I haven’t blogged on brain death for a few months, but I came across this article today by Alex Schadenberg, Executive Director, Euthanasia Prevention Coalition.
With his permission I am posting the article here so you can stay informed on what is coming down the pipeline.
This article does not question organ donation but it does question whether determinations of brain death are always accurate and whether changes to brain death determinations will cause further controversy. There have been several cases of people declared brain dead who were not brain dead.
I am concerned that the Uniform Law Commission, which writes model laws in the US, are debating amendments to the Uniform Determination of Death Act (UDDA) which will make it easier to declare someone brain dead. Sara Buscher, a lawyer and past-chair of EPC-USA states in her recent article: ( please read)
The current uniform act has been adopted in some version by all 50 states says:
“An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”
Reasons offered for seeking changes to the existing UDDA include:
• Eliminating lawsuits by family members, especially by parents of children declared brain dead. • Making it easier to ration medical care, especially Intensive Care Unit beds. • Making somewhat more organs available for transplant.
“In response to a number of recent lawsuits related to brain death determination,” the American Academy of Neurology has proposed a revision to the UDDA, the RUDDA.
The revisions to the UDDA are NO inconsequential.
The first change would seek to replace the term irreversible in the standards with the term permanent.
At first glance, this may not seem like much of a change, but the definitions make a difference. “Irreversible” is commonly held to mean “not capable of being reversed.”
The term permanent is being offered as meaning that “no attempt will be made to reverse the situation.” So, because doctors are not going to attempt to correct the patient’s problem, it now becomes “permanent.”
By changing the term irreversible to permanent it means that people with treatable conditions will not be treated.
Klessig continues:
The second change would narrow down the definition of brain death from “the entire brain” to just selected functions of the brain stem that can easily be tested at the bedside.
This change recognizes that current practice does not test all functions of the entire brain, since most people diagnosed as brain-dead still have a functioning hypothalamus, a part of the brain.
Many also still have electrical activity on electroencephalogram (EEG), which is one of the reasons that EEG testing as a requirement for a brain death diagnosis was dropped in the 1970s.
The third change would standardize the brainstem testing protocol. The current UDDA states only that “[a] determination of death must be made in accordance with accepted medical standards.”
Since the standard isn’t defined, every medical center decides for itself which brainstem tests are performed. This has aided lawyers suing on behalf of patients declared as brain-dead by introducing doubt as to the validity of the brain death testing at one center compared to another.
The fourth change would eliminate the necessity for obtaining consent prior to testing for brain death. The apnea test for brain death disconnects patients from their ventilator for 6–8 minutes to see if they will breathe independently.
This test has absolutely no value for the brain-injured patient and can only cause harm to a patient not yet declared brain-dead. (I’ve blogged on this horrific test multiple times)
When the ventilator is disconnected, rising levels of carbon dioxide in the blood cause intracranial pressure to rise, further damaging the brain. It is like making a heart attack patient with chest pain run on a treadmill. The test can only make the patient worse and only serves the interests of the transplant industry.
Under the current UDDA there have been cases of people who were declared brain dead who were not brain dead.
For instance, a BBC news story published on April 25, 2022 told the story of Lewis Roberts.
Lewis Roberts and his sister, Jade
Roberts, who was 18, was struck by a van in March 2021. A BBC story reported:
At one point the family was told he had suffered a brain-stem death but hours before surgery to donate his organs, he began to breathe on his own.
His case has led to reviews in the way head injury patients are treated.
Jade Roberts, his sister, said: “They said that Lewis had passed away, his brain-stem was dead… and there was nothing more they could do.”
Because his family had agreed to donate his organs, his life support machine was kept on and he showed signs of life when he squeezed his sister’s hand.
…University Hospitals of North Midlands NHS Trust, where Mr Roberts was treated, said national clinical guidelines were strictly followed when he was declared brain-stem dead.
A baby boy who was given no chance of survival after being declared brain dead miraculously survived after his life support was switched off.
