Statement in Support of Revising the Uniform Determination of Death Act and in Opposition to a Proposed Revision
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The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine
doi:10.1093/jmp/jhab014
Statement in Support of Revising the Uniform
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Determination of Death Act and in Opposition
to a Proposed Revision
D. ALAN SHEWMON*
University of California Los Angeles, Los Angeles, California, USA
*Address correspondence to: D. Alan Shewmon, MD, David Geffen School of Medicine at
UCLA, 14445 Olive View Dr, Sylmar, CA 91342, USA. E-mail: ashewmon@mednet.ucla.edu
Discrepancies between the Uniform Determination of Death Act
(UDDA) and the adult and pediatric diagnostic guidelines for
brain death (BD) (the “Guidelines”) have motivated proposals to
revise the UDDA. A revision proposed by Lewis, Bonnie and Pope
(the RUDDA), has received particular attention, the three novelties
of which would be: (1) to specify the Guidelines as the legally rec-
ognized “medical standard,” (2) to exclude hypothalamic function
from the category of “brain function,” and (3) to authorize phys-
icians to conduct an apnea test without consent and even over a
proxy’s objection. One hundred seven experts in medicine, bioethics,
philosophy, and law, spanning a wide variety of perspectives, have
come together in agreement that while the UDDA needs revision, the
RUDDA is not the way to do it. Specifically, (1) the Guidelines have
a non-negligible risk of false-positive error, (2) hypothalamic func-
tion is more relevant to the organism as a whole than any brain-
stem reflex, and (3) the apnea test carries a risk of precipitating BD
in a non-BD patient, provides no benefit to the patient, does not
reliably accomplish its intended purpose, and is not even absolutely
necessary for diagnosing BD according to the internal logic of the
Guidelines; it should at the very least require informed consent,
as do many procedures that are much more beneficial and less
risky. Finally, objections to a neurologic criterion of death are not
based only on religious belief or ignorance. People have a right to
not have a concept of death that experts vigorously debate imposed
upon them against their judgment and conscience; any revision of
the UDDA should therefore contain an opt-out clause for those who
accept only a circulatory-respiratory criterion.
© The Author(s) 2021. Published by Oxford University Press, on behalf of the Journal of Medicine and Philosophy Inc.
All rights reserved. For permissions, please e-mail: journals.permissions@oup.comPage 2 of 35 D. Alan Shewmon
Key words: apnea test, brain death, diagnostic guidelines, hypo-
thalamic function, informed consent, medical standard, Uniform
Determination of Death Act (UDDA)
I. EXECUTIVE SUMMARY
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The Uniform Determination of Death Act (UDDA) was based on an assump-
tion, accepted at the time as medical fact, that the brain is the master inte-
grator of the body, such that when it ceases to function, the body would
literally “dis-integrate”; but that proved erroneous. There are inconsistencies
between the biological concept of death, the UDDA’s criterion of “irrevers-
ible cessation of all functions of the entire brain,” and the diagnostic proto-
cols currently considered the medical standard. A revision of the UDDA is
indeed long overdue. Apart from the 2008 President’s Council on Bioethics’
“vital work” rationale, which has its own problems, there are essentially
four alternatives to choose from: (a) truncate the UDDA to recognize only
a circulatory-respiratory criterion for death, (b) adopt a consciousness- or
personhood-based concept of death and revise the anatomical criterion ac-
cordingly, (c) adopt a criterion of irreversible apneic unconsciousness, or (d)
revise the neurological criterion of death somewhat, while recognizing it to
be a legal fiction or legal status.
This statement does not take a stance among those four approaches.
Rather, it strongly urges rejection of the specific revision proposed by Lewis,
Bonnie, and Pope (RUDDA), which features three key changes to the UDDA:
(1) to specify the current adult and pediatric diagnostic Guidelines (and fu-
ture revisions thereof) as the legally recognized “medical standard,” (2) to
exclude hypothalamic function from the category of “brain function,” and (3)
to authorize physicians to conduct an apnea test without consent and even
over the objection of a patient’s proxy.
Regarding the first proposed change, the adult and pediatric Guidelines—
and any future revision of them that conceptualizes brain death (BD) as a
purely “clinical” diagnosis—have a non-negligible risk of false-positive error
(misdiagnosing a live patient as dead). A clinical examination of a coma-
tose patient cannot exclude the possibility of return of some brain function.
Global ischemic penumbra (GIP; blood flow too low to support function
but sufficient to prevent cell death) is a potential mimicker of BD, and it
cannot be excluded with certainty by clinical examination, EEG, or currently
standard blood flow tests. The oft-repeated claim that there have been no
documented cases of misdiagnosis when the Guidelines were strictly fol-
lowed is false: documented false-positive diagnoses are listed and discussed.
These cases are undoubtedly the tip of an iceberg, since virtually all patients
declared BD are removed from support. Furthermore, the Guidelines sim-
plistically equate unresponsiveness with unconsciousness. Furthermore still,Statement re Revising the Uniform Determination of Death Act Page 3 of 35
they allow a deficiency in the clinical examination to be compensated for by
an electroencephalogram (EEG), even though an EEG measures functioning
of only part of the cerebral cortex and none of the brainstem; neither does it
establish irreversibility of nonfunctioning even of the cortical surface.
Regarding the second proposed change, the hypothalamus is part of
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the brain, and hypothalamic function is by definition a brain function.
Hypothalamic functions are more important to the “organism as a whole” than
any of the brainstem reflexes that the RUDDA would require to be absent.
To exclude hypothalamic function as irrelevant to the distinction between
organismal life and death is ad hoc and simply conceptual gerrymandering
in order to maximize the number of BD diagnoses.
Regarding the third proposed change, the apnea test is potentially risky (the
greatest risk being rarely even acknowledged, namely actually precipitating
the BD that it allegedly diagnoses), offers no benefit to the patient, and does
not reliably accomplish its intended role. It is not even absolutely required
to diagnose BD according to the internal logic of the Guidelines (if an apnea
test cannot be done or has to be aborted, BD can still be diagnosed by in-
clusion of an ancillary test). Given that the law requires informed consent for
many other, less risky and more beneficial procedures (and even to perform
an examination in general), it is not clear why the apnea test should be ex-
empt from this ethical and legal requirement.
