By John A. Di Camillo
Two different statements about brain death and organ transplantation over the past several months raise serious concerns about whether patients declared brain dead are actually dead.
Both statements reference decades-long controversies about the concept of brain death, the legal standard of death in the United States, recent developments in public policy and medical guidelines, and current clinical practices for determining death.
And both raise concerns about organ transplantation practices that rely on determinations of brain death.
The statement “Integrity in the Determination of Brain Death: Recent Challenges and Next Steps” was released in Apr 2024 by the National Catholic Bioethics Center (NCBC), a not-for-profit research center located in Philadelphia, Pennsylvania.
The statement calls attention to “a decisive breakdown in a shared understanding of brain death (death by neurological criteria), which has been critical in shaping the ethical practice of organ transplantation.”
The NCBC notes that the Catholic Church has encouraged organ transplantation as a life-affirming act of heroism. Yet vital organs such as the heart, both lungs and whole livers may only be removed after a patient has died — and whether patients are dead is where the breakdown has occurred.
The NCBC describes two recent events that led to this breakdown. First, a controversial proposal was put forward to lower the legal standard from whole brain death (“irreversible cessation of all functions of the entire brain”) to only partial brain death.
The proposal sought to address the disconnect between the existing law and current clinical practice, which tests only for partial brain death. No agreement could be reached on this or other proposals within the Uniform Law Commission (ULC) and the entire revision process was paused indefinitely.
Shortly after this, in Oct 2023, the American Academy of Neurology and other medical associations published updated brain death guidelines. These clinical guidelines affirmed a partial brain death standard more explicitly than ever.
As one significant example, the guidelines state “that clinicians may declare patients brain dead despite evidence of neuroendocrine function,” in particular, hypothalamic function. The hypothalamus is a part of the brain involved in body temperature regulation, salt-water balance, and other functions. The NCBC notes that “patients with confirmed hypothalamic function should not be diagnosed as brain dead, nor treated as dead, for the purpose of organ procurement.”
The NCBC proposes to address these concerns by working together with individuals, institutions, members, and partners to accomplish three tasks: (1) restate a “philosophically coherent concept of death,” (2) “strengthen ethical standards and protocols for the determination of death,” and (3) “educate clinical and administrative leaders” about this problem and its impact, including on the practice of organ transplantation.
A different statement, titled Catholics United on Brain Death and Organ Donation: A Call to Action, was published on CatholicCulture.org in February 2024. It represents the personal opinions of 151 Catholic healthcare professionals, theologians, philosophers, ethicists, lawyers, apologists, pro-life advocates, and others, including a brain death survivor. It mentions the same two recent events, among others, and also highlights continued hypothalamic function in patients declared brain dead. It observes that “the Catholic Church has never accepted partial brain death.”
Catholics United also discusses the scope of the problem. For example, 70 percent of donors are declared dead using brain death criteria prior to organ removal. According to medical literature, 50-84 percent of patients declared brain dead demonstrate continued hypothalamic function.
Furthermore, surveys published over the past decade reveal that healthcare professionals often do not rigorously and consistently apply brain death criteria. Catholics United draws the conclusion that, right now, “a person considering organ donation does not have good reason to expect that he or she will be truly dead at the time of vital organ procurement.”
Catholics United cites the teaching of the Catechism of the Catholic Church that “organ donation after death is a noble and meritorious act.” However, it cautions, the Church also teaches that organs can only be removed when it is certain that the patient is dead.
Noting that the problematic brain death guidelines and inconsistencies in practice are unlikely to be meaningfully improved in the near future, Catholics United strongly recommends against agreeing to be an organ donor at this time, whether on a driver’s license or in an advance directive.
Given the deeply problematic practice of brain death right now, apart from whether it may be valid as a concept, Catholics United also makes a number of other concrete recommendations. These are geared toward enabling sound and informed health care decisions at the end of life, developing criteria that will establish certainty of death, and protecting the consciences of patients, health care professionals, and health care institutions so that no person or institution is forced to accept the use of brain death criteria, particularly when it comes to organ donation.
While they differ in several ways, both the NCBC and Catholics United call for discussion and clarity on the concept of death, improved clinical criteria, and more education.
The issue of brain death and organ donation impacts everyone — individuals, families, pastors and spiritual directors, health care professionals and institutions, Church leaders, public officials, and all of society.
As a contributor to both of these statements, I believe that at an absolute minimum people across the globe must urgently raise awareness on the various problems with brain death in clinical practice, which will enable better-informed decision-making on organ donation, while working to enable and respect conscientious objections to the use of brain death criteria at all levels. – UCA News
*Dr. John A. Di Camillo is the Personal Consultations Director and Ethicist at the National Catholic Bioethics Center, a not-for-profit research center located in Philadelphia, Pennsylvania. The views expressed in this article are those of the author and do not necessarily reflect the official editorial position of UCA News.
