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

Great blog post

I truly believe that part of the reason why this family cannot accept their loss is because of the events surrounding the little girls post op course. They have no trust in the staff of the hospital and their recommendations because of this. While we all love a good story of a patient of ours recovering from a horrible illness. Brain death is something that you CANNOT recover from. I have been that nurse that you speak of, caring for brain dead children knowing anything and everything that I do is futile. In those instances the family becomes more my patient. Helping them through their stages of grief. The Oakland Children's story angers me. It's not the family or the hospital. It's the media and the lawyers who are inflating this issue and giving the family false hope. Parents will always cling to the good news rather than accept the truth. There should be a law for gag orders in every case having to do with brain death. I would love for the judges involved in this case to come shadow a nurse caring for a brain dead trached and g-tubed patient. A result of their unwarranted involvement. Perhaps then their rulings would be more compassionate.

Re: Great blog post

Michelle, thanks so much for taking the time to add your comments. I understand your anger, but maybe there is a silver lining. Although some of the media coverage seems to be fostering the adversarial relationship between the hospital and the family, it is also raising public awareness of this issue. Perhaps some members of the public have read this blog post or others like it (there have been some very good explanations and editorials written--I will try to collect those and put in links for others to find more easily) that also try to describe the differences between death and dysfunction of the brain. I am encouraged that at least some of the vehemence is slowing, and even some of the TV news casters seem to understand that the parents are being unrealistic. It will come. Perhaps during our working lifetimes, but it WILL come.

Thanks again for stopping by, and for taking the time to leave your comments.

Excellent Lay~Explanation of Brain Death

Thank you for such a lovely, eloquent and compassionate explanation of brain death.

Hopefully, one discussion that will arise from this case is dying with dignity and the acknowledgment of the fine line between prolonging life vs postponing death. This article is and ideal vessel for such conversation.

Sincerest thanks ~ S

BSER

This test will determine if the Brain Stem is alive. If it is dead there is little hope of recovery.

BSER

This test will determine if the Brain Stem is alive. If it is dead there is little hope of recovery.

Thank you Alice. As a young

Thank you Alice. As a young attending, I also cared for a child who was brain dead from meningitis. The parents refused to allow us to remove life support and the Ethics committee became involved. They supported the parent's wishes to continue all care, including CPR when cardiac death occurred. It was another three days before cardiac death occurred and, as anticipated, CPR did not bring back her heart. Here I am, 14 years later, still remembering the pain I felt as a health care provider continuing care on a dead child, with an ethics committee supporting the false hope it gave this family. My only comfort was that she did not feel the pain, because she was dead, of the continued needle sticks for lab draws and IVs and the intense pain of chest compressions. I recall the torn feelings all of us on staff had and how difficult it was to care for this child.
Those in the PICU and NICU very much want to save children. However, when we realize we cannot, many of us feel our duty then is to give the child and family a good death, an experience that starts the healing process. As I read your blog and other FB postings friends have posted, I realize that "good death" is also healing to the staff, so that we can keep working with children who may die and so that we don't burn out and stop working in these areas. It would not surprise me if there is a significant staff turn over in that PICU following this event.
One issue you did not touch on was the healing benefit this family could gain by "keeping her alive" as an organ donor. I have seen many families and staff over the years who have been able to process the pain of a child's death by seeing the benefit those organs gave to save another life. If we do not recognize brain death as death, we lose the ability to transplant many organs.
Thank you for speaking up about this situation.

Re: Thanks you Alice..

Thanks for leaving your comments, Virginia. We all have those poignant memories and physical pain from similar experiences.

I did not mention organ transplantation because I believe it can also muddy the waters. Folks who are suspicious to begin with will just see the request for potential organ donation as another reason why the hospital would be "pushing" for this child's death. While some parents are able to deal effectively with the fact of their child's death and are looking for a way to allow others to live, some find it a macabre request, and may become even more strongly adamant in their refusal to accept what has happened.

My personal approach to the death of any child for whom I was caring, whether by cardiac or brain criteria was to treat the family in such a way that they would have the ability to look back on the experience and find something good. Becoming an organ donor is often that opportunity, and I, too have often heard back from families many years later about how rewarding it was to know that even in death their child was able to help someone else. I fear this family will not be able to know that feeling. I hope and pray they will have some positive memory, and will be able to move on at some point in the future.

