Chances are, you have known an acquaintance, friend, or loved one who was declared brain dead. Brain death diagnoses are quite routine in hospital practice, but there is more to this medical term than meets the eye.
While brain death and biological death are both recognized as forms of legal death, their definition and medical basis are completely different from one other. According to standard medical practice, if you’re biologically dead, you’re dead. If you’re brain dead, you’re dead. Yet if you’re brain dead… you may not be biologically dead? It is neither irrational nor cynical for a cautious family to be bewildered by—and even skeptical of—this apparent dichotomy.
Texas Right to Life’s patient advocacy team advocates for families who wish to continue fighting for a loved one who has been victimized by a premature or erroneous brain death diagnosis or declaration.
Daniel* was one such patient. In 2022, Daniel’s wife called Texas Right to Life after a Corpus Christi hospital diagnosed Daniel as brain dead. He had been rushed to the hospital just one day earlier, yet already a bedside test, EEG, and blood flow scan had provided a “conclusive” diagnosis. Four days later, Daniel’s doctors issued an official declaration of death, only to retract it the very next day after a neurologist detected pupillary reflexes, a response incompatible with brain death. In other words, Daniel managed to become “alive” again in spite of 4+ tests presumably relied upon in daily hospital practice for their accuracy in determining when a person has died.
In 2019, we assisted 12-year-old Taylor C. from Waco, Texas, another victim and survivor of a premature brain death diagnosis that was later rescinded. 14-year-old Naomi T. has a similar story. Initially diagnosed as brain dead, Naomi’s family called Texas Right to Life and she is now receiving medical care in the safety and security of her own home.
Another high profile story occurred in 2013, young Jahi McMath from California.
The medical community may label these accounts as unfortunate or careless mistakes resulting in inaccurate diagnosis of the patient. But when the standard medical tests are employed by the appropriate medical professionals following accepted protocol, how many erroneous diagnoses really occur every day?
Most medical protocols include two parts to an ultimate determination of brain death: 1) a diagnosis of brain death; and 2) a declaration of brain death. If a patient facing a brain death diagnosis or declaration has not yet been declared dead, there is still some time to act. Here are some practical ways you can protect your loved one in this situation:
- Request more time. Appeal to authorities like the AAN or JAMA Neurology that support longer recovery times for brain injuries.
In 2021, we assisted a father who requested more time for his 32-year-old son. Although the hospital remained firm in their brain death diagnosis, they consented to allowing additional time, which ultimately provided the opportunity for the family to secure a transfer to a hospital in a different state.
- Ask, “Is there any activity or function anywhere in the brain, including the brain stem?” This question is critical. As reviewed in previous articles, Texas law mandates the “irreversible cessation of spontaneous brain function.” That includes all areas of the brain.
In 2020, Richard C.* was determined to be “definitively brain dead” based on the results of a blood flow scan. But when his mother specifically asked if there was any function anywhere in the brain, the doctor clarified that Richard’s brain stem still retained some spontaneous brain function, which enabled our team to stop the brain death declaration in its tracks.
- Request additional tests. Has a blood flow scan been performed? What about bedside tests? Are other ancillary tests available?
In 2022, Naomi T. was diagnosed with brain death after an apnea test and a bedside exam. Our patient advocate advised Naomi’s mom to request further testing, specifically more ancillary tests and another bedside exam. As tests were conducted, one or two doctors became less confident that Naomi was brain dead. Today, Naomi is alive and at home with her family.
- Consider refusing the apnea test. (See Article 3 of this series.)
- Insist that a board-certified neurologist explain the test results to you directly so you can ask questions and get answers. If this has been done and you are dissatisfied with the results, request a second opinion from a neurologist from outside the hospital system.
This article series should be provoking the question, “What would a life-affirming approach to severe brain injuries look like?” That question demands extensive research, and this article barely scratches the very muddled surface. But prominent authorities on the issue, namely the American Academy of Neurology and peer-reviewed medical journal JAMA Neurology, promote longer recovery times for patients with serious brain injuries. Centuries of medical research—and common sense—teach us that the human body cannot survive without the brain. Medical research confirms that absent any traces of brain activity or blood flow to the brain, the heart usually stops beating within about a week. Shouldn’t we be giving the injured brain more time to heal?
The concept of brain death emerged less than 55 years ago, and our medical community still has not reached a consensus on the proper protocol for reaching a brain death determination. To suggest that we may not have everything right is not preposterous.
If a patient has been diagnosed with “brain death,” the natural assumption is that the patient has passed away. But this debate is far from settled. Every day, families face the heart-wrenching dilemma of their loved one being declared brain dead…yet alive with a beating heart. If you find yourself in this position, fighting for the life of someone you love against a brain death diagnosis, know that our patient advocacy team is here to help. Ask questions and stay informed so you can be your loved one’s best advocate.
*Patient’s name changed
Al-Shammri S, Nelson RF, Madavan R, Subramaniam TA, Swaminathan TR. Survival of cardiac function after brain death in patients in Kuwait. Eur Neurol. 2003;49(2):90-3. doi: 10.1159/000068506.