Finally, objections to a neurological criterion of death are not motivated
solely by religious beliefs, as proponents of the RUDDA would have one
imagine. The neurologic criterion of death does not in fact enjoy the virtu-
ally unanimous endorsement that those proponents claim, but it continues
to be a topic of legitimate debate among scholars. Those who do not accept
the neurologic criterion, and desire to have their own death declared on the
basis of the traditional circulatory-respiratory criterion, have the right not
to have a concept of death imposed upon them contrary to their judgment
and conscience. Therefore, any revision of the UDDA ought to contain an
exemption clause for individuals who do not accept a neurologic criterion.
II. INTRODUCTION
The Uniform Determination of Death Act (UDDA) or some variant of it is
the statutory definition of death in all 50 states (President’s Commission,
1981). There is an inconsistency, however, between it and official diagnostic
protocols (Shewmon, 2018a; Bernat and Dalle Ave, 2019; Dalle Ave and
Bernat, 2020), so that many instances of declared BD1 do not fulfill the lit-
eral requirements of the law. The current reassessment of the UDDA by the
Uniform Law Commission is therefore opportune and long overdue. One
particular revision, proposed by Lewis, Bonnie, and Pope (the “RUDDA”),
would make three key changes: (1) to specify the current adult and pediatricPage 4 of 35 D. Alan Shewmon
diagnostic Guidelines (Wijdicks et al., 2010; Nakagawa et al., 2011) and fu-
ture revisions thereof2 as the legally recognized “medical standard,” (2) to
exclude hypothalamic function from the category of “brain function”, and (3)
to authorize physicians to conduct a potentially risky and non-beneficial pro-
cedure (the apnea test), which is not even absolutely required to diagnose
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“brain death,” without consent and even over the objection of a patient’s
proxy (Lewis et al., 2020a, 2020b; Miller and Nair-Collins, 2020).
The undersigned hereby present our view of the problems with the ex-
isting UDDA and especially with the RUDDA. We are also concerned that
both the UDDA and the RUDDA impose a brain-based concept of death on
those who conscientiously and legitimately reject it; therefore, we recom-
mend that any revision include an opt-out clause for those who accept only
a circulatory-respiratory criterion of death.
We span a wide range of professions, world views, and nationalities. We
do not necessarily agree with each other on all aspects of the brain-death
debate or on fundamental ethical principles. We do agree that the UDDA
needs to be revised and that the RUDDA is not the way to do it. Any re-
vision of the UDDA is bound to have a major ripple effect throughout the
world, and there is already an effort underway to standardize BD criteria
worldwide (Greer et al., 2020); therefore, the international scope of endor-
sers of this statement is appropriate, even though the matter at hand con-
cerns US law.
The online supplementary material contains a bibliography of scholarly
publications rejecting the physiological rationale for so-called “brain death,”
articulated by the originators of the UDDA. It is divided into two sections:
those publications rejecting a neurological criterion altogether and those re-
jecting the physiological rationale but endorsing a neurologic criterion on
some other, non-biological basis (most notably, on a consciousness/person-
hood or a societal-convention basis). The purpose of this bibliography is to
demonstrate that the issue continues to be actively and validly debated by
scholars in medicine, bioethics, and philosophy, contrary to the impression
of near unanimity that promoters of the RUDDA would like to convey.3
III. THE CURRENT UDDA AND THE CONCEPT OF DEATH
The reasoning behind the President’s Commission’s (1981) endorsement
of the UDDA was that BD is the same physiological state as traditional
(circulatory-respiratory) death, merely “masked” by the mechanical ven-
tilator and other forms of technological support. This understanding was
based on the assumption that the brain is the master integrating organ of
the body, so that its complete and irreversible non-function would cause the
body to cease being a unified organism, even if some parts of it might main-
tain vitality at the level of cells, tissues or organs.Statement re Revising the Uniform Determination of Death Act Page 5 of 35
Subsequent accumulated clinical experience with BD bodies proved this
assumption to be false. BD bodies are physiologically equivalent not to
traditional cadavers but to severely neurologically injured patients who are
almost but not quite BD. BD is indeed an “irreversible coma” (to use the
infelicitous title term of the 1968 Harvard Committee report [Beecher et al.,
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1968])—in fact, the most severe form thereof; but coma, whether reversible
or irreversible, is not biological death. One cannot say with semantic correct-
ness that a cadaver or corpse is comatose.
The President’s Commission report and its crown jewel, the UDDA, were
based on the medical science of the time; but in such a case, even perfect
logic applied to an erroneous premise leads inexorably to an erroneous con-
clusion. By the late 1990s, over 170 cases had been collected of BD patients
surviving longer than 1 week, many for several weeks, some for months,
and a few even for years (Shewmon, 1998) (the record at that time being
14½ years; that patient went on to survive a total of 20½ years in the state of
BD [Repertinger et al., 2006]). Such cases pulled the rug out from under the
Commission’s (1981, 17, 35) assertion of a relatively short time before car-
diac arrest despite the most heroic intensive care measures, as a supposed
clinical fact validating the premise that the BD body is not a true organism
but a disintegrating corpse attached to a ventilator moving air in and out of
the lungs.
Cases of “chronic BD” are certainly exceptional, but that is because the
motivation for prolonged support is exceptional: typically, cases of pregnant
women (to bring the fetus to viability) and families strenuously objecting
to the discontinuation of support despite the diagnosis of BD (especially
when the patient is a child). In general, a diagnosis of BD is a self-fulfilling
prophecy in terms of survival time, since the vast majority of cases either
become organ donors or have support discontinued within a few days of
diagnosis. Therefore, the rarity per se of chronic BD cannot be held up as
proof that BD patients are merely decaying corpses on ventilators.
Chronic BD cases are important to study, because they teach us much
about the physiological unity of the body in the absence of brain function.
