the media circus, and the fact that this poor dead girl is still in our unit is starting to wear on everyone. Yours is the first article I've seen that mentions the stress this is causing the staff and more people need to see it. I am begging you to submit this for publication.

Re: Thanks

Thank you so much for writing a comment. I feel privileged to receive it.

I can't begin to imagine the distress the entire staff of nurses, respiratory therapists, pharmacists, social workers, housekeepers, physicians, administrators and all others must be feeling. Your's is a wonderful institution, and I wish I could come and personally shake everyone's hand or offer them a hug. Be clear in understanding that the pediatric critical care community understands a bit of what you are going through, and is feeling your pain. What the media does not understand is that your distress is being felt on behalf of the family, and out of concern for what is being done or being proposed to be done to the body of this child who has already passed on. As critical care providers, or as providers in any area of pediatrics, we always treat the entire family. We are compassionate to the point of feeling our little one's pains and worrying with their parents over their survival and future outcomes. You are not cold and heartless. You are doing your best. Keep on doing it, for that is the way to show the world that your critics are wrong.

Please let your co-workers know that you all are not alone out there. We know that this could have happened anywhere in any of our units. Don't give up, and don't stop caring.

A very insightful post

Dr. Ackerman:

I also encourage you to strive for the widest dissemination of this article. I've taken the liberty to pass it on to a number of correspondents of mine to stimulate supporting discussion.

I have faced the problem of explaining this situation to family members more time than I like to remember. It was never pleasant.

ck

BD

I am a senior consultant general surgeon in Delhi India,I have been following this story from the beginning,but this is the first time I have understood all the details explained so clearly .
Thanks.

Re: BD

Thanks so much for your kind words. I have done my best to make sense of this. I appreciate you taking the time to read and to comment.

No doubt that this is the

No doubt that this is the best written piece that summarizes this case out on the net right now.

I can't imagine the pain this family is going through. One thing that makes this case different is that this child went in for a routine procedure and the family expected their child back home and healthy after a routine stay. (As opposed to many of our brain death cases where the child had a severe trauma or cardiac arrest where brain death is often an unfortunate but "expected" outcome).

It would be interesting to see how this type of case would have played out here in NY or NJ where the brain death laws allow for reasonable accommodation of a family's moral objection to brain death. For example in NJ you cannot do a brain death exam without the consent of the family. In NY you cannot disconnect the ventilator or stop nutrition if a family has a moral or religious exemption to brain death.

Given that we have these laws on our books here one question that has often been posed to me is whether we are "obligated" to obtain the brain death diagnosis in a child who has severe neurologic injury or should we "look the other way" and not seek the diagnosis given that once you declare there's "no going back"?

Re: No doubt that this...

Mo, thanks so much for your comments. You are very kind. There was a case in NY a few years ago in which an Orthodox Jewish boy was in a similar situation. In his situation, the rest of his organs caught up with his brain before the court could intervene, so I guess it could happen again. I would imagine, however, that any individual physician could refuse to provide care, given that we are not ethically or legally required to provide "futile" care in most jurisdictions. So I am not sure how those two competing  issues would be approached.

I do agree with you in that the underlying situation of being healthy and going in for semi-elective surgery with no expectation that this could happen, has made the discussions wtih the family more difficult, and certainly has led to a problem of trust between the family and the providers. The conjecture I heard on CNN last night, that the hospital is wanting the girl to be dead because the medical malpractice suit will return a lower amount than if she requires "life-long" care is preposterous. Or that they have taken certain actions because the insurance company won't pay for treatments after her declaration of death occured.

Death

I would emphasize what you yourself have said before. When someone is dead, they are dead, by whatever criteria are used. If they are declared dead by loss of cardiac function, they are just as dead as by loss of brain function. It is unethical, and possibly illegal, to operate upon her. There are laws protecting the dead from such abuse. And by all means, find a way to submit this to an Oakland newspaper. See if they are willing to publish it.