Kaleb Crook, now 15 months old, astounded doctors when he continued to breathe on his own and squeezed his mother’s finger.
His parents, Becki and Phil Crook, had said their final goodbyes to their ten-day-old son, who was brain damaged due to oxygen deprivation.
The Daily Mail story focused on the fact that Kaleb was going to have his first Christmas at home at 15 months of age.
Kaleb and his family
This is a life and death issue.
The stakes are high.
When a person is declared brain dead they are legally dead.
The body is often kept alive for the purpose of organ donation but if the family does not consent to organ donation then life-sustaining treatment is ceased.
Either way, a false diagnosis of brain death effectively means death.
The Uniform Determination of Death Act was established to determine when a person is brain dead. I am very concerned with the direction of the proposed amendments to the UDDA which will make it easier to determine brain death.
My primary concerns relate to changes in definitions that will lower the standard for determining brain death, the attempt to eliminate the influence of family or the power of attorney for health care from providing consent.
I recognize that almost everyone declared brain dead does not recover but there are factors that make this a reality. Since brain death determinations lead to organ donation or a withdrawal of life-sustaining measures, therefore a determination of brain death, when the person isn’t brain dead, will almost certainly result in death.
George Pickering II’s son was declared “brain-dead” after he suffered a massive stroke in January. In an effort to buy time for his son, he did the wrong thing for the right reasons. He brought a gun to the hospital to give him time with his son.
“They were moving too fast. The hospital, the nurses, the doctors.They were saying he was brain dead, he was a vegetable, said Pickering. “During that three hours, George squeezed my hand three or four times on command.”
George Pickering II’s son was declared “brain-dead” after he suffered a massive stroke in January 2015.
The hospital ordered a “terminal wean” which is a process that slowly ends a person’s life by removing life support.
George Pickering son HAD signed the donor card.
However, because he was not ready to let go of his son and the hospital staff was moving too quickly (they usually do) his son, George Pickering III, is still alive and well because of it.
“There was a law broken, but it was broken for all the right reasons. I’m here now because of it,” said Pickering’s son, George III. “It was love, it was love.”
It wasn’t until several weeks after the incident that Pickering’s son said he learned his family was told he was unlikely to recover from his stroke and coma. Pickering said he still has people come up to him and say, “I thought you were dead.”
“It’s the duty of a parent to protect your children and that’s all he did,” said Pickering’s son. “Everything good that made me a man is because of that man sitting next to me.”
The staff at Tomball Regional Medical Center had notified Donate Life Texas an organ procurement organization that Pickering’s son was a donor.
Remember this is Federal law when there is a potential organ donor whether they have signed the organ donor card or not.
In 1984, the National Organ Transplant Act (NOTA) was signed into law requiring this. OPO staff review the potential donor’s medical condition and history to determine his or her eligibility for donation. The OPO will search the donor registry to determine if the patient is a registered donor.
IF the patient is on the donor list it is an uphill battle for the parents and in most cases especially Trauma 1 hospitals. The organ donor contract will NOT be violated and the harvesting of the organs will proceed. Occasionally in smaller hospitals they will give the patient a bit more time if the parents are not in favor of the donation.
Federal law requires timely notification
“Timely notification” means a hospital must contact the OPO by telephone as soon as possible after an individual has died, has been placed on a ventilator due to a severe brain injury, or who has been declared brain dead (ideally within 1 hour). That is, a hospital must notify the OPO while a brain dead or severely brain-injured, individual is still attached to the ventilator and as soon as possible after the death of any other individual, including a potential non-heart-beating donor. Even if the hospital does not consider an individual who is not on a ventilator to be a potential donor, the hospital MUST call the OPO as soon as possible after the death of that individual has occurred.
