On August 5, 2022, 53-year-old Hollywood actress Anne Heche was involved in an auto accident in a Los Angeles neighborhood and sustained a serious brain injury. Initial reports were that she was on a ventilator and in a coma. On August 11, it was reported that Ms. Heche was diagnosed as “brain dead.” Under California law a person diagnosed in this manner is considered legally dead.

However, Ms. Heche was left on a ventilator until her organs could be harvested. Subsequently, on August 14, after her organs were removed, the media again reported that Ms. Heche had died. You can understand why this was confusing to the public when in the matter of a few days there were two different reports of Ms. Heche’s death.

To help with this confusion, Dr. Michael P.H. Stanley, a senior resident of the Harvard-affiliated Mass General Brigham Program, published an article in the Wall Street Journal writing that although Ms. Heche remained on life support until her organs were removed, she was both “medically and legally” dead on August 11.

From its beginning, the term “brain death” has been contentious. It was defined in 1968 by a Harvard Medical School ad hoc committee that was formed to determine a new criterion for brain death, especially as it pertained to legally procuring organs for transplantation.

Neurologist and professor of neuroscience, Dr. Cicero G Coimbra, agrees. In a 2019 interview, Dr. Coimbra said that before the term brain death was used there was “no preliminary scientific research” to quantitatively define this form of death. This, he noted, opens the possibility of misdiagnosis and by labeling these patients “dead”, it has enabled the medical community to avoid the “legal hurdles” needed to remove “vital organs” from brain injured people.  According to Dr. Coimbra, in 2016 alone, the brain death/U.S. organ procurement business profited close to 25 billion dollars.

Regardless, Dr. Stanley supports the brain death diagnosis, as he stated in his WSJ article, “when the brain ‘stops functioning’ the person dies.” However, there are numerous scenarios that could have been cited where a patient was wrongly declared brain dead casting doubt on the finality and accuracy of the diagnosis.

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For instance, this past August 27, doctors told a woman named Megan Marlow that her husband was “clinically deceased” after he suffered “neurological death.” Doctors informed Mrs. Marlow that her husband, an organ donor, would be kept on life support until they could locate organ recipients. On August 29, Marlow received a call from the doctor — her husband was alive.

In March 2021, 18-year-old Lewis Roberts was declared brain stem dead after a road accident. Just before he was scheduled for organ harvesting, he began breathing independently. His sister said the medical staff “rushed through” her brother’s tests. Today, Roberts is well enough to play sports.

In 2011, 14-year-old Taylor Hale was in an auto accident that left her in a coma. Six days later, Taylor had a brain hemorrhage, with part of her brain sliding into her spinal canal. Doctors informed her parents that Taylor was brain dead and to consider donating her organs. The following day, a family friend prayed with Taylor asking God to spare her life. Later that day, Taylor was removed from her life support. Unexpectedly, however, she began to breath and a week later she started to speak. Incredibly, Taylor was able attend her high school graduation.

In 2008, 21-year-old Zack Dunlap experienced a catastrophic brain injury and was declared brain dead. Two months after this determination however, Mr. Dunlap walked out of the hospital.

Certainly, these types of neurological diagnosis are difficult and complex, especially when you consider the soaring cost of life-sustaining medical technology. But perhaps the simple truth is that when patients sustain severe brain injuries, precious time is needed so that treatment can be administered giving the brain the opportunity to heal instead of quickly determining that it is a hopeless and permanent condition, and that the person is ripe for the business of organ procurement.

Consider a July 2021 study published in JAMA Neurology, a monthly medical journal published by the American Medical Association, where UC San Francisco, Medical College of Wisconsin, and Spaulding Rehabilitation Hospital monitored close to 500 patients with “moderate-to-severe traumatic brain injury (TBI).” Researchers concluded that decisions regarding the withdrawal of life-sustaining treatment for these types of patients should not be made in the early days following brain injury.

Senior author of the study, Geoffrey Manley, MD, PhD, chief of neurosurgery at Zuckerberg San Francisco General Hospital said that:

“TBI is a life-changing event that can produce significant, lasting disability, and there are cases when it is very clear early on that a patient will not recover. But results from this study show a significant proportion of our participants experienced major improvements in life functioning, with many regaining independence between two weeks and 12 months after injury.”

The JAMA Neurology study follows a 2018 review by the American Academy of Neurology (AAN), updating their guidelines for disorders of consciousness. It was determined that current ICU practices are based on “flawed and outdated information.” The AAN recommended that for the first 28 days after a patient’s brain injury, physicians “must avoid statements” that suggest the patient has a poor or hopeless prognosis.

Complicating matters even more, Nancy Valko, a registered nurse for over 50 years, writes that Dr. David Greer, the lead author of a 2016 study from JAMA Neurology found that not all of the 508 U.S. hospitals surveyed were “100% compliant” with the American Academy of Neurology 2010 guidelines when determining brain death. The study also found that there were “major variations in their policies” when diagnosing brain death. These inconsistencies can be, according to Mrs. Valko, “disastrous” as one patient can be treated as “living” at one hospital but “declared brain dead” at another.

In response to my sister Terri Schiavo’s death, our family established the non-profit Terri Schiavo Life & Hope Network, to serve as advocates for patients, supporting families when they contact us in a crisis. Since 2005, we have helped and supported close to 4,000 individuals and families. Many of these calls come from families immediately after having a loved one diagnosed as brain dead. It is not uncommon that the brain death diagnosis is made within hours of being admitted to the hospital and an organ donor organization is contacted.

To what degree hospitals might be influenced by profit, no one can say with certainty. But what can be said is that with research and guidelines that are stressing the importance of time for our brain injured loved ones the least we can do for them, and their families, is to give them the benefit of the doubt. Because once a decision is made, like that of Ms. Heche, it can never be changed.

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