Most notably, they exhibit homeostasis, wound healing, proportional growth
of children (unlike the disordered growth of tumors), and BD pregnant
women can gestate fetuses (Shewmon, 2001).
By now it is widely accepted that BD bodies are biologically living organ-
isms. The 2008 President’s Council on Bioethics, after an exhaustive study
of the BD literature and input from multiple experts, concluded in its “white
paper”:
The reason that these somatically integrative activities continue . . . is that the brain
is not the integrator of the body’s many and varied functions . . . no single structure
in the body plays the role of an indispensable integrator. Integration, rather, is an
emergent property of the whole organism . . . (2008, 40)Page 6 of 35 D. Alan Shewmon
If being alive as a biological organism requires being a whole that is more than the
mere sum of its parts, then it would be difficult to deny that the body of a patient
with total brain failure can still be alive, at least in some cases. (2008, 57)
The Council proposed a novel alternative rationale for why BD should be
considered death, namely the idea that an organism’s “fundamental work” is
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its goal-driven “commerce” with the environment, specifically breathing and
consciousness, so that the combination of irreversible apnea and irrevers-
ible unconsciousness is death, regardless what other brain functions might
be present and regardless of the body’s physiological status. The main criti-
cism against it is that the singling out of those two specific types of “com-
merce with the environment” is ad hoc. It ignores other forms of interaction
with the environment that BD bodies display and fails to explain why, if
(in the Council’s opinion) neither unconsciousness alone nor apnea alone
is death, the combination of the two should necessarily be death. The con-
ceptual soundness of the Council’s “vital work” rationale was called into
question from the moment it was first proposed (Miller and Truog, 2009;
Shewmon, 2009), and relatively few have been convinced by it, not even
the Council’s own Chairman, Dr. Edmund Pellegrino, and Council member
Alfonso Gómez-Lobo, both of whom wrote separate dissenting statements
(Gómez-Lobo, 2008; Pellegrino, 2008).
Although no one claims that irreversible apnea per se is death, many
physicians, bioethicists, and philosophers believe (contrary to the President’s
Council) that irreversible unconsciousness per se is death. The 1981
President’s Commission considered and rejected this position, recognizing
that if it justified BD, it equally justified considering and treating permanently
vegetative-state patients as dead. Although the Commission was not willing
to go that route, many at the time were, and even many more are now.
At the Third International Conference on Coma and Death in Havana
in 2000, the neurologist Fred Plum, one of the world’s greatest author-
ities on the topic, upon hearing Dr. Shewmon’s keynote address drawing
physiological parallels between brain-destroyed bodies (i.e., BD) and brain-
disconnected bodies (from high spinal cord transection), exclaimed in ex-
asperation during the question-and-answer session, “OK, I’ll grant you that
the brain-dead body is a living human organism, but is it a human person?”
(Sánchez Sorondo, 2007, 299)
That assertion, in the form of a rhetorical question, encapsulated in a
nutshell where the debate over the rationale for a neurologic criterion of
death currently lies, having shifted from the biological to the philosophical
domain, with the key issue no longer being the question of organismal inte-
grative unity, but rather concepts of personhood, personal identity, and the
essence of humanness.
In the wake of these developments, the UDDA is indeed in need of re-
vision, but not along the lines proposed by Lewis and colleagues. A moreStatement re Revising the Uniform Determination of Death Act Page 7 of 35
radical change of paradigm is called for. If the irreversible cessation of cir-
culatory and respiratory functions and the irreversible cessation of all brain
functions are not, in fact, the same physiological state—and they are defin-
itely not—then a coherent revision must abandon the bifurcated structure
of the 1981 UDDA and follow one of four alternative formulations, if the
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concept and criterion of death are to be aligned.
The first alternative, favored by some of the undersigned, would be to
stick with a biological concept of death, recognizing that this occurs upon
supracritical damage to multiple organ systems, the key three being the cir-
culatory, respiratory, and nervous systems. The corresponding criterion is
essentially the first arm of the original UDDA, which is simply the traditional
criterion for death from time immemorial up until 1968 (since the nervous
system is necessarily also rendered irreversibly nonfunctional if the circula-
tion of oxygenated blood irreversibly ceases).
This of course would have profound implications for heart-beating organ
transplantation. The President’s Council on Bioethics, which rejected a
“higher brain,” “personhood” type formulation (cf. 2008, 97), believed that
its novel rationale salvaged the neurologic criterion for a biological concept
(what they called “Position Two”). But the Council, with exemplary logical
rigor, acknowledged the practical consequence if that rationale were to turn
out to be invalid and the dead donor rule is to be retained:
If indeed it is the case that there is no solid scientific or philosophical rationale for
the current “whole brain standard,” then the only ethical course is to stop procuring
organs from heart-beating individuals. (2008, 12, emphasis in original)
The Council then proceeded to explain:
Organ transplantation could continue, but with exclusive reliance on donors whose
death is determined by the cardiopulmonary standard under a controlled DCD
protocol . . . In the majority view of the Council, such a step is not necessary, how-
ever, since today’s “whole brain standard” is, in fact, conceptually sound. (2008, 12)
A few experts (including some of the undersigned), believing that the dead
donor rule is as anachronistic as BD, do not accept the Council’s conclu-
sion about the ethical implication for transplantation if BD is recognized as
not death after all (Collins, 2010; Miller et al., 2010; Miller and Truog, 2012;
Truog et al., 2013; Truog, 2016). Rather, they consider that, since BD justifies
allowing death to occur by withdrawal of support, prior consent for dona-
tion would just as well justify making death occur by the removal of organs.
Whether the dead donor rule should be considered sacrosanct is obviously a
critical issue, but a completely separate one from how to determine whether
a patient is dead in the first place.
