Death concept

Death, Brain Death, and the Limits of Science: Why the Whole-Brain Concept of Death is a Flawed Public Policy Mike Collins, Ph.D. The Bioethics Program Mount Sinai School of Medicine, New York, NY Department of Philosophy Hunter College, New York, NY Division of Clinical Research Nathan Kline Institute for Psychiatric Research, Orangeburg, NY

0. Introduction The

U ifo

Dete

i atio of Death A t UDDA

1

states:

An individual that 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.

The

hole- ai

o ept of death , appealed to i the UDDA, has ee

ou dl

iti ized fo

many years. However, despite a great deal of legitimate criticism in academic circles no real clinical or legislative changes have come about. At least one reason for this inertia is aptly stated by James Bernat, o e of the p i ipal a d fou di g p opo e ts of the

ai death do t i e: I the eal o ld of pu li

policy on biological issues, we must frequently make compromises or approximations to achieve a epta le p a ti es a d la s 2. While acknowledging that the brain death doctrine is not flawless and that he and other proponents have been unable to address all valid criticisms, Bernat nonetheless maintains that the brain death doctrine is optimal public policy. The brain death doctrine provides

1

su essful pu li poli ph si ia s a u a

…

e ause it is i tuiti el a epta le a d

i death dete

ai tai s pu li

o fide e i

i atio a d i the i teg it of the o ga p o u e e t e te p ise 3.

I this pape I halle ge Be at s lai . The

ai death do t i e does ot

ake fo su essful

public policy. Policy that relies on the whole-brain concept of death as its foundation suffers from serious moral failings and so ought to be abandoned.

1. On the Diverse Concepts of Death

The concept of death is not a unitary one, and it is important to clarify and distinguish various se ses of the o d death . ‘hodes, fo e a ple, otes the follo i g:

While it may not always have bee so, toda the o d death has th ee disti t se ses. Death is a ough

a ke fo a o ple

iologi al e e t. Death is also a i po ta t

so ial/legal/politi al eal . A d death i di ates disti tio s i the

o al eal

a ke i the 4

.

This is a good start, but more precision is required. We begin with the commonsense concept. Death is the cessation of life, and it is realized by all kinds of things. The family pet, the insect in the backyard, and a human family member can all die or become dead. The commonsense notion of death is a non-te h i al o ept, a d dead a d its og ates a e o ds that e all use easo a l As a non-te h i al te

, the ollo uial death p o a l i ludes

o e tl .

ost o all of the follo i g o epts,

and may or may not distinguish among them, although some imprecise form of the biological concept lies at the core of the commonsense concept. The biological concept of death involves the cessation of biological functioning; it is a technical scientific concept. The standard elucidation of the biological concept of death is as follows. We begin

2

with a tripartite distinction between the conceptual definition of death , the physiological criteria that must be satisfied for biological death to have occurred, and the diagnostic tests that are used to dete the pe

i e hethe the ph siologi al ite ia ha e ee satisfied. Co eptuall , a e t essatio of the fu tio i g of the o ga is

iologi al death is

as a hole 5. This notion of biological death

involves the loss of the integrative unity of the functioning of the organism as a whole, where fu tio i g is take to

ea , at least pa tiall 6, the resistance of entropy and the maintenance of

internal homeostasis. When the various metabolic processes cease to work together in an integrated fashion in their resistance of entropy, the dying process has ceased and the event of death has occurred. The physiological criterion for this definition of biological death is the state known as brain death. This is the state in which all functions of the brain have ceased irreversibly. Bernat, Culver, and Ge t ha e

ade the e pi i al lai

that this ite io

of

ai death is pe fe tl

o elated ith the

permanent cessation of functioning of the organism as whole 7. The diagnostic tests used to determine whether brain death has occurred involve unresponsiveness, apnea, and lack of cranial nerve reflexes. Divergent from the biological concept is the personhood concept of death, which is the event in which the person ceases to exist. This notion of death is relative to that of a person. One insight into the nature of persons involves a focus on psychological states and their continuity. Persons are subjects that think or feel; they have experiences. Being a pe so , o this o st ual, is to e a self , the su je t that has relatively continuous psychological states. When that self, the experiencing subject, ceases to exist, the person has died. This notion does not make agency a necessary component of what it is to be a person. By contrast, many conceive of a person as a moral agent. Agency is usually understood in the Kantian sense in which an individual is self-governed (or autonomous), can act in accordance with her own directives, has and can give reasons for her behavior, and most importantly, is thus able to be held responsible for her actions. While all moral agents must be subjects of experience and thus persons in

