By Colten Maertens-Pizzo

In episode 109 of Bioethics on Air, “Redefining Death by Revising the UDDA,” Joe Zalot interviews Christopher DeCock, MD, about how proposed changes to the Uniform Determination of Death Act (UDDA) shift the focus from obtaining prudential certitude that someone is dead to establishing that he or she is “dead enough” to remove life-sustaining treatment. DeCock works as a pediatric neurologist in Fargo, North Dakota. As an observer for the Uniform Law Commission—the legal body tasked with proposing changes to the UDDA—he is specially suited to explain the controversy surrounding the proposed changes.

According to DeCock, the UDDA emerged during the late 1970s and early 1980s in the wake of the Harvard Ad Hoc Committee that defined irreversible coma, or brain death. Because of rising interest in determining death, the UDDA standardized a definition of death for medical and legal purposes. It states that “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.” DeCock refers to the President’s Commission 1981 report, Defining Death: Medical, Legal, and Ethical Issues in the Determination of Death, as being especially important for this definition. He paraphrases the commission’s finding that “when the brain dies the body very quickly thereafter disintegrates.”

The Uniform Law Commission is composed of lawyers from all fifty states whose goal is to identify areas where consistency among state laws would be helpful. Since the 1980s, the commissioners have gathered data, observers, and experts to reach uniformity on definitions. However, the commission does not make law. As DeCock explains, “they make suggestions to states that make law.” States generally adopt the proposed definitions while making tweaks to the language for the unique interests of their people.

Revising the UDDA is the prerogative of the Uniform Law Commission. Today, some are calling for changes to the UDDA’s definition of death. These changes include replacing the word irreversible with permanent and replacing the notion of whole-brain death with three problematic criteria. DeCock argues that these propositions confuse the need to update clinical criteria for a need to change the definition of brain death. According to him, the people making this proposition “want to change the definition of death to meet the current clinical criteria … rather than [make] better criteria.” This is wrong-headed because being “dead enough” is not an adequate reason to change the definition of death, and this will lead to significant legal and moral problems.

The first proposed change is problematic because it can be inaccurate. DeCock admits that it can be fitting if we are specifically talking about cardiopulmonary death: “Permanent basically means … we could resuscitate you, but we are not going to.” However, the change makes no sense in relation to how brain cells die through a process called necrotic liquefaction. Upon substantive damage, a brain cell will degrade into a liquid state and become reabsorbed by the body. Clearly, this is an irreversible process rather than permanent state, and the latter could include a number of neurological conditions in which the patient is still alive, such as the minimally conscience state. Undoubtedly, then, this first proposition is problematic. But the second proposed change is certainly insidious.

Some propose to replace the notion of whole-brain death with three problematic criteria: permanent coma, lack of respiratory function, and absence of a brain stem reflex. These criteria are problematic precisely because they fail to acknowledge all the essential parts of the whole brain. DeCock opposes this change because it is inconsistent with the truth of human biology. He points out that the activity of the “hypothalamus is really the crux of this debate” because it regulates the body’s homeostatic activities. If it remains active, then the body may still be functioning as a whole. Some people, he claims, argue that the hypothalamus does not matter for determining brain death. DeCock admits that there are not suitable techniques for evaluating hypothalamic activity when determining brain death. However, this fact does not justify the proposed changes.

Nevertheless, DeCock believes that the UDDA should be updated to increase the accuracy of the current clinical criteria. He exemplifies this with a disturbing thought experiment about a legally dead man and a legally dead woman. Since a brain-dead man under this definition can still ejaculate and a brain-dead woman can still gestate a pregnancy, “using completely ordinary means, a dead man and a dead woman, by the current clinical criteria, could give rise to a living being.” This is utterly absurd. DeCock predicts that improvements to clinical criteria, which would avoid counterintuitive situations like this, will reverse the current trend of increasing the organ donor pool as much as possible, and we will likely see “the number of chronic brain-dead patients go down.” In addition to calling for better diagnostic criteria, DeCock supports one of the proposed changes, an ability for people to opt out of the determination of brain death.

Clearly, we need to be certain that the people we say are dead really are dead. Admittedly, there is some ambiguity about death in the current language of the UDDA, but this is not so much that we fail to understand the reality of death. As DeCock clarifies, no one needs to have absolute certitude about death. To the contrary, people need to trust with prudential certitude that someone really is dead. This is no different than the certitude of ordinary experience. The UDDA should not deviate from our ordinary awareness and experiences of death. Death is a reality not a consensus. For this reason, DeCock affirms the necessity of the third proposition, which calls for an opportunity to opt out for people who do not want to be examined for brain death. However, this is not good enough. We need to leave our current language about brain death alone while also changing the current clinical criteria to more accurately reflect all parts of the brain that should be accounted for in the very concept of whole-brain death.

Colten Maertens-Pizzo works for the Archdiocese of Chicago Catholic School System.