Medical and legal elites want the Uniform Law Commission (ULC) to change the Uniform Determination of Death Act (UDDA) to make “brain death” easier to declare, explicitly WITHOUT consent, including for the apnea test which removes the life-supporting ventilator and only risks harm.
Conscience opt-outs have been discussed but ONLY IF objection is made “prior” to initiation of the “brain death” exam protocol. Physician and healthcare provider opt-outs were not included. Conscience rights must include both patients and providers.
Dr. Byrne, Dr. Christine Zainer, and others are working to gather 10,000 letters to send to the Chicago-based Uniform Law Commission (ULC) to prevent making “brain death” easier to declare without explicit consent
Paul Byrne
Dr. Paul A. Byrne is a Board Certified Neonatologist and Pediatrician. He is the Founder of the Neonatal Intensive Care Unit at SSM Cardinal Glennon Children’s Medical Center in St. Louis, MO. He is Clinical Professor of Pediatrics at University of Toledo, College of Medicine. He is a member of the American Academy of Pediatrics and Fellowship of Catholic Scholars.
Dr. Byrne is past-President of the Catholic Medical Association (USA), formerly Clinical Professor of Pediatrics at St. Louis University in St. Louis, MO and Creighton University in Omaha, NE. He was Professor of Pediatrics and Chairman of the Pediatric Department at Oral Roberts University School of Medicine and Chairman of the Ethics Committee of the City of Faith Medical and Research Center in Tulsa, OK. He is author and producer of the film “Continuum of Life” and author of the books “Life, Life Support and Death,” “Beyond Brain Death,” and “Is ‘Brain Death’ True Death?”
Dr. Byrne has presented testimony on “life issues” to nine state legislatures beginning in 1967.
The Letter
Help Dr. Paul A. Byrne and Dr. Christine Zainer
Attached is the letter to be printed our and signed if you agree that the new guidelines being proposed need to be stopped. Send it to:
f you agree with the attached action letter prepared by Drs. Paul Byrne and Christine Zainer, please sign and return, if possible, before July 9, 2023, to
Christine Zainer (NOT directly to the ULC):
Christine Zainer, P.O. Box 26635, Milwaukee, Wi 53226
They will make copies and send the letters in a bundle to the ULC.
As you know the Apnea Test has been a big concern of mine since the beginning of Jamie’s declaration of “brain death”. It is addressed in the letter above:
The apnea test is part of BD testing. During the apnea test procedure, the life-supporting ventilator is disconnected for up to 10 minutes. There are no benefits to the patient, only risks of harm.
1. The statute ought to protect the person from being declared dead when still alive. Full and complete information about the apnea test and any tests used to declare BD must be provided with freedom, at any time, by patients, surrogates, physicians, and other health care providers, to decline or cease the apnea test, exams, and protocols, for the determination and declaration of BD.
2. Treatment options ought to be made available that protect and preserve the life of the patient, even if disability is a potential outcome. Treatments should NOT be denied based on “quality-of-life” judgments by caregivers even though a patient or surrogate may legitimately refuse them. 3. Model statute below, in the negative, sets minimum criteria before death is declared. This minimum fulfills a change in state of the three vital systems to protect living patients from being treated as dead.
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.
Another attack on the dead donor rule comes in this month’s Journal of Medical Ethics. Anthony P. Smith, a philosopher at the University of Utah, argues that we should abandon the traditional view underlying the practice of organ donation – that patients must be dead before their organs are removed.
Let’s assume that a patient is in a vegetative state and has agreed to donate his organs in an advance directive. What would be wrong with removing his heart and lungs? The traditional answer is that the patient is not dead yet – removing those vital organs would kill him.
True, argues Dr Smith, but “death does not harm permanently unconscious patients” (PUC).
“In these cases, then, causing the death of PUC patients is not morally wrong. This undermines the strongest argument for the Dead Donor Rule—that doctors ought not kill their patients. Thus, there is nothing wrong with abandoning the Dead Donor Rule with regard to PUC patients. Importantly, the harm-based argument defended here allows us to sidestep the thorny debate surrounding definitions of death. What matters is not when a patient dies but whether their death constitutes some further harm.”
This is not a new argument. Ten years ago, in the same journal, Walter Sinnott-Armstrong and Franklin G Miller declared that the key moral issue was not whether doctors deprived a person of life, but whether they deprived him of “human abilities that make a life worth living”. What about a slippery slope? Not a problem, they declared in “What Makes Killing Wrong?”:
“Critics might object that abandoning the dead donor rule will take us down the slippery slope to procuring vital organs from the mentally retarded or other groups of vulnerable individuals with disabilities. Absolutely not. We can hold the line for vital organ donation by continuing to restrict it to those in a state of total (universal and irreversible) disability. It is only these donors who would not be harmed or wronged by vital organ donation, since all other donors have abilities to lose.”
What about consent? In his article Dr Smith says that consent is important “because it helps us to be sure that a PUC patient will not be harmed by being an organ donor”. If a person had given instructions that he did not want to be an organ donor, his interests would be harmed if his wishes were not respected. However, there does seem to be grey area in his argument. Most people who suddenly become permanently unconscious have not expressed a wish one way or the other. What if their family or guardian consents on their behalf?
Traditionally – as far back as the Greeks and Romans, life itself was the ultimate value. Dum spiro, spero, while I breathe, there’s hope, is the Latin adage. But with human being increasingly being defined as a collection of physical capacities rather than as embodied persons, whether or not one is alive may be less important than whether or not one’s body is useful.
Other articles I have written over the years on the Dead Donor Rule.
***If you don’t have a life directive then at the VERY least discuss with your family how you want your life to be handled in the event of an unforeseen circumstance.***
