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Writer's pictureRespect for Human Life

Sister of woman declared "brain dead" describes how this discredited diagnosis allows doctors to treat patients as less than human

Her story demonstrates the utter cruelty of the brain death paradigm, which labels neurologically disabled people as being "dead already."


The late Amber Ebanks Screenshot/GoFundMe


Written by Heidi Klessig MD and originally published on LifeSite News on September 16, 2024. Read the original article here.


On July 30, 2024, Amber Ebanks, a 23-year-old business student, suffered an intraoperative stroke and subarachnoid hemorrhage during the attempted embolization of an arteriovenous malformation (AVM) in her brain. Doctors at Montefiore Hospital in the Bronx declared her “brain dead” ten days later even though she still had partial brain function. Despite expert testimony that with proper treatment she was likely to recover additional brain function and even possibly consciousness, her care team refused to provide such treatments. The hospital also refused to feed Amber or provide basic hygiene to the point that her sister had to remove maggots from her hair.


After being starved and neglected for a month in an American hospital, Amber’s heart finally gave out and she passed away on September 6, 2024. Her story demonstrates the utter cruelty of the brain death paradigm, which labels neurologically disabled people as being "dead already." People declared dead have no civil rights, leaving "brain dead" people and their families defenseless against doctors, hospitals, and the courts. Kay Ebanks, Amber’s sister, describes her ordeal as follows:

 

“My sister Amber arrived at the hospital on July 30, driving herself for a procedure that had been explained to her as routine in prior visits following her AVM rupture in February. She was nervous, so I went with her for support. To this day, the guilt I feel is overwhelming because I reassured her everything would be fine. However, from the moment she came out of that procedure, which went terribly wrong, the doctors seemed to give up on her. They made it clear from the first day that they didn’t expect her to wake up, and if she did, they said she would never be the same Amber I had seen the day before.


On that very first day, a representative from LiveOn, the organ donation organization, was already present, which a nurse later told me was vile—why would they show up so soon? Though they didn’t approach us immediately, it was clear where things were heading. We had three follow-up meetings with the doctors, and we made it clear from the start that we had no intention of removing Amber from life support. We believe in a God who can do the impossible. The doctors had said there would be an ethics meeting before performing a brain death test, but that meeting never happened.


They also told us that the medication used to induce brain rest and reduce swelling would take about 14 days to clear from her system before they could accurately test for brain death. But they went ahead and performed the test only 10 days after the surgery. On the day they conducted the brain death test, I wasn’t at the hospital; only my 70-year-old grandmother was present. When they told her that they believed Amber had passed and wanted to do the test, she agreed, not fully understanding what that meant. What we didn’t realize at the time was that agreeing to this test meant they would no longer offer Amber any further care or support, including even a referral for transfer to another facility.


They never discussed the apnea test with us or explained in detail what brain death truly meant for Amber’s care. Immediately after the test, they pushed to move her to palliative care without the ventilator. We refused, and they reluctantly agreed to move her with the ventilator still in place. Two days later, Amber was transferred to palliative care with the ventilator.

Meanwhile, my father couldn’t get a visa and hasn’t had his passport returned to him yet. The hospital pressured us relentlessly to remove Amber from life support, coming to us every other day. LiveOn eventually approached us a few days after Amber was moved to palliative care, suggesting that her organs could save many lives. We told them unequivocally that we would never allow that. Amber is our loved one, and we would never "butcher" her like that.


We had another meeting with the palliative care doctor and social worker. The social worker suggested that my father, who hadn’t seen Amber in three and a half years, say his goodbyes to her over FaceTime or wait until her body was sent back to Jamaica. I explained Amber’s wishes to the hospital—that she wanted to be treated as full code and that she would never want to be placed in palliative care to die. The hospital responded that they treat living patients, not dead ones.


In response, we decided to take legal action to get more time to transfer Amber to a facility that would give her a chance. However, no facility would accept her with the brain death diagnosis, except for New Beginnings, owned by Allyson Scerri. But Allyson needed time to arrange things to take on such a complex case. Throughout the court process, I was told by the palliative care doctor that when Amber’s heart stopped, they would remove her from life support, no matter how we felt about it.


One day, I found maggots in Amber’s hair and was outraged. I demanded to know how they could allow such neglect. Why wouldn’t they at least treat her infection with antibiotics? The doctor coldly responded that they would do nothing more than what the court had ordered. However, after my complaints, they started cleaning her wound more thoroughly, and the smell, which had been unbearable, improved.


The day Amber’s heart stopped I received a call from a nursing home patient advocate telling me they were willing to consider accepting her. However, the hospital refused to provide the necessary referral because the nursing home was in New York and subject to the same laws regarding brain death.


At 4:00 pm, a doctor came in to check Amber’s heart and said nothing to me. By 5:00 pm, two doctors came in, checked her heart again, and told me it had stopped. They said they would have to remove her from the ventilator immediately. I begged them for 30 more minutes, but they refused. I stayed with Amber throughout the entire process, holding her. They gave me an hour before they would send her body to the morgue, but I refused to let them touch her again. With Allyson’s help, I arranged to have Amber transferred to a funeral home in Long Island.”

 

“Brain dead” people are not dead: their hearts beat, their lungs absorb oxygen and release carbon dioxide, and their brains can even have ongoing partial functioning according to the most recent American Academy of Neurology brain death guideline. Amber Ebanks’ civil rights to life and medical care were heartlessly and illegally removed -- she did not meet the legal standard for brain death in New York or under the Uniform Determination of Death Act which require the “irreversible cessation of all functions of the entire brain including the brain stem.” She fought for her life alone, surrounded by a medical system which looked on her as being less than human. “Brain death” lacks moral, medical, and legal foundations and is not death but rather a concealed form of euthanasia.

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