Bioethics Forum Essay
An Incoherent Proposal to Revise the Uniform Determination of Death Act
It has been 50 years since the medical profession adopted the determination of death according to neurological criteria, known as “brain death.” This doctrine was codified in 1981 in the Uniform Determination of Death Act (UDDA), which declares, “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.”
In a recent article in Annals of Internal Medicine, Ariane Lewis, Richard Bonnie, and Thaddeus Pope identify four problems with the UDDA and its implementation, and propose a revised formulation. One of their reasons for revising the UDDA is the long-known fact that hormonal functions originating in the hypothalamus in the brain can continue in a patient who satisfies the diagnostic standards for brain death. Thus, a revision to the UDDA should indicate “whether hormonal functions are included in ‘all functions of the entire brain, including the brain stem’.” Describing recent lawsuits challenging the determination of death by neurological criteria, the authors note, “This raised the question of whether the pituitary gland and the hypothalamus are part of the ‘entire brain’. If they are, the accepted medical standards for DNC [death by neurological criteria] (which do not test for cessation of hormonal functions) are not consistent with the statutory requirements for declaration of death.” However, even raising the query as to whether the hypothalamus and posterior pituitary are part of the “entire brain” is absurd: it is an undisputable anatomical fact that they are part of the brain. Any proposed revision to legal statutes that ignores or obfuscates this undeniable fact is unacceptable.
Further, the authors’ revised formulation of the UDDA does not make it transparent whether or not the preservation of neurohormonal functioning is consistent with the neurological determination of death. Their revised formulation states that individuals are dead according to neurological criteria if they have sustained “irreversible cessation of functions of the entire brain, including the brainstem, leading to unresponsive coma with loss of capacity for consciousness, brainstem areflexia and the inability to breathe spontaneously.” The italicized phrase that is appended to the reaffirmed language of the UDDA “delineates the specific functions of the brain that must be lost.” It seems intended to provide greater clarity to the UDDA. It does not: the triad of unresponsiveness, brainstem areflexia, (absence of brain stem reflexes) and apnea do not adequately identify the condition of irreversible cessation of functions of the entire brain, particularly the functions of the hypothalamus. The authors do, however, suggest an alternative formulation: simply add to the UDDA’s neurological determination of death—“the irreversible cessation of all functions of the entire brain”—the phrase, “. . . with the exception of hormonal function.” No justification is offered for this ad hoc and physiologically baseless move. In any case, one expects a revision of the UDDA to promote clarity, not confusion.
Moreover, the authors’ proposed revision of the UDDA ignores the elephant in the room. The established doctrine of medical determination of death according to neurological criteria is predicated on the assumption that brain death constitutes biological death—the irreversible cessation of integrative, homeostatic functioning of the organism as a whole. However, over the past 30 years it has become well-known, but generally ignored or not appreciated by the medical and legal professions, that individuals who meet the standard tests for brain death remain biologically living as manifested by a wide variety of functions, including respiration, circulation, digestion and excretion of wastes, temperature control, wound-healing, stress response to incisions, and, in the case of pregnant women, even the gestation of a healthy fetus for several months. The fact that these functions require the support of mechanical ventilation and other medical interventions no more makes these individuals dead than other patients without profound brain damage who need life-sustaining treatment to survive.
Medicine declares itself to be a science, or at least to be guided by science. Therefore, its concept of death must be a scientific, biological concept that is justified by empirical evidence and the usual standards of scientific evaluation, such as coherence with other well-accepted scientific claims, unification under a common ontological framework, simplicity, and so on. Accordingly, the medical determination of death should not attempt to identify conditions for human death other than biological death, such as loss of personhood.
We contend that the way to revise the UDDA is to drop entirely the neurological determination of death, relying instead on a much simpler formulation limited to the first part of the UDDA: “An individual who has sustained irreversible cessation of circulatory and respiratory functions is dead.” The policy implications of abandoning the neurological determination of death, which we and others have addressed elsewhere, are complex, but they need to be faced for determination of death to be based on a coherent biological foundation.