A second alternative, favored by others of the undersigned, would be
to endorse a non-biological, consciousness-based, “higher brain” concept of
death. The supplementary bibliography (supplementary material online) listsPage 8 of 35 D. Alan Shewmon
many references advocating such a concept. The corresponding criterion
would simply be the irreversible cessation of consciousness. Brainstem re-
flexes, hypothalamic function, and even breathing would have nothing to
do with the distinction between human life and death. Such a criterion
would imply that many more patients besides those currently diagnosed as
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BD are dead, including that subset of patients in “unresponsive wakefulness
syndrome” (UWS, formerly called “persistent vegetative state” [Laureys et al.,
2010]) who are truly inwardly unaware, even though they breathe spontan-
eously. A major practical problem is that there is no reliable way to distin-
guish unresponsive patients who are inwardly conscious from those who are
not (Giacino et al., 2018; Edlow et al., 2021). Nevertheless, if UWS patients
were excluded from consideration, the criterion could apply to patients who
would now be considered BD, as well as to other patients with irreversible
and total damage to the parts of the brain required for consciousness, even
if some non-consciousness-related brain functions remained. Surveys reveal
that around half of US neurologists, and a third to a half of other specialists
who regularly deal with BD, implicitly hold such a mentalistic, “higher brain”
concept (Joffe and Anton, 2006; Joffe et al., 2007; Joffe et al., 2012).
A third alternative, favored by still others of the undersigned, is the
physiological-psychological hybrid of irreversible apneic unconsciousness,
which is not claimed to be biological death (in contrast to the 2008 President’s
Council) but simply a “bright line” placed by societal agreement about what
most essentially counts for classification as a live human being (Truog,
Krishnamurthy, et al., 2020; Truog, Paquette, et al., 2020). This approach has
been in place for decades in the United Kingdom and some Commonwealth
countries, and it seems to be gaining traction in the United States.
A fourth approach, favored by some of the undersigned and not mutually
exclusive with the third, is to recognize BD explicitly as a legal fiction or
legal status: although not biological death, it can be legally treated as death,
in the same way that people with very poor eyesight can be considered le-
gally blind and corporations can be considered legal persons (Taylor, 1997;
Shah and Miller, 2010; Shah et al., 2011; Shah, 2015). In fact, they point out,
this has been the state of affairs already for decades, merely not openly ac-
knowledged as such.
Not to choose one of these alternatives would be to continue to “muddle
through,” with a statutory criterion of death that does not correspond to the
(biological) concept that was originally believed to justify it (Miller, 2009;
Miller and Truog, 2009; Miller et al., 2010; Nair-Collins, 2015). Although so-
ciety could continue to “muddle through” for the sake of transplantation, this
is not a stable, long-term state of affairs. We the undersigned hold diverse
opinions regarding the optimal way to revise the UDDA, and this document
does not advocate a particular approach; what unites us, rather, is opposition
to a proposed revision that has received much recent attention.Statement re Revising the Uniform Determination of Death Act Page 9 of 35
IV. PROBLEMS WITH THE RUDDA
In light of the above considerations, the RUDDA is seen to be merely a
superficial cosmetic makeover that leaves the core problems with the UDDA
untouched (Miller and Nair-Collins, 2020; Nguyen, 2020). But there are add-
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itional reasons to reject it: (1) the Guidelines that are being proposed as the
statutorily mandated medical standard entail a non-negligible risk of mis-
diagnosing a live patient as dead (contrary to the claims of their drafters and
proponents), (2) the elimination of hypothalamic function from the category
of “brain function” is ad hoc and illogical, and (3) the proposed elimination
of consent for the apnea test violates patients’ fundamental right against bat-
tery. Finally, a properly revised UDDA should contain an opt-out clause that
respects patients’ freedom of conscience regarding a concept of death that
is legitimately debatable.
Irreversibility of Non-function
Both the UDDA and the RUDDA specify that the loss of brain function be
“irreversible.” The only possible basis for irreversibility (in general) is the
critical lesioning of the structure responsible for the function in question.
Such “de-struction” is not synonymous with annihilation; it could be nothing
more than irreversible critical changes at the molecular level in a structure
that still appears grossly intact: that structure is “destroyed” in the same sense
that a lobster is destroyed upon being boiled in a pot. The pathophysiology
of BD classically involves a vicious cycle, beginning with some brain in-
jury, leading to brain swelling, causing increased intracranial pressure (due
to the closed skull), causing decreased blood flow to the brain, causing
further brain injury, etc., finally ending in no blood flow and total brain in-
farction (death of all brain cells). In fact, one of the earlier terms for what is
now called “brain death” was “total brain infarction” (Ingvar, 1971; Swedish
Committee on Defining Death, 1984).
The Guidelines and their proponents claim that BD is essentially a “clinical
diagnosis,” meaning a diagnosis that can be made by bedside examination
alone (American Academy of Neurology, 1995; Wijdicks, 2010; Nakagawa
et al., 2011). This is false. The clinical examination assesses a handful of
brain functions, but gives no direct window into the structural integrity of
the parts of the brain responsible for those functions, and hence no direct
insight as to the reversibility or irreversibility of the absence of those func-
tions. Rather, irreversibility is allegedly inferred from knowledge of the cause
of the brain damage, exclusion of reversible factors that can interfere with
brain function, and waiting a period of time (the “observation period”) that
is supposedly sufficient to guarantee the non-return of function. But there
are two key problems that invalidate such an inference: (1) not all reversible
factors can actually be excluded purely clinically, and (2) the observationPage 10 of 35 D. Alan Shewmon
times specified in the Guidelines are not based on any evidence that they
actually guarantee irreversibility (and over the decades they have become
shorter and shorter for the sake of transplantation).
Concerning #1, the fulfillment of prerequisites and the exclusion of
confounders require laboratory tests and imaging, making the diagnosis
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more than just a bedside one (Dalle Ave and Bernat, 2020). High spinal
cord injury from brainstem herniation is often present but unacknowledged
as a confounder (Joffe et al., 2010). One reversible factor in particular that
was brought to light in 1999 but remains downplayed or simply ignored by
the drafters and promoters of the Guidelines is GIP. This is a generalization
of the phenomenon of (focal) ischemic penumbra in the field of stroke.
Surrounding the central necrotic core of a stroke is a doughnut-shaped area
of tissue in which blood flow is just enough to prevent necrosis but insuffi-
cient to support function. The goal of stroke therapy is to salvage as much
of the penumbral tissue as possible, so that upon restoration of greater blood
flow, its function also returns.