(c) Enforcement of OPTN rules—(1) OPTN recommendations. The Board of Directors shall advise the Secretary of the results of any reviews and evaluations conducted under paragraph (b)(1)(iii) or paragraph (b)(3) of this section which, in the opinion of the Board, indicate noncompliance with these rules or OPTN policies, or indicate a risk to the health of patients or to the public safety, and shall provide any recommendations for appropriate action by the Secretary. Appropriate action may include removal of designation as a transplant program under §121.9, termination of a transplant hospital’s participation in Medicare or Medicaid, termination of a transplant hospital’s reimbursement under Medicare and Medicaid, termination of an OPO’s reimbursement under Medicare and Medicaid, if the noncompliance is with a policy designated by the Secretary as covered by section 1138 of the Social Security Act, or such other compliance or enforcement measures contained in policies developed under§121.4 http://cfr.regstoday.com/42cfr121.aspx#42_CFR_121p7
The hospital that does NOT notify the Organ Procurement Organization, (“usually within 1 hour”) they can lose their reimbursements. So there you go.
I am thankful this family is together to celebrate Christmas. Even though as stated above I would never recommend taking a gun into a hospital… his son is alive and not dead and they are not grieving this Christmas.
I admit this was bittersweet to read as Jamie also had a stroke and we were told “no hope”, “devastating injury”, “brain dead”, “no one recovers”. IF I ONLY KNEW THEN, WHAT I KNOW NOW. Hopefully other families will learn from my experience.
Lexi Hansen was hit by a car on the 26th of February while attending college at BYU.
When her brother, Tanner and his girlfriend arrived at Utah Valley Hospital they were greeted by a Social Worker who told them:
“Lexi has suffered a very traumatic brain injury and the extent of her injuries were still uncertain. He also explained that she was not breathing when the ambulance had arrived and had to be resuscitated at the scene.”
The Social Worker told them that Lexi had bleeding in the deep part of her brain and possibly on the upper layers of her brain as well. She also had a C2 fracture of her spinal cord and contusions to her lungs. He stated that everything was considered minor compared to the injuries to her brain.
The doctor explained that Lexi had experienced a shearing injury in the subarachnoid area of her brain, as well as bleeding in either the epidural or subdural area. They would not be able to operate as the injury was too deep in her brain and the damage had already been done. A shearing injury is when the neurons that carry electrical signals in your brain get sheared, or ‘cut-off,’ from each other. These are vital connections in our brain and they cannot be repaired once they are lost. After learning this news we asked if we should have the family members living out-of-state fly in. Travis’s response to this was a non-hesitant, ‘Of course,’ meaning they had not given Lexi a real chance of even making it through the night. Both Travis and the doctors kept asking when the soonest all the family could be here and how long would be needed to extend Lexi’s life.
The family was shown the results of her CT scan. The doctor’s pointed out little white specks on the CT and stated that these were the areas of ‘shearing.’ One us chimed in and asked what percent chance she had of coming out of this. He sighed and said, “One percent, maybe two. Maybe.”
He went on to explain how with brain injuries they can never truly know the severity of the outcome and if Lexi were to make it she may never walk or speak again. He said that many people who suffer brain injuries end up in a care center, never to be independent in functioning for the rest of their lives. (Of course doctors always give people the worst most hopeless news)
When Lexi came into the ER she had come in with a GCS (Glasgow Coma Scale) score of 3. (A GCS score is used to evaluate how conscious and responsive someone is after a traumatic brain injury). He explained that patients that come in with a GCS score of 3 pretty much have zero chance. He also explained that Lexi had been displaying ‘decorticate’ and ‘deceberate’ posturing, and had even been transitioning back and forth between the two. Both signs of posturing indicate severe brain damage.
A Miracle
The family made their home at the hospital and continued round the clock prayer and fasting for Lexi.
On Sunday with two family members in the room, Lexi opened her eyes.
“We ran to get the rest of the family that was in the waiting room. With us all together, we decided to shut the door and sing hymns to her to invite the spirit as we had done before. We sang hymns like, “Be Still My Soul,” “Abide With Me,” “I Need Thee Every Hour.” While were singing, Lexi had completely opened her eyes and was looking at each of us surrounding her at her bed.While we were singing, she hand signed I love you, moving her arm around so that everyone could see. She then reached for each person’s hands individually so she could squeeze them.”