Wonderful article

I'm also a career-long PICU nurse, and now nurse practitioner, and I so appreciate everything you wrote. This has been an upsetting case for our entire pediatric critical care community, and I have been thinking of the nurses, doctors, and other employees at CHO daily. I cannot imagine the moral distress so many of them must be going through. I've also had involvement with CHO in the past and know what a wonderful institution it is. They must be devastated at this event, and how it has unfolded. I would love to hear from the judge at some point, what his rationale was, because if he had never granted the family a "stay" from removing the ventilator, we would not have this situation. So that is very difficult to understand. I'm sorry the family cannot see their way clear to let her go. It was a sudden and unexpected death, and I know it's heartbreaking for them, but not listening to multiple experts and accepting her death, is only going to bring more heartbreak for the future. The one good thing that may have come out of this is the national stage for the medical and bioethics community to provide education and information, and move towards a more clear definition of brain-death. As one medical ethicist said, perhaps we should just call it "death." Thank you Dr. Ackerman, for this excellent article.

Re: Wonderful article

Thanks so much for your comments. I agree that we need to just call it "death" and stop making a distinction. In fact, when I have to tell parents that their child meets criteria for brain death, I usually just start by saying: "I am so sorry, but Johnny has passed away" or something similar. Generally we have a few days to prepare the family, and hopefully by the time that we are at a point of declaring death, they usually know all the facts. I generally have had them standing by while I have examined the child, and have educated them as to what it all means. 

Yes, death is hard to accept, but it is final. 

I also agree that CHO is a wonderful institution.

Trust; parent/family bond with MD, nurses.

After 33 years in a Baltimore NICU, I see how more readily EOL dialogue CAN and DOES occur between the medical team and family when there's been a solid, trusting relationship established on admission; positive outcomes seem more likely. (NOT quickly and not always, but more likely.) A lack of trust probably led this event to a tragic spiral down. A semi-elective, routine surgery (probably by a trusted surgeon,) that ends in death would surely shake my faith and trust in the team caring for my daughter. It would take a substantial amount of time and effort for me to regain the degree of trust needed to consider the medical team's plan of care. It would take HOURS at my daughter's bedside with one very skilled and effective, intensely patient, and attached! MD or nurse to enable me to even BEGIN to believe my daughter's diagnosis. I would need TIME (a lot more than 3 weeks,) and EXPERT intervention from a highly trained team specializing in EOL care and bereavement counseling. I would need to hear the prognosis repeatedly, clearly, and unambiguously; maybe for months. I would like to think that if I felt cared for and supported, if I knew that my daughter and my family had your sympathy and your true concern, that I could agree to your plan of care. I say this as a mom. Now the flip side........as a NICU nurse I am often burdened by the lack of EOL dialogue in my NICU. A consensus is not often reached; futile care can be extended for months and is often escalated even with a futile diagnosis. Suffering is real; it comes at a high cost. Outcomes generally end in death after months of artificial life support. An ICU is unfamiliar, the experience is unwanted, the language is not understandable. It takes a skilled practitioner and a familiar team to move a family along this impossible course. While it is not intentioned, I often feel any failing is the fault of the medical team, certainly not the family. Complex stuff; lots of greys, not so clear.....(Sure, brain dead is brain dead but, in this case, who determines the constraint of time?) We need to be as competent in and as committed to EOL dialogue and care as we are with drips, rates, pressures, rounds, and values. Good will to all privileged enough to be a part of this experience.

Re: Trust...

Thank you so much for your comments. The greys are so important in the work we do, aren't they? Thanks for adding your perspective to this conversation. I have had folks tell me they are learning as much from the comments as from the initial post, and for that I am very greatful to this community of care-givers who have shared their experiences, their opinions and their concern.

Thank you for verbalizing the discomfort I have been feeling

Alice, Thank you for explaining so clearly the discomfort many of us Pediatric professionals have been feeling since this tragic situation appeared in the public media. Our mission is to serve the living and to try to preserve life. We are not trained to serve the dead. Our efforts must be directed to areas where we have some opportunity for success.

May I put the link to your blog entry on the listserve for the AAP Section on Administration and Practice Management?

Re: Thank you...

Bill, I would be honored to have the link on the section website. This situation is going to define the conversation in bioethics for years to come. The more we educate and the more we discuss the better.

Thanks for stopping by

Insightful Info

I am not a healthcare professional and have never been personally involved in a situation like this. I found this to be very informative. It gives me a better understanding of the situation, and it helps me see how unfairly the medical staff involved is being treated. They are being portrayed as cold and uncaring when that is the farthest from the truth.

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