In a 1999 publication, the Brazilian neurologist Cicero Coimbra (1999)
pointed out that, as brain blood flow drops from normal to zero in the
course of the vicious cycle ending in BD, it necessarily passes through
the ischemic penumbra range. This is not a hypothesis but a mathemat-
ical necessity. The clinically relevant question is therefore not whether
GIP occurs but how long it might last. If, in some patients, it could last
more than a few hours, then it would be a supreme mimicker of BD,
appearing exactly like BD by bedside clinical examination, yet the non-
function (or at least some of it) would be in principle reversible. Moreover,
standard tests of intracranial blood flow (which are not even required by
the Guidelines, unless there is some deficiency in or doubt concerning the
clinical examination) may lack the precision necessary to distinguish be-
tween penumbra-level flow and no flow. Thus, by ignoring the possibility
of GIP and insisting that BD is a strictly “clinical” diagnosis, the Guidelines
violate their own first prerequisite of excluding all possible confounders
and mimickers of BD.
Defenders of the Guidelines point to the claim, repeated mantra-like, that
there has been no documented case of recovery of any brain function after
strict fulfillment of the adult or pediatric Guidelines:
In adults, recovery of neurologic function has not been reported after the clinical
diagnosis of brain death has been established using the criteria given in the 1995
AAN practice parameter. (Wijdicks et al., 2010, 1912)
The attendees [at the October 2016 multisociety BD summit] further agreed that the
2010 AAN practice guideline is the contemporary paragon for brain death determin-
ation, as there have been no documented cases of recovery of neurologic function
after determination of brain death provided the parameter is appropriately followed.
(Lewis et al., 2018a, 425)Statement re Revising the Uniform Determination of Death Act Page 11 of 35
Review of the literature from 1996 to 2009 demonstrated that when the American
Academy of Neurology guidelines were appropriately applied, there were zero
false-positive determinations of death. (Lewis et al., 2018b, 536)
The AAN is unaware of any cases in which compliant application of the Brain Death
Guidelines led to inaccurate determination of death with return of any brain func-
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tion, including consciousness, brainstem reflexes, or ventilatory effort. (Russell et al.,
2019, 229)
In fact, there are no reports of children recovering neurologic function after meeting
adult brain death criteria based on neurologic examination findings. (Nakagawa
et al., 2011, 2145)
There are no reports of any person surviving after being declared dead by neuro-
logic criteria,” said Nakagawa, who helped write national guidelines for the de-
termination of brain death in infants and children. “Reports of people who have
survived following a determination of neurologic death are the result of diagnostic
error, and these patients did not meet initial criteria for neurologic death.” (Sanchez,
2016)
Even if the claim were true, it would prove nothing, since with only very
rare exceptions, essentially all cases of BD either have support withdrawn or
organs removed within a few days of the diagnosis, insufficient time to de-
termine whether any brain function might have returned if given the chance.
More importantly, it is not even true (Nair-Collins and Miller, 2019, 2020),
and its continued proclamation by proponents of the Guidelines is simply
disingenuous. Case reports to the contrary from the medical literature are
listed below in reverse chronological order.
Latorre et al. (2020) reported the case of a 59-year-old man who met clin-
ical criteria minus an apnea test, which was deemed unsafe due to hemo-
dynamic instability. Following the protocol of the adult Guidelines, a blood
flow test (single-photon emission computed tomography, SPECT) was per-
formed, which showed no intracranial flow. The family consented to organ
donation, but the following morning he demonstrated a cough reflex as well
as “intermittent spontaneous respirations and extensor posturing of the right
arm and leg to noxious stimulation.” The authors interpreted this case as a
false-positive SPECT scan, but it was also a false-positive diagnosis of BD
following the Guidelines.
A pediatric counterpart to that case was reported by Shewmon (2017),
involving a 2-year-old boy with a severely crushed skull after being run over
by a car. Because of hemodynamic instability, an apnea test could not be
performed safely with the first BD examination, so an EEG was performed,
which was probably isoelectric (“probably” on account of rare, low-amplitude
waves that were probably artifact but couldn’t be known with certainty to
be so). As required by the Guidelines in such a circumstance, a radionuclide
blood flow test was performed, which definitely showed no intracranial
flow. With the second BD examination, an apnea test was attempted, almostPage 12 of 35 D. Alan Shewmon
meeting the Guidelines’ minimum requirement of 60 mmHg and a 20 mmHg
minimum rise, with no sign of respiratory effort before it had to be ter-
minated because of oxygen desaturation. After declaration of death and
parental refusal of organ donation, the ventilator was withdrawn. The boy
became markedly bradycardic and cyanotic, but after 2 or 3 minutes (pos-
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sibly longer), he began to breathe spontaneously, most likely exemplifying
the point made by Joffe et al. (2010) that the hyperoxygenated apnea test
fails to assess hypoxic respiratory drive. Like Latorre and colleagues’ adult
case, this case involved both a false-positive blood flow test and a false-
positive diagnosis of BD following the Guidelines.
Hansen and Joffe (2017) reported two cases that could have fulfilled
Canadian and US Guidelines but manifested brainstem functions. In one,
a 9-month-old, during the second examination an oculocardiac reflex was
present (absence of which is not required by the Guidelines, although it is
by the UDDA). In the other, a 15-year-old, the first apnea test was positive
(no respiratory effort with paCO2 of 62 mmHg), but spontaneous respiration
occurred after apnea had been documented during the second apnea test
with a paCO2 of 61 mmHg.