Franklin G. Miller, PhD, is a professor medical ethics in medicine at Weill Cornell Medical College and a Hastings Center Fellow. Michael Nair-Collins, PhD, is an associate professor of behavioral sciences and social medicine at Florida State University College of Medicine.
This essay is an excellent illustration of the problems with most writings on the definition of death. The discussion of the definition of death would be best served if authors defined terms precisely, avoided false assumptions, and utilized Bernat’s threefold outline for a definition of death: concept, biological correlate, and testing.
The authors are correct that the proposed changes in the UDDA neglect to supply an underlying concept of life and death that would justify the changes in biological state. However, the fact that the authors did not supply one does not mean that one cannot exist. For example, one could follow Patrick Lee’s suggestion that integrated function of the brain is the essence of life, and then come up with a reason why hypothalamic/pituitary function does not fit with a definition of brain integrated function. Or one could clam, per Winston Chiong, that life is represented by more than one function, and that death is the irreversible cessation of all of them. In this case, those functions would be respiration, brainstem function, and consciousness. Obviously these choices would need to be justified on the conceptual level. But on the positive side, this suggested change does provide a biological state defined as death, and tests necessary to determine if that state is present or not.
The definition suggested by Miller and Nair-Collins suffers from significant ambiguity. They suggest that the death of an individual occurs with irreversible cessation of circulation and respiration. The first ambiguity is the definition of ‘individual.’ In the premodern age of medicine, it could be assumed that all the organs of the body were interdependent, and the body could be considered one whole. it was impossible to support the function of an organ independent of the rest. With the advent of transplants, circulation pumps and artifical organs, organs can continue to function independent of each other. It is therefore necessary to define what is a human body/individual, and what are just functioning parts.
The other ambiguity is the term ‘irreversible cessation of circulation.’ As long as the veins and arteries are patent, circulation is always possible, whether with a heart, an artificial heart or a bypass pump. Consider a patient whose heart stopped and then CPR was instituted by failed to restart the heart. At some point the patient could be declared dead, but the very next chest compression would provide circulation. While some may invoke some doctrine of futility or engage in some parsing of ‘permanent versus irreversible’, the point is that the definition being proposed is actually useless if interpreted with precision. Contrast this patient with one who has an artificial heart connected to an external power supply that accidentally becomes unplugged. That patient too could be seen as having irreversible loss of circulation(and respiration when the brain stops functioning after a short period of time without blood flow). But one would hope that this second patient would not be declared dead, and the circulation restored. These examples illustrate that it isn’t the cessation of circulation that is important, but the effect the cessation of circulation has on the anatomy and function of in the body.
Those who advocate for brain death(in its various forms) identify the function of the human brain as the essence of human life, and therefore the cessation of human brain function(in some iteration) as the cessation of human life. Those opposed to brain death seem to coalesce around the idea of ‘integrated function.’ But they have failed to address the third tier of Bernat’s definition- identifying the exact amount of integrated function and the tests that must be performed and the results needed to distinguish between enough integrated function to qualify as life, and the amount that does not qualify as life. Doing so would also necessitate justifying exactly what that amount is the line between life and death, and not more or less. They have avoided these difficult(and perhaps insurmountable) questions by using ambiguous language and employing false assumptions.
There are other problems that the opponents of brain death face. One is that of justification of human moral status. If one assumes that all alive human’s have full moral status and that alive animals have a different moral status, and then state that human life is determined by the presence of integrated function, then one essentially states that having human integrated function qualifies for full moral status, but that having animal integrated function does not. However, the internal organs(essentially all who support ‘integrated function’ claim that brain function is not necessary for the presence of integrated function) that contribute to integrated function are interchangeable between humans and animals. While there are demonstrable functional differences between human brains and animal brains, xenotransplantation of essentially all internal organs have been done, without, to my knowledge, demonstrable change in the integrated function. Therefore if the claim is being made that the basis for human life should be the same as for non-human life, there needs to be a justification for treating human life differently .
