PHOTOGRAPH BY LAURA ODA, THE TRIBUNE VIA AP
Published January 10, 2014
Two tragic medical cases with the same outcome: patients brain dead and on life support.
For 13-year-old Jahi McMath of Oakland, California, brain death was declared in the wake of complications from surgery. Her parents have fought to keep her on life support, contending that the functioning of her heart and lungs indicates she is still alive. In Texas, Marlise Munoz, a 33-year-old pregnant woman, collapsed at home and was subsequently termed brain dead at the hospital, according to her family. She remains on life support despite family wishes to turn off the ventilator; the hospital says it is following a state statute that prohibits removing life support from a pregnant patient so as to maintain the viability of the fetus.
Despite their differences, these cases raise a common question: What does "brain death" actually mean?
National Geographic spoke to experts in neurology and in biomedical ethics to explain why the definition is central to understanding the controversies that have arisen in each instance.
What does it mean to be brain dead?
The commonly accepted definition of brain death-also referred to as death by neurological criteria-is "the irreversible cessation of all activity in the cerebral hemispheres and the brain stem," says Robert Stevens, associate professor of Neuroscience Critical Care at Johns Hopkins University School of Medicine.
Bottom line: "Brain death is death," says Richard R. Sharp, director of the biomedical ethics program at the Mayo Clinic. "Even among medical students and clinicians you will find misunderstanding. But from a medical and legal point of view, brain dead means dead."
Why is the term so confusing to so many people?
The term is a product of modern medicine, Stevens says, where machines (such as ventilators) can continue to provide oxygen even after devastating neurological injury. By contrast, in the past, neurological, cardiac, and pulmonary death would occur in close succession. In other words, once the brain is dead, the heart and lungs would soon stop functioning as well.
Today, however, "you can be brain dead, with an irreversible cessation of all activity in the brain," but because of the artificial situation of being on a ventilator, the heart is still beating. There may be reflex movements of the legs or the arms. "And the family members will say, This does not look they are brain dead." But they are.
What do you do to confirm brain death?
"We go to great pains to confirm that," says Stevens, and to ensure that there are no reversible conditions.
"There are very specific neurological tests at the bedside, and you have to go through those tests twice, six hours between the two tests in adults; 24 hours between the two tests for children."
Can people recover from brain death? There are stories that claim such reverses.
"There is no possibility of recovering from brain death," says Stevens. "Brain death recovery suggests a misdiagnosis. If you recovered, it was something else"-possibly a coma or vegetative state. Too often, people confuse those situations with brain death, says Sharp.
How do they differ?
"Coma is distinguished from brain death by the fact that you can elicit responses from the brain, detect movements in response to pain, and it is not irreversible," says Stevens. "You can wake up from a coma." The term vegetative state refers to patients "who have a severe impairment of consciousness but have progressed to a state where they begin to open their eyes. In medical speech we say that they have elements of arousal but there is no awareness." This condition also has the potential for reversal.
Do you anticipate any developments dealing with brain death cases as a result of these two patients?
First of all, says Stevens, both cases demonstrate the need for the medical community to do a better job of explaining what brain death means, to work closely with the families, and to "communicate in clear and unambiguous terms" what is happening and what needs to be done.
In addition, says Cynda Rushton, Bunting Professor of Clinical Ethics at the Johns Hopkins Berman Institute of Bioethics, "all of us in the medical community need to pause and reflect on what we can learn-how to provide care that is both compassionate and respectful but also that clearly communicates the limits of what medicine can and cannot do. And it's hard for all of us to accept those limits because we have so much promise in our technology, and we have become so seduced by it that we actually think that it can correct things that are not possible to be corrected."
Finally, the California case suggests the need for hospitals "to have a formal hospital policy in place to deal with a family's request for care after brain death has been declared," says Sharp. Such a policy would state how much time would be allowed for the family to grieve with the deceased family member or to find another place to transfer, he says.
What can you say to grieving family members to explain what brain death means and to help them decide whether to continue or cease medical care?
"These situations are tragic and are very emotional and very difficult for everyone," says Rushton. "And what we need to say is, first of all, we're really sorry that despite all of our knowledge and technology we weren't able to correct the situation, to intervene in that process. We weren't successful, and we tried our best, as did everyone. And everyone really does pull out all the stops to save a life-but when we're not able to do that, we have to be honest that we have not been successful, that the person has died. It's always hard to accept that death has occurred. And yet one of the greatest gifts we can give people is to help them navigate through that process with as much kindness and support as possible."
Here is a great radio show on the subject.
This article fails to differentiate between actual brain death and the declaration of brain death by a doctor. It is true that when the brain is dead it is dead. It is not true that every time a doctor declares brain death, that the brain is actually dead.