The case of Jahi McMath probably constitutes the best evidence for the
clinical relevance of GIP and the inability of standard ancillary tests to rule
it out (Machado et al., 2018; Shewmon, 2018b, 2018c). Jahi was 13 years
old when diagnosed BD on December 12, 2013. The diagnosis was un-
questionably made according to the Guidelines, was confirmed by a court-
appointed expert 11 days later, and was reinforced by four isoelectric EEGs
and a radioisotope scan showing no intracranial blood flow. After a highly
publicized court fight and transfer from California to New Jersey (the only
state with a religious exemption from death declared by neurologic criteria),
Jahi survived for 4½ years until succumbing to abdominal complications on
6/22/2018. Most of that time she was in her mother’s apartment, receiving
no more support than a ventilator, nourishment via feeding tube, various
medications, and nursing assistance. (Contrast that with many terminally ill
patients with multisystem failure in ICUs, comatose and ventilated but not
BD, who everyone agrees are alive.)
If Jahi ever had truly absent blood flow, her brain would have been totally
infarcted and the dead tissue would gradually have liquefied, as in rare cases
of chronic BD (Shewmon, 1998; Repertinger et al., 2006). By comparison,
Jahi’s MRI 9½ months after the diagnosis of BD showed gross preservation
of the cortical ribbon, deep gray nuclei (thalamus and basal ganglia), and
cerebellum (Machado et al., 2018). Obviously, there was never a time when
her brain had truly no blood flow, regardless what the radionuclide scan on
December 23, 2013 may have shown. Absence of function due to low blood
flow despite preservation of structure implies GIP (by definition).
A key question in Jahi’s case is whether the grossly preserved gray matter
was also sufficiently preserved on the microscopic and molecular levels toStatement re Revising the Uniform Determination of Death Act Page 13 of 35
support function. Months after the diagnosis of BD, Jahi manifested me-
narche, with three menstrual periods documented in her medical records,
and she continued to exhibit pubertal development during the years after
meeting BD criteria. Menstruation and puberty require functioning of the
part of the base of the brain called the hypothalamus. That, in itself, rules out
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BD as defined by the UDDA. The RUDDA, however, would consider such
brain functions irrelevant to life/death status; but one hardly needs a medical
degree to know that corpses do not menstruate or undergo puberty.
Several months after the diagnosis of BD, family members began to sus-
pect that Jahi sometimes responded to simple commands, and they docu-
mented many instances of intermittent responsiveness through video
recordings. Response to command was also eye-witnessed by non-family
members, including home nurses, Jahi’s attorney Christopher Dolan, her
primary physician Dr. Alieta Eck, and Dr. D. Alan Shewmon. The latter pre-
sented representative video clips at the 2018 Harvard Bioethics Symposium
on BD, and they are still available for viewing on the internet.4 Many of the
apparent responses do not resemble any of the types of involuntary move-
ment known to originate endogenously in the spinal cord. Shewmon (2018b,
2018c) has performed statistical analyses on the videos and concluded that
the movements cannot be explained as chance occurrences of spontaneous
involuntary movements following commands. The video evidence has been
discounted by some as unscientific (it is surely unsystematic) and not cred-
ible (although certified by a forensic video expert as having been unaltered).
It would be fairer to say that some people with a vested interest in the val-
idity of the Guidelines will try as hard as possible to discredit any evidence
to the contrary. Apart from the videos, Machado et al. (2018) reported heart-
rate-variability evidence that Jahi distinguished her mother’s voice from age-
matched non-maternal voices.
Jahi’s case proves that GIP can thoroughly mimic BD, both clinically and
by standard blood flow tests, which are simply too insensitive to distinguish
low flow from no flow in every part of the brain.
Roberts et al. (2010) reported two adult patients who regained spontan-
eous respiration 11 and 28 hours after declaration of death. In an attempt to
minimize the negative implications for the Guidelines, the authors attributed
the false-positive diagnoses to “several unrecognized confounding factors,”
namely perilesional ring enhancement on CT scan, chronic otitis media with
mastoiditis, and cardiac arrest within 6 hours. But (1) the implication of
blood flow on the CT scan was irrelevant to what is supposed to be a purely
“clinical” diagnosis (which would have been made just the same if the CT
had not included contrast); (2) chronic otitis media with mastoiditis is not a
recognized “confounder” of the BD examination (furthermore, the authors
saw no abnormality upon otologic examination; and even if otitis hypothet-
ically might have interfered with the oculovestibular reflex with instillation
of ice water in the involved ear, the reflex in that clinical context would havePage 14 of 35 D. Alan Shewmon
been validly tested via the other ear5); and (3) regarding the 6-hour obser-
vation period, the original 1995 adult Practice Parameters had this to say: “A
repeat clinical evaluation 6 hours later is recommended, but this interval is
arbitrary” (American Academy of Neurology, 1995, 1013). The 2010 update
says: “If a certain period of time has passed since the onset of the brain in-
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sult to exclude the possibility of recovery (in practice, usually several hours),
1 neurologic examination should be sufficient to pronounce brain death”
(Wijdicks et al., 2010, 1915). The two patients were legitimate examples of
false-positive diagnosis.
Joffe et al. (2009) reported a 10-month-old who fulfilled the Canadian
criteria 42 hours after near drowning but began breathing 15 hours later.
The drafters of the US pediatric Guidelines discounted this case because the
Canadian criteria did not require a second examination, although the au-
thors considered it “likely that if a second brain death examination had been
done within hours after the first, it would have confirmed brain death.” And
if “within hours” meant between 12 and 15 hours, the US Guidelines would
have been fulfilled (12 hours being the Guidelines’ minimum time interval
between the two examinations, and 15 hours being when the breathing
recurred). Their Table 2 listed 11 previously published cases of return of
brain function after a diagnosis of BD, three of which are mentioned below.
In the other cases, comprising four adults and four infants, the method of
apnea testing was either unclear or below current standards (Green and
Lauber, 1972; Bolton et al., 1976; Pasternak and Volpe, 1979; Allen et al.,
1980; Thompson et al., 1986; Ringel et al., 1988; Kato and al., 1991; Newberg
et al., 2002). Those cases should nevertheless serve as cautionary warnings,
since it is likely that at least some of those apnea tests were either valid but
merely not described in sufficient detail or would still have been diagnostic
if performed with today’s rigor.