Another problem faced by the opponents of neurological definitions of life and death is illustrated by Ashley and Brittney Hensel, who are conjoined twins. They each have a head and functioning brain, but share a body. Unless neurological function is considered the basis of life, they cannot be considered twins, and must be considered one person.
the discussion above illustrates how no single definition of death is free of critique. While we are searching for THE definition of death, at this point it is elusive. I suggest that the conversation is better served by considering it a search for ‘the best’ definition of death. Therefore, while it is possible to illustrate the problems with a definition, unless a more coherent definition is suggested, the one under critique can still be considered superior. I think that the discussion will benefit significantly if authors avoid false assumptions, address Bernat’s tiers of definition, and focus not narrowly on ‘is the patient who has lost neurological function dead or not?’ but on a comprehensive definition of what is the essence of human life, and all the ramifications of that idea.
A Double Standard for the Determination of Death
In their Bioethics Forum Essay1, Miller and Nair-Collins criticize Lewis and colleagues’ recent publication in the Annals of Internal Medicine2 that calls for revision of the Uniform Determination of Death Act (UDDA). To their credit, Lewis and colleagues attempt to bolster the public trust in the medical profession by rectifying an unfortunate misunderstanding created by literal interpretation of the definition of brain death in the 1981 Uniform Determination of Death Act. That definition, “the irreversible cessation of all functions of the entire brain including brainstem”, is interpreted by Miller, Nair-Collins and others opposed to brain death as precluding the determination of death due to preserved neuroendocrine function in some patients. As a corollary, they call for repudiation of irreversible loss of brain function as a recognized mechanism of death.
Brain death, or death by neurological criteria, is notably different from cardiac death for a number of reasons, two of which are germane to this discussion. First, application of organ sustaining technology to bridge to transplant is an option for irreversible cardiac injury but not for the brain. Nonetheless, organ sustaining technology is rarely applied in irreversible cardiac injury despite the potential restoration of a valued life. A physician’s determination of cardiac death is readily accepted without the expectation that informed consent is requisite to fulfill this professional obligation in a timely manner. Ironically, in those who are fortunate enough to receive a donated heart, that altruistic gift can originate from only one source, a brain dead donor.
Conversely, there remains a minority who lobby for the indefinite use organ sustaining technology in brain dead individuals. These unfortunate souls for whom transplantation is not an option, will never regain consciousness, spontaneously breathe, or independently sustain the viability of other organ systems including the heart. Indefinite use of organ sustaining technology in brain dead individuals serves not to preserve a life, but only to sustain an existence that few of us would choose if given the opportunity to exercise our autonomy in this context.
A second difference between brain and cardiac death stems from the recognition that preserved viability of some cardiac cells undoubtedly occurs in irreversible cardiac injury. This preservation of cellular function is insufficient to preserve the vital function(s) of that organ and remains covert. In the brain, preservation of isolated cellular function may be readily evident (at least temporarily and in some cases) as manifested by preserved neuroendocrine function. That we are aware of the preserved viability of some brain cells while unaware of the viability of their cardiac counterparts provides no cogency in an attempt to dissociate the significance of these two mechanisms of death. There is neither the requirement, nor capability, to determine that every cell in the heart is dead in cardiac death. To impose that requirement in brain death promotes a double standard as in either case, the fundamental functions of these organs (perfusion, consciousness, spontaneous ventilation) and the viability of the organism as a whole is irreversibly lost. There is no coherent means to dissociate these truths and any attempt to do is specious.
The purpose of laws is to provide uniform standards that allow individuals with differing values populating pluralistic societies to coexist as harmoniously as possible. Lewis and colleagues should be applauded in their coherent attempt to improve the public trust in the medical profession by attempting to achieve uniformity and biological coherency in death determination. They call for a revision in the UDDA that makes explicit that irreversible injury to the irreplaceable function of an organ, not irreversible injury to every cell in that organ, results in biological death. By doing so, they may, consciously or not, avoid an erosion of the public trust risked by the promotion of false hope.
