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Worldwide Challenges to the Brain Death Concept

by Dr. Heidi Klessig, June 12, 2024

The past several weeks have been packed with so many challenges to the brain death concept that I want to provide a brief summary of these events. From Michigan to New York, and from Minnesota to the Netherlands, people are becoming aware that brain death is not death.

First up, Heartland Daily News healthcare news writer AnneMarie Shieber wrote an eye-opening article about organ procurement organizations that are suing families for organs. The family of thirty-year-old Jazmine Philips, who had been declared brain dead, was forced to go to court recently to prevent Gift of Life Michigan from harvesting Philips’ organs. Philips was a registered organ donor, but her family said that she had changed her mind, telling them multiple times that she no longer wanted to do this. However, Gift of Life Michigan countered that the revised Uniform Anatomical Gift Act law states that only the donor can revoke a decision to donate. Thankfully, Muskegon County Probate Judge Kenneth Hoopes sided with the family, and Philips died on February 25, following the judge’s ruling.

Schieber’s article also described a 2013 Ohio case, in which Lifeline of Ohio successfully sued the family of Elijah Smith, who had been declared brain dead after a hit-and-run accident. Smith was also a registered organ donor, but his family objected, saying they didn’t believe he had been fully informed about the details of brain dead organ harvesting. After the family objected, Lifeline Ohio filed a complaint in Franklin County Probate Court, seeking the right to proceed with harvesting Smith’s organs. Dorrie Dils, Lifelines’ chief clinical executive, indicated that Ohio law bars anyone other than the donor from amending or revoking an organ donation. She went on to say, “We are obligated and responsible for fulfilling that wish to be a donor.” Common Pleas Judge Guy Reece agreed, and Smith’s organs were donated despite his family’s objections. Smith’s mother said they were stunned that Lifeline Ohio had “gone behind our backs…to get my son’s organs.” She went on to say, “The person who needed those organs more than anyone was Elijah. And brain death was just a convenient way to facilitate the donation of those organs.”

This article highlights the complete lack of informed consent regarding organ donation offered to people signing a donor card at the Department of Motor Vehicles. Most people believe they will be biologically dead at the time of organ harvesting in the same way that a pet dog is dead, or like someone who is ready for cremation or burial. They are not told they will still have a beating heart and ongoing respiration, digestion, and wound healing. They are not told that people have survived the brain death diagnosis. They are not told that their registration is legally binding, and that their families may have to go to court to protect them, and even then may be powerless to stop the harvest. Finally, I appreciate that Schieber correctly reports that Jazmine Philips died after her court ruling, and not previously when she was declared brain dead!

The second news story was written by Marina Zhang, a reporter from the Epoch Times based in New York. In her excellent Epoch Health article, “Brain-Dead People May Not Be Dead – Here’s Why,” Zhang summarizes her research into the brain death concept. She includes interviews with doctors who support the idea of brain death, such as Dr. James Bernat and Dr. Panayiotis Varelas. She also interviewed Dr. Franklin Miller, who along with Dr. Robert Truog has been saying for years that people who have been declared brain dead are not dead, and that doctors should honestly admit this to the public. But at the same time, Miller and Truog are in favor of continuing to allow doctors to remove these still-living people’s organs under the rubric of “medically justifiable homicide.”

Zhang also quotes doctors who deny that brain death is death, such as Dr. Paul Byrne, Dr. Doyen Nguyen, Dr. Joseph Eble, and myself, and opens her article with my personal account of providing anesthesia for a brain dead organ donor.

Zhang’s article reviews the cases of so-called brain dead patients Jahi McMath and Zack Dunlap, who both survived a brain death diagnosis. Both of the pro-brain death doctors she interviewed said that brain death testing is often performed incorrectly, and later in the article Dr. May Kim-Tenser describes a case of Guillain-Barre syndrome that was initially misdiagnosed as brain death. Dr. Kim-Tenser criticized the brain death guidelines because although they talk about the need to exclude conditions that mimic brain death, they do not give doctors advice on exactly how to exclude these mimics. This discussion of acknowledged errors in the diagnosis of brain death reveals another dirty little secret of this faulty diagnosis: many patients are being misdiagnosed, and doctors are aware of it. But these misdiagnosed people (who might possibly recover) are still being dissected to death for their organs, and since their doctors’ mistake never comes to light, no one is the wiser.

The Epoch Times article ends with a quote from Dr. Ronald Dworkin, an anesthesiologist who recently penned a gut-wrenching article describing his cognitive dissonance as he provided anesthesia for a brain dead donor. “The secret of life – including the definition of life – still remains the deepest and most mysterious one,” he said. And nature may never “permit anyone to know the exact point where brain death becomes real death.” Since the brain death diagnosis is hotly debated in medical circles, allows misdiagnosed people to undergo organ harvesting, and is not known to be death, shouldn’t we STOP and reevaluate this concept?

Thirdly, this past weekend I was invited to speak on a panel discussion about brain death at a “Biotechnology at the Beginning and End of Life” conference at the University of St. Thomas in Saint Paul, Minnesota. The conference was attended by doctors, lawyers, and philosophers and was packed with insightful and stimulating discussion. I was particularly glad to have had the opportunity to meet Dr. Chris DeCock, a pediatric neurologist and epileptologist from the University of North Dakota School of Medicine, and discuss our differences on the topic of brain death in a collegial way.

In his keynote, DeCock admitted that the current brain death guideline is untenable as it only tests for partial brain function. But he believes that brain death is still a viable concept if only we “do it right.” His idea seems to be that if doctors add tests of hypothalamic function to the current brain death guideline, the diagnosis is salvageable. He had a slide that said everyone who has lost hypothalamic function has always died, and that Jahi McMath had hypothalamic function (demonstrated by the fact that she began to menstruate) and thus did not die. 

I pointed out to him that at the time of her brain death diagnosis, Jahi had diabetes insipidus, which is an outpouring of very dilute urine due to the absence of vasopressin, a hormone produced by the hypothalamus. Her neurologist at Children’s Hospital-Oakland wrote in her chart that this “suggests hypothalamic death.”  Jahi required intravenous replacement vasopressin throughout her hospital stays in California and New Jersey, and had to be discharged to her mother’s apartment on nasal desmopressin. Therefore, according to DeCock’s own logic, Jahi met both the requirements of the American Academy of Neurology brain death guideline and “hypothalamic death." Thus, he would have declared her to be brain dead, and if Jahi’s mother had agreed, she would have been sent for organ harvesting. Yet, history has proven that Jahi certainly was not dead, as she lived for almost five more years and recovered some brain function! No one would have guessed that she still had hypothalamic function until three or four months later when she began to menstruate. Jahi McMath’s case conclusively shows that those who hope to salvage the brain death diagnosis by adding hypothalamic testing to the current brain death guideline are incorrect, as doing this would have sentenced Jahi to death. I am not sure whether Dr. DeCock had previously considered this, but it seemed to make him think.

And lastly, I was recently interviewed by reporter Sander Compagner on the topic of brain death for the Netherlands news broadcast, “De Andere Tafel,” which is a joint production of “Café Weltschmerz” and the news magazine “De Andere Krant.” I was joined by my Netherlands friend and colleague, Annet Wood, who is a vocal advocate for vulnerable people being threatened by a brain death diagnosis. In case your Dutch is rusty, you can hear my comments in English (with Dutch subtitles) on “Orgaandonatie – opstaan uit de hersendood” at minutes 14:47, 25:53, and 44:07 of the program, which is linked above.

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