Coimbra (2009) reported the case of a teenager who was run over by a
car and suffered a 15-minute cardiorespiratory arrest. Although some key de-
tails from the medical record were not available to him (since she presented
and was declared BD at a different hospital), what we do know about the
case makes it highly relevant. There is no way to determine whether the
US clinical Guidelines were followed to the letter; but that matters little, be-
cause the Guidelines allow for deficiencies in the clinical exam to be made
up for by inclusion of an ancillary test. In this case, a four-vessel angiogram
showed no blood flow to the entire brain. By the third day, the patient had
been diagnosed BD by two neurosurgeons independently on separate days,
and Coimbra himself confirmed absence of brainstem reflexes on the third
day. At the request of her parents, she was given full support, including
ventilation, nutrition and hormone supplementation. After around 1 month,
she began to manifest jaw closing and lip protrusion in response to oral hy-
giene with a bitter-tasting solution (brainstem functions). More importantly,
she began to trigger the ventilator, and by 7 months after BD declarationStatement re Revising the Uniform Determination of Death Act Page 15 of 35
she “was under respiratory training, capable of maintaining the triggering of
14–20 respiratory cycles per minute for an average period of 12 hours when
the ventilator trigger (sensitivity) was set at 1 L/min . . . but only for 30–60
minutes with the sensitivity set at 2 L/min.” (Coimbra, 2009, 317) This was
clearly not an instance of ventilator “autocycling” being mistaken for spon-
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taneous respiratory effort (Imanaka et al., 2000; Dodd-Sullivan et al., 2011;
McGee and Mailloux, 2011). This patient’s MRI scan at 3½ months failed to
show total liquefactive necrosis; rather, it showed gross preservation of struc-
tures with abnormal signal changes (sounding remarkably like McMath’s MRI
at 9½ months). Almost by definition, Coimbra’s patient was in GIP, and three
types of blood flow test (four-vessel angiography, transcranial Doppler, and
magnetic resonance angiography) all lacked the precision to reveal it.
Okamoto and Sugimoto (1995) reported a 3-month-old who fulfilled diag-
nostic criteria for at least 3 weeks, including two isoelectric EEGs and two
apnea tests 2 days apart (final paCO2s 69.3 and 62.1 mmHg). On day 43,
stable spontaneous respiration returned.
Haun et al. (1991) described a 3-month-old who fulfilled clinical criteria for
24 hours, including an apnea test with the second examination (final paCO2
67 mmHg) and an isoelectric EEG; he began to breathe regularly 8 minutes
after support was withdrawn. Although an apnea test was not included with
the first examination, it is highly likely that had one been done, it would also
have demonstrated apnea. In any case, according to the Guidelines’ algo-
rithm, the EEG compensated for the lack of the first apnea test.
Kohrman and Spivack (1990) described a 3-month-old who met clinical
criteria for 24 hours, had one apnea test (final paCO2 64 mmHg) and two iso-
electric EEGs. Four hours after the second EEG, she began making sucking
movements; then multiple other brainstem functions returned and continued
for 30 days. Although an apnea test was conducted only with the first exam-
ination, the Guidelines allow an EEG to compensate for the lack of a second
apnea test, and this patient even had two EEGs. It is likely that, had a second
apnea test been done, it would also have shown no respiratory effort, since
breathing was not among the brainstem functions that later returned.
Ashwal and colleagues in two papers 12 years apart reported the same
term newborn who fulfilled clinical criteria for one day (including apnea
with paCO2 >60 mmHg) but developed spontaneous respirations and motor
activity on the second day (Ashwal et al., 1977; Ashwal and Schneider, 1989).
In addition to these cases, it is worth mentioning the 2011 report by Webb
and Samuels (2011a) of an adult patient diagnosed BD, in whom brain func-
tion was noted in the operating room 24 hours after the death declaration, just
as organs were about to be taken. This patient had received neuroprotective
hypothermia, which both the authors and commentators noted to be a con-
founding factor that should have occasioned greater observation time and
perhaps ancillary testing (Webb and Samuels, 2011b; Wijdicks et al., 2011).
Therapeutic hypothermia has become standard treatment for many casesPage 16 of 35 D. Alan Shewmon
of serious brain injury (especially from hypoxia-ischemia), and neither the
adult nor the pediatric Guidelines offer any practical guidance regarding the
declaration of BD in this increasingly common clinical context. Dalle Ave
and Bernat (2020) recommend waiting 48 to 72 hours after rewarming be-
fore initiating tests for BD, and the World Brain Death Project recommends a
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minimum of 24 hours for pediatric and neonatal cases (Greer et al., 2020, #5
in their online Supplement 6), but there is no body of evidence to justify any
recommendation as providing a negligible probability of false-positive error.
The published cases cited above are likely the tip of an iceberg, given
that most physicians in clinical practice have neither the time nor the in-
clination to write up and try to publish anomalous cases (especially if the
misdiagnosis of death was professionally embarrassing or occasioned a law-
suit). There is no way to know how many of the false diagnoses of BD re-
ported in the news media over the years were made strictly according to the
Guidelines. Many surely were not, and it is convenient for defenders of the
Guidelines simply to dismiss them all as “undocumented.”
One such case stands out in particular, however: that of Zack Dunlap,
a 21-year-old Oklahoman who suffered severe head trauma in an ATV ac-
cident in November 2007, with brain matter issuing from one ear (Celizic,
2008; Morales, 2008). He was airlifted from a local hospital to a regional
trauma unit in Wichita Falls, TX, where he was diagnosed BD 36 hours
after the injury, reportedly confirmed by a radionuclide blood flow study.
He had indicated on his driver’s license the wish to be an organ donor, but
while preparations were being made for organ retrieval, he demonstrated
withdrawal to pain, so the surgery was immediately called off. Five days
later, he opened his eyes; then he began to breathe on his own and was
extubated. Finally, 48 days after the injury, he walked out of a rehab center
and returned home. His cognitive functions recovered as remarkably as his
motor functions, sufficiently to be interviewed on March 23, 2008 on NBC’s
“Dateline” program, where he recounted remembering hearing a doctor tell
family members that he was dead, feeling angry about it, and being unable
to communicate that he was conscious. Both Drs. Wijdicks and Shewmon,
and probably many others as well, tried to contact Zack’s family in the hope
of soliciting their authorization to examine his medical records, but to no
avail (personal communication, D. A. Shewmon). One would think that a
regional trauma center would have much experience diagnosing BD and
would likely do it according to the Guidelines; nevertheless, since the case
is “undocumented,” it has been ignored as a potential challenge to the claim
of no counterexamples to the Guidelines.