Right on!

It's a shame the judge involved is too much of a coward or too ignorant and keeps feeding her family's delusion that she is going to "get better" or has some hope for a "miracle".

Re: Right on

Thanks for your comment, Jim

I am not so sure the judge is being cowardly. There are many ethical considerations in this case that may not be nearly as clear as our legal understanding of death. I am encouraged that the courts did NOT force the hospital to perform surgery or allow an outsider to perform surgery, AND that the coroner issued a death certificate. These things take time, for both society and individual families. While I would prefer the courts stayed out of it, we cannot fault any of the players in this situation for doing what they believe is right.

Thank you

As a PICU RN for over 28 years, I have found this case very sad and troubling. We have all worked with families that faced difficulty in accepting the Brain Death diagnosis. We have faced the questions (brain transplant, God will heal etc), but did not have to have it played out in public or the courts. My heart hurts for the entire healthcare team, hospital and even the family.

What I am most saddened about is the complete lack of understanding or plain ignorance that is being demonstrated on the "family" Facebook page related to Brain death, coma, and PVS. This article is one of the best and most clearly written that I have read and I think is written so that even "lay" people can understand. Sadly this case will have a negative impact on PICU's across the country for a while. Most of us still remember propofol and the Jackson case and how we had to address that with families.

To everyone at Oakland: We are with you in spirit

Re: Thank you

Thanks so much for your kind comments about my post, and your heartfelt support of the health-care team involved in this tragedy. Good works and daily "miracles" occur in all of our ICUs, but they are not always deemed newsworthy. In today's society with rapid sharing of situations through social media we all have to watch out for how rapidly the message can become distorted. Twenty-eitght years ago, when you were just starting in the PICU, this story would have had limited circulation, and we would not all have the opportunity (or obligation) to weigh in. I think overall its better THIS way. And maybe we can expand the discussion of EOL issues in such a way that the general public, law makers and legislators can understand. Thank you for your years of service at the bediside, or whatever role you may currently have in healthcare.

It's a lose-lose situation for all involved

As an ICU nurse myself I have seen this first hand (although I work with adults and not peds). It's devastating for the family because everything they define as "alive" still appears before them. Her body is warm, her heart is still beating and she is PHYSICALLY still there. It's unfortunate that the mother isn't hearing what is being said, I think it's her maternal instincts kicking in to protect what she thinks is there....she is in complete and total denial. I can not say what the ethical thing to do is, it's a very complicated case. It seems the ethical thing for the daughter would be to disconnect life support and let her body pass with peace and dignity. On the hand the ethical thing for the mother would be to have her fully on board with that decision.....and unfortunately those two paths may never collide.

re: It's a lose-lose situation for all involved

Thank you for your well thought-out comments, Christina. We are all suffering through this. The family, the staff, and those of us that can only imagine what is really happening. The saddest part for me is the lack of trust the family has in the healthcare providers, but I can understand how that might have occured. We all need a way to explore the moral distress this has created in our critical care community. Ongoing conversations and exploration will help to ease it some. Also, trying not to feel bitterness at the family, but rather reaching the point that we can see and understand their point of view even though we cannot agree with it. Thank you for being at the bedside for your patients and continuing to provide compassionate and empathetic care.

Finally, a very clear discussion of death

Wish you were in the main stream media. As a physician, I am amazed how quiet the medical professional organizations have been with this case. Their silence is deafening, being filled with lawyers and judges rulings setting back medicine to the dark ages. Again, thank you...

Re: Finally, a very clear discussion of death

Thank you so much, Michael, for your very kind comments. Medical organizations have processes and procedures to go through before they can weigh in on such an emotionally-charged situation. I know that many of the organizations I belng to are considering making a statement.  I am an individual and free to express my thoughts and beliefs on this blog, thanks to working for an open-minded and transparent healthcare system.

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