On Friday she was moved from the ICU to a Neurology Rehab Unit of a hospital.
Everyday Lexi is improving.
Marcia Hansen said her daughter’s improvement has far exceeded her doctor’s expectations.
“We know that it was a miracle. We absolutely know that. We know that God’s hand was in it,” she said, adding that her daughter’s doctors were amazed. “They tell us all the time she’s a miracle and ‘you have a higher power working for you because she shouldn’t be here.’ She had zero percent chance of making it when she came in and then 1 percent. They weren’t even going to stitch up her face.” ABC News watch the video.
What we can learn from Lexi:
1) The doctors who champion “brain death” will say the doctors in Utah made a mistake. Rather than admit someone wakes up from brain death,they always “blame the tests” when someone wakes. “No one wakes up from brain death they say”.
2) We can see that even with a Glasgow Coma scale of 3 and a high C2 spine injury she woke up and is alive.
Jamie was at a 7 GCS when he was brought to Vanderbilt and he had a high C5-6 spinal cord injury.
3) Most Level 1 trauma centers would have already been talking about organ donation. If you child was a donor they would have told you, “As you can see, your daughter is an organ donor”.
4) The Organ donation industry is BIG business and they don’t want to give the patient time to wake up. I’m so glad for the advice I got years ago from Ft Lauderdale lawyer for injuries Wolf & Pravato, they woke me up to these insidious facts.
There is a Facebook page Prayers for Lexi if you want to follow her progress along.
Exerts from Amanda story, Lexi’s brother’s girlfriend who is in nursing school.
Today I watched this video interview from NBC News on a mother who delivered twins. She was told that the boy, Jamie had died. She began to hold him on her chest. The doctors told her his movement was a reflex, same as in brain death. As baby Jamie began to suck breast milk off her finger they called for the doctor who would not come back in.
Only when they told the doctor that they had accepted his death did he come back in.
The rest is history. Not sure if the video will show up but here is the link, watch it.
He started making movements just five minutes after he had been handed to us, but the movements were just getting stronger and stronger and after two hours, we thought, he’s getting stronger. he’s not dead. eventually, we said to the doctor — he wouldn’t come back. we kept saying, he’s doing things that dead babies don’t do. you might want to come and see this.
he was amazed he was actually alive.
go and tell him that we’ve come to term with the baby’s death, can he just explain it? that made him come back.
The initial interview was done when the twins were five months old, with parents David and Kate Ogg.
Ann Curry did the interview, who I miss terribly on NBC.
When I read this story this morning (via a photo on Pinterest that lead me there), I could not help but this of Jahi McMath and her mother Nailah Winkfield, a mother who is fighting to keep her child on life-support to give her time to heal.
Medical miracles do happen and I continue to pray that Jahi will wake up and God will expose the horrific lie of brain death.
Kangaroo Care
The Ogg’s were following a procedure that began in Australia called Kangaroo Care. Skin-to-skin contact with their mothers releases oxytocin, the so-called “cuddle hormone,” which affects multiple areas of newborns’ brains.
Despite the evidence that it works, the medical establishment has been slow to recommend skin-to-skin contact with newborns. Ignorance about the research findings and fear of handling premature babies are two of the main obstacles, say Ludington and Spatz, who works at Children’s Hospital of Philadelphia.
“In the United States, our biggest reason is the physicians don’t know about it because it’s nursing-generated knowledge,” Ludington says. “The physicians want to see the data, but they don’t read any nursing journals.”
Fear plays a role, too, Spatz says. “I still see in most NICUs (neonatal intensive care units) that skin-to-skin is not a standard of care.” NICU babies tend to be tiny and fragile and hooked up to tubes and machines, and both nurses and parents worry about trying to move them, she says. Source
One of my big regrets was that I did not get in bed with my Jamie and hold him.
Nailah, if you can get in that bed with Jahi and hold her.