Be that as it may, there is a sufficient number of formally documented
cases to prove that the Guidelines do not enjoy the kind of infinitesimal risk
of false-positive error that a declaration of death ought to have (even setting
aside the half of cases with preserved hypothalamic function). In particular,
GIP, which is in principle reversible (at least partly), can mimic BD in everyStatement re Revising the Uniform Determination of Death Act Page 17 of 35
way, and neither the Guidelines nor any future revision of them based on
clinical examination and currently standard blood flow tests can guarantee
irreversibility of brain non-function with the ethically requisite degree of
reliability.
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Totality of Non-function
The UDDA requires the irreversible cessation of “all functions of the entire
brain.” Returning to Zack Dunlap’s case, whether or not the Guidelines were
fulfilled, his story illustrates the fallacy of equating unresponsiveness with
unconsciousness and the impossibility of determining unconsciousness with
certainty purely from a bedside clinical examination (La Puma et al., 1988;
Tosch, 1988; Dimancescu et al., 1989; Andrews et al., 1996; Karakatsanis,
2008; Schiff, 2010; Cruse et al., 2011; Goldfine et al., 2011; Aranake et al.,
2013; Parnia et al., 2014; Mashour and Avidan, 2015; Robbins, 2019; Edlow
et al., 2021). The original 1995 and the updated 2010 adult Guidelines re-
quire the establishment of coma, defined explicitly in terms of unrespon-
siveness (apart from spinal reflexes). The possibility that a patient might
be conscious even though unresponsive is not considered.6 The pediatric
Guidelines paraphrase “coma” as the “complete loss of consciousness, vocal-
ization and volitional activity” (their Table 3). Since the clinical examination
establishes unresponsiveness, but unresponsiveness does not necessarily
guarantee unconsciousness, the Guidelines cannot guarantee absence of all
brain functions, particularly the most important one. The RUDDA requires
“unresponsive coma with loss of capacity for consciousness . . .,”7 but by
specifying the Guidelines as the medical standard, the RUDDA undermines
itself. The conflating of unresponsiveness with unconsciousness is one of the
“elephants in the room” of BD noted by Verheijde et al. (2018).
It has long been known that many patients with coma, apnea, and brain-
stem areflexia manifest hypothalamic function in the form of regulation of
serum osmolality (about half of patients diagnosed BD, according to an ex-
tensive review by Nair-Collins et al. [2016]). Nevertheless, these patients have
been diagnosed for decades as “BD,” despite the glaring inconsistency with
the UDDA (no doubt motivated by the great need for transplantable organs
coupled with the perception of a hopeless prognosis). Additional kinds of
discrepancy between the neurological criterion (UDDA) and the tests for
death (the Guidelines) also exist (Shewmon, 2018a; Bernat and Dalle Ave,
2019; Dalle Ave and Bernat, 2020; Nair-Collins and Miller, 2020).
In an effort to maximize BD determinations, some experts have inter-
preted the UDDA’s term “all functions” to mean variously “all clinical func-
tions” (i.e., evident upon bedside examination) or “all critical functions” (i.e.,
contributing to the integrity of the organism as a whole). The Guidelines ex-
plicitly declare preservation of hypothalamic osmoregulation as compatible
with BD, despite the fact that it is both a clinical function (just wait longPage 18 of 35 D. Alan Shewmon
enough to observe the patient’s massive output of dilute urine) and a crit-
ical function (surely much more important for the organism as a whole than
a pupillary light reflex or any of the other cranial nerve reflexes that the
Guidelines require to be absent).
The RUDDA proposes to resolve the glaring inconsistency by implicitly
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declaring hypothalamic functions to be irrelevant to the diagnosis of BD:
“An individual who has 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, is dead.” (Lewis et al., 2020a) But the wording is
poor: there is no such thing as a “function of the entire brain,” and none of
the functions listed as having to be absent are in fact “functions of the entire
brain.” But if the phrase was intended to mean “function of any part of the
brain,” then hypothalamic function would surely count just as much as the
listed functions. In any case, the motivation for at least intending to exclude
hypothalamic function is purely pragmatic; it has nothing to do with why
BD should be legally equated with death (if it still is to be so equated). As
pointed out above, even apart from osmoregulation being a sign of life, it
is simply absurd to propose that periodic menstruation is compatible with
being dead. If the original President’s Commission’s rationale is to be taken
as precedent, surely hypothalamic function should be considered not only
a “brain function” (which it obviously is by definition), but even a “clinical”
and a “critical” brain function. This aspect of the proposed RUDDA would
codify into statutory law the conceptual gerrymandering that has been going
on all these years within the medical profession.
Finally, it should be pointed out that both the adult and the pediatric
Guidelines allow that an EEG be the (sole) ancillary test that substitutes for
a deficiency in the clinical examination (including the lack of an apnea test),
even though an EEG samples only the cortical surface adjacent to the skull
(leaving most of the brain, including all of the brainstem, unassessed), does
not guarantee irreversibility of non-function even of the cortical surface, and
is recognized even by proponents of BD to be unreliable as a confirmatory
test (Paolin et al., 1995; Young et al., 2006; Dalle Ave and Bernat, 2020).
Informed Consent
In reaction to recent court cases in which family members objected to the
diagnosis of BD, the RUDDA proposes to add a clause explicitly exempting
the neurologic determination of death from a requirement of informed con-
sent. Proponents typically frame the issue in the following way: consent has
never been required to determine whether a patient is dead or to declare a
patient dead by circulatory-respiratory criteria, and since death by neurologic
criteria (supposedly) identifies the same state of death, neither should con-
sent be required for the determination by neurologic criteria. Two issues areYou can also read
