W hat if your local hospital could declare your family member “brain dead” even though part of her brain was still functioning? What if the hospital could use that illegitimate diagnosis of brain death to then decide to withhold life-sustaining treatment from her and thereby passively euthanize her? And furthermore, what would your reaction be if you were told that there are financial incentives for health entities to withhold the ordinary means of life-sustaining treatment, should your family member suffer significant brain trauma? Tragically, this scenario is possible in our current health-care system today. We believe that the likelihood of its happening to someone you love is growing in the wake of a little-noticed change in a medical association’s brain-death guidelines.
After an unsuccessful attempt in 2023 to change the Uniform Determination of Death Act to downgrade the legal definition of death from whole to partial brain death, the American Academy of Neurology (AAN) has now done so. “It seems that the Guidelines Subcommittee did not consider the attempts in the past 2 years to revise the Uniform Determination of Death Act (UDDA), as this law is the heart of the issue,” Christopher A. DeCock and other physicians and neuroscientists write in a letter to the editor of Neurology.
Now the states of New York and Nevada are adopting the revised AAN guidelines in an arbitrary manner that endangers the patients’ lives and dignity and the rule of law. The AAN itself seems to admit that there is a lack of high-quality scientific evidence justifying their changing the criterion of death from whole to partial brain death, as they used a “consensus-developing methodology” to approve the guidelines. To put it another away, it appears that the AAN chose not to consider the robust and diverse opposition to the AAN position from experts in medicine, science, bioethics, and the law.
In New York State, according to our legal research, the acceptance of the AAN guidelines by the Department of Health appears to violate the state’s own legal regulation requiring that a patient have “irreversible cessation of circulatory and respiratory functions; or irreversible cessation of all functions of the entire brain, including the brain stem, to be legally declared dead” (emphasis added). The seemingly arbitrary and perhaps unlawful change by the New York Department of Health could cause patients to be wrongfully declared brain dead.
To put it bluntly, this state agency unilaterally changed the state’s “brain death” criteria. This change in brain-death criteria means that patients could be wrongfully declared “brain dead” even if they continue to have some brain function and are still very much alive. To put a fine point on it, if unchallenged, the change in brain-death criteria allows health-care providers in New York State to wrongfully declare brain dead a patient who still has brain function and is still alive. This unjust action by the health department occurs in an environment in which health-care entities have powerful financial incentives to use “brain death” as a means of securing fresh organs. This medically flawed and legally suspect modification to the state’s brain-death criteria could lead to wrongful determinations of brain death and result in tragic consequences for patients and families.
From our experience with safeguarding the rights of vulnerable patients, we see that New York’s illegitimate change in brain-death criteria could have a disproportionate impact on the most vulnerable and underserved. Health-care laws and policies that violate bioethical principles and the basic civil rights of patients most dramatically burden people who are poor or who come from historically marginalized communities. African Americans, Hispanic Americans, and those whose proficiency in English is limited are disproportionately affected. Given reports that racial bias and discrimination persist in our nation’s health-care system, the new brain-death criteria could be particularly tragic for African-American and Hispanic communities.
States should demand that the AAN retract its abrupt change of the guidelines that contravene existing state laws for determining brain death. States should demand such a retraction because the AAN changes implicitly encourage health-care professionals and health entities to act in violation of state law on brain death. The AAN should not have sought to liberalize brain-death criteria without the serious bioethical, medical, scientific, legal, and moral scrutiny that such a momentous change in medical practice requires.
The AAN guidelines provide support for allowing patients to be declared “brain dead” when part of their brain is still functioning. This is problematic for patients and health-care professionals alike. The alteration of the guidelines violates the life and dignity of the patient, promotes the destruction of the human person, and undermines the medical profession’s credibility. The AAN action suggests that some within the medical industry are attempting to play God by illegitimately moving the goalpost to prematurely declare living persons dead.
Lest anyone doubt that there is a serious attempt to obtain organs from those who are still alive, the recent expansion of normothermic regional perfusion — a procedure whereby brain death is intentionally induced as part of controlled donation after circulatory-determined death — suggests that, for some in the global health-care industry, obtaining organs is more important than safeguarding the health of living persons with serious brain injuries.
At the heart of health care is the relationship between a patient and a doctor, and this relationship requires trust. Patients need to trust that the doctor is working for their best health outcomes and will respect their dignity and conscience. What the AAN, Nevada, and New York are doing harms the patient–doctor relationship by introducing violations of human dignity into the range of possible medical responses.
What is urgently needed is humility and greater protections for the life, health, and civil rights of vulnerable patients. The AAN needs the humility to acknowledge the dignity of all patients and to stop downgrading the appropriate criteria for the determination of death without scientific certainty. States need humility and the courage to protect the lives of their citizens, to enforce state laws that shield patients from unethical and harmful treatment, and to hold health-care entities accountable to their legal obligations. Medical associations and state governments have an ethical and moral obligation to protect and respect the life and human dignity of every patient, even those with brain trauma.
Michael Arthur Vacca, J.D., is the director of bioethics at the Christ Medicus Foundation. Louis Brown Jr., J.D., is the executive director of Christ Medicus Foundation and the associate director of the Center for Law and the Human Person at the Catholic University of America Columbus School of Law.