1. Miller FG, Nair-Collins M. An Incoherent Proposal to Revise the Uniform Determination of Death Act. Hasting Forum Bioethics Essay. January 23, 2020
2. Lewis A, Bonnie RJ, Pope T. Its Time to Reform the Uniform Determination of Death Act. Ann Intern Med. 2020;172:143-144.
I have read with great interest both the initial post written by Franklin Miller and Michael Nair-Collins, and the response posted by Ariane Lewis, Richard J. Bonnie and Thaddeus Pope. Thank you for providing us this stimulating debate. Though the revisions to the Uniform Determination of Death Act (UDDA) are both legally and ethically required, I question if the methods proposed in the article published by Lewis, Bonnie and Pope in the Annals of Internal Medicine will help us achieve such meaningful changes.
The addition of guidelines to establish a standard of care, as well as guidance regarding notification/consent to performing a determination of death by neurologic criteria (DNC) will be useful to standardize practice and will help to avoid certain legal issues that have recently resulted from this lack of standardization. That being said, I worry that by simplifying the definition of DNC and limiting it to what we think we know and understand may have unexpected consequences. Critics may, as they have in the past, accuse us of improvising which potentially can lead to the public losing even more confidence in the field of medicine. Though Miller and Nair-Collins’ arguments regarding the ongoing hormonal function of the brain despite the notion of “whole brain death” may have been a philosophical analysis of a real-world problem, their weariness to accept such changes in the definition of DNC may echo the general public’s growing mistrust in medicine. As physicians and scientists, we understand the implications and justifications for putting aside/excluding this residual hormonal function, but laypersons may initially find this difficult to fully comprehend. Such changes will, therefore, need to be accompanied by additional information/education for the general public if we hope to obtain their support and regain their confidence.
If we are going to revise the UDDA, why not also revise the definition of circulatory death. As it stands, many authors criticize the notion of irreversibility included in this definition. These authors state that in the case of donation after circulatory death (DCD), if we were to proceed with a resuscitation after the patient’s heart has stopped, the patient’s heart would most likely restart (though the patient would be left with severe neurological damage). The cessation of circulatory and respiratory functions are, therefore, not irreversible. Some authors have proposed to change “irreversible” to “permanent” as a decision has been made by the healthcare team, in conjunction with the family, not to resuscitate so that the patient can donate their organs.
Looking at the bigger picture, we can see that the UDDA clinically serves two purposes: it defines death to permit organ donation, and it defines brain death to avoid having patients who have no potential for neurologic recovery occupying intensive care beds, and using resources which are currently both limited and in high demand. Practically speaking, the proposed revisions will most likely not result in any changes to our everyday medical practice. Patients and families who believe that quality of life should prevail will continue to request a dignified death through withholding/withdrawal of life-support. Those who do not believe in DNC, who distrust the medical system or who want to live regardless of their quality of life will continue to oppose the UDDA, even with the implementation of these revisions. Rarely do we see patients and their families fall between these two distinct standpoints: though some may take more time to clearly express their beliefs and values, most will choose a specific side. The revisions will neither accelerate this process nor help to decide where to stand.
Will these revisions to the UDDA change the rate of organ donation in the country? Though they may clarify definitions and appease the conscience of certain ethicists and clinicians, the overall effects of the revisions will most likely be negligible – gains will be made by clinicians becoming more comfortable with DNC, while losses will be felt if laypersons become alienated if they perceive these changes as an attempt to adapt the law to current practices. The revisions proposed in the article in the Annals of Internal Medicine, and the revision to the definition of circulatory death are important and progressive changes, however, we are still far from the endgame – to truly improve the rate of organ donation around the world. As many authors such as Truog have explained, putting aside the dead donor rule (DDR) will most likely render obsolete the controversial definitions contained in the UDDA. Many criticize this idea by stating that we will lose public confidence and, consequently, their buy-in/support for organ donation. Though opt-out programs may provide more organs for transplant, the risks to vulnerable populations limit such legislation in the United States. Why not provide those who want to donate their organs the best opportunity to donate the highest number and the best quality of organs by suspending the dead donor rule?
Again, thank you to all of the authors for providing these thought-provoking posts.