No one admits here that mistakes are sometimes made and even some doctors have motivation to declare brain death to get organs for transplant.
Doctors are fallible and some are not ethical.
And...if someone is in a coma for more than a year, is it possible to recover and live normally or will there be major brain damage? Or will brain death be most likely to occur then?
@Ari Marrero Normally, in a coma, the brain is not deteriorating if the body is receiving nutrition. A coma is not by itself a terminal condition.
I just want to know that what does this "irreversible cessation" means? i mean in terms of signal transduction/elelctrical impulse, that takes place in neurons is stop completely?? or what?? if it means that after severe injury there is no signalling what are the possible ways to recover back the activity of nerves?? please tell me that after the injury all the neuron cells of cerebral hemisphere are dead???
My sister-in-law died last June.Her death was completely unexpected.She was scheduled to come home from the hospital when she had a seizure and was readmitted.She died two days later.
Perhaps one day in the not so distant future modern medicine will find a way to recover from brain death, but until then sometimes it is better to let go, because the healing can begin once we let go.
What makes you YOU is your cerebellum....if you are brain dead, all that is keeping you going is a mechanical breathing machine called a respirator. If they believe in a miracle, then unplug Jahi & see if she continues to have a viable heartbeat & spontaneous respirations.
I seriously doubt this will happen, but I cannot say if God indeed will perform a miracle.
All I can say is the odds are not in Jahi's favor as her organs have already begun to die,
she will continue to get worse because her brain is not telling her body what to do.
I cannot believe the overwhelming denial the mom is in she must feel guilt about signing Jahi up for the surgery, so she doesn't want to know she killed her little girls so she drags it on until there's NO way that a cause of death related to the mother's actions (signing the consent for surgery understanding the risks of ANY SURGERY) will be able to be proved & the really sad selfish part is NO ONE is going to benefit from her death and that to me is the REAL tragedy & very selfish act on the part of the mother who feels guilty.....she could have been a heart donor, etc, there are so very many waiting and then the mother gets selfish/in EXTREME DENIAL, she needs a grief counselor & a couple of days worth of Valium.
I have never seen this kind of denial and it makes me think that money is deeply involved
and using her daughters dead body to achieve her goals is cruel & unusual abuse of a corpse. Almost to the point of DISRESPECT.
VERY upsetting to watch hope God does HIS WILL in this matter....NOT the parents'.
@Cynthia Knutson you have no right to judge Jahi's mother. you haven't walked a step in her shoes. Do you know how you will react if this was your daughter? As people we're so quick to judge when it is someone else's tragedy. If anything, pray for her mum and stop judging her.
Actually, there are a few cases in the literature over the last several decades of supposed brain death reversal – mainly in infants and fetuses (where you may still have an active neurogenesis niche) – none ever had positive long term outcome, but the papers do exists in PubMed if you look for them – and they are hotly contested amongst thought leaders – like this one – http://www.ncbi.nlm.nih.gov/pubmed/19818943 – And do keep in mind, the brain death diagnosis does NOT constitute zero cerebral activity as is commonly mentioned in the press – it is “no cerebral activity greater than 2 micro-volts” – most thought leaders in the space acknowledge residual “nests” of neuronal activity and residual blood flow do indeed exist in the brain dead – just not enough to support an “integrated whole person” – Since 1968 and the Harvard Ad Hoc Committee on Brain Death, the definition of death has remained static, in spite of 1) the major thought leaders in the space acknowledging that brain death is a process, not an event, and 2) the continued development of new technologies, including those of regenerative medicine – and on top of that, even in the year 2014 we really have no widely accepted idea on how memories are truly stored in the brain, and how much of the brain can be destroyed while maintaining identity – Ira S Pastor, CEO, Bioquark Inc. – http://www.bioquark.com – firstname.lastname@example.org
Google "Steven Thorpe case" and you'll find what is said here is not always absolute. In science, there is always more to know and discover. We don't hold all of the keys.
Desire for donor organs of young people can leave families and hospitals in limbo. Perhaps that is ethical question for such a heartbreaking, tragic outcome. This family has endured more than enough pain, and I embrace their suffering. Time will force their decision. Medical establishment perhaps should revisit ventilation criteria as it is obviously not always the best path.
Hospitals do not have desire for organs. Federal law compels them to ask and that is that. As for ventilation criteria FIRST they had to try to rescue Jahi (by getting her an airway) and THEN they had a few days time to establish that yes she was actually dead. We can't know until we try. The author of this article implies that we need to do a better job of explaining but sometimes (and this is rare of course) some family membesr just will not believe their warm "breathing" loved one is gone. It's called denial.
This article misses the point about the Texas woman. The State of Texas is forcing her to be kept on life support, the family wants to end life support. The family has accepted that she is dead.
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