by Arthur Caplan, Ph.D.
You probably have heard or seen media stories in which a person is described as ‘brain dead’. What you may not realize is that these stories frequently present brain death in a completely inaccurate manner. They suggest that brain death is not death but is somehow a severe injury from which people can recover. This is obviously not true. Brain death is death. No one recovers. But the media persist in reporting brain death as some sort of preliminary step toward death.
The latest inaccurate brain death story exemplifying the problem with using brain death in public involved police-reform activist Erica Garner. NYPD Officer Daniel Pantaleo choked her father, Eric, to death three years ago after an altercation over the illegal sale of loose cigarettes. After that incident, widely seen on YouTube, Erica Garner became a leading voice monitoring and protesting police brutality.
Sadly, the 27-year-old mother of two suffered a massive heart attack December 24, 2017. Garner’s family told the New York Daily News that her doctors said Garner, had no chance of recovery having pronounced her ‘brain dead’. But she remained on life support. Her mother, Esaw Snipes-Garner, told the Daily News, “She’s not gone, she’s brain dead…physically she is still with us…She needs some time to heal”. She was not removed from life-support until December 30th.
Brain death is death. When it is pronounced, a short amount of time should be given to family and friends to say their goodbyes, and then life support must be stopped. In American hospitals death must be a bright line—nurses and doctors stop care when death comes.
Why would Erica’s mom and her friends be so confused about brain death as to think she could heal? One key reason she was she was very young and had little children. Acceptance of death is very tough for both family and providers in such tragic circumstances. Any waffling on the part of doctors with respect to declaring someone that young dead is going to be seized upon by a loving family not willing to let go. ‘Brain death’ is sometimes heard as just that sort of waffle. If doctors don’t say “dead” then the family thinks maybe there is still hope.
Another reason for denying death when brain death is diagnosed is that the press keeps screwing up stories involving brain death. They suggest brain death is bad but not the end.
Consider this headline from TV channel 17’s website in Nashville, Tennessee from December 29, “Man dies after beating by Nashville security guard left him brain dead.” The headline suggests that someone died after they were brain dead. They didn’t. They died as soon as brain death was pronounced.
Here is another misleading description from a New York Daily News story about the killing of a baby in Queens this summer, “An 11-month-old Queens boy is on life support and detectives are trying to piece together why the otherwise healthy infant is now brain dead.” The question is if the child is brain dead why is he still on life support? If you read that the brain dead are on life support in a hospital a member of the public could reasonably conclude they must not be dead.
There are dozens more stories from 2017 making the same mistake–a patient is pronounced brain dead, then, if things don’t go well, later you may die. Your loved one is brain dead but the hospital still has them on life-support so they must not be really, truly dead.
Brain death is not the same as a coma. It is not the same as permanent vegetative state (PVS). Folks in those conditions are still alive. The brain dead are not.
Medicine needs to avoid the misperceptions, false hope and unnecessary costs associated with brain death. Doctors should not tell families someone is brain dead—they should say dead. If life-support is still maintained it needs to be explained that this is to give the family the option of organ donation. No family should be able to insist on ICU care for the brain dead anymore than they would someone pronounced dead due to cardiopulmonary failure. And the media must not be given any reason to produce headlines or stories that suggest brain death is anything other than death.
There is nothing crueler than offering hope to families for recovery when no hope exists. It is time for doctors and nurses to stop using brain death when pronouncing anyone dead. Brain death is a technical term for diagnosing of death, not a synonym for death. Educating the public and the media about brain death is futile. Time for death to speak its name.