3

the psychological sense, not all persons in the psychological sense are moral agents. For example, an individual that suffers from severe dementia can still be a person in the psychological sense: She is still the subject of experiences, centered on an experiencing self. She still feels pain, for example. By contrast, if she has lost the ability to have and give reasons, to act in accordance with her own directives, and thus, cannot be held responsible, then she is no longer a moral agent, and therefore the (moral agency construal of the) person has ceased to exist. For a different example, an infant or very small child is not yet a person in the agency sense, but is a person in the psychological sense. To

ai tai

la it of o d use, I ill he efo th use pe so to efe solel to the

psychological, non-moral concept of personhood. We distinguish this from the moral agency concept by usi g

o al age t o age t to efe to the latte . This is ot a e do se e t of eithe o ept of a

person; we simply need clear and unambiguous language. Related to the moral agent concept of death, there is the moral patient concept of death. While a moral agent is one who is autonomous and morally responsible for her behavior, a moral patient need not be an agent, but nonetheless is a member of the moral community and thus deserving of moral consideration and protection8. Thus, all agents are patients, but not all patients are agents. The moral patient concept of death refers to the event in which an individual loses her standing as a member of the moral community, and hence is no longer granted the typical moral protections afforded to such members. For example, a biologically living human is afforded certain protections, such as the prohibition of autopsies, burial, or cremation while still biologically living, as a result of her membership in the moral community. But upon biological death, these protections no longer apply; cremation, burial, and autopsy become morally acceptable. Thus, the severely demented individual is no longer a moral agent, hence, the death of the agent has already occurred, but she is still a moral patient, deserving of moral consideration.

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Finally, there is the legal concept of death. This is the concept that gets explicitly legislatively defined in order to serve socio-legal purposes. Currently, there is widespread, international consensus on what that legal definition should be, and it is defined in terms of whole-brain death or brainstem death, essentially following the lead of the UDDA quoted at the outset of this paper. The central argument of this article concerns this concept. Bernat claims that the whole-brain concept of death remains optimum public policy, and I challenge that claim. The real disagreement, for the purpose of this paper, is over how we ought to legall defi e the o d death .

2. Scientific Realism and Biological Death

It may not always be apparent, but much of the brain death debate relies on the answer to a far o e ge e al uestio : Ho a e ou

o ds o o epts elated to the o ld? Do e

o st u t ealit

with our concepts, in such a way that the world is somehow dependent on our minds, thoughts, or concepts? Or should we say that the world is what it is, independent of what humans happen to say or thi k a out it? Is the o ld out the e to e dis o e ed, o is ealit just a ps hoso ial o st u t ?

The theoretical commitments that go with various answers to these fundamental metaphysical questions inform the brain death debate in an important way. If you are of the scientific realist persuasion, then biological death is a natural phenomenon, just like carbon molecules and electromagnetic fields, and its nature is to be discovered, not stipulated. If, on the other hand, you are of the non-realist persuasion, then we do not properly discover what biological death is, but we (somehow) decide it, construct it, or otherwise have creative powers with regard to its nature, with regard to what it is.

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The u de l i g

etaph si al uestio is fu da e tal a d e o passi g, a d I su el

a t do it

justice in this concise section. Instead, I will briefly mention some reasons why (i) we ought to accept realism, and (ii) as a matter of practice, everyone does accept it, regardless of their explicit theoretical commitments.

There are many different ways of thinking about realism, but for our purposes the basic idea is si ple, a d it is o

o se se: The o ld is hat it is, i depe de t of a o e s thoughts a out it.

When scientists investigate the world, they do not construct it or agree that it should be so, thus making it so. Rather, scientists discover the world, and our scientific theories are either true or false depending on whether or not they correspond to reality as it is.

The standard argument for scientific realism is known as the no-miracle argument: Our best scientific theories are remarkably successful in making predictions and allowing for the manipulation of manifest phenomena. Our engineers and physicians use the theories that scientists give them to manipulate reality in very reliable ways, to build bridges and airplanes, to treat diseases, etc. The only explanation for this remarkable success, short of making it a miracle, is that those theories at least approximate the (literal) truth. That is, our best theories say something about the world, and the world really is as they say, at least for the most part. For this reason, we ought to conclude that scientific realism is true9.

In addition to the positive argument for scientific realism, we should also note that, every time we get onto an airplane, or into an automobile, we trust our lives to the truth of various scientific theo ies. If e did t at least i pli itl ae od a i s a d so fo th i ol ed

elie e that a ious theo ies a out f i tio , the o e tha

od a i s,

e e ps hoso ial o st u tio s , e ould ot so

readily put our lives in the hands of the engineers who designed these machines, based on scientific theories. Thus, we all implicitly accept scientific realism, which can be seen through our actions. Finally,

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we should keep in mind that realism, in its various forms, is just plain commonsense, and the various forms of non-realism are so far removed from commonsense that it becomes difficult to even charitably interpret what they say. How could e

o st u t the o ld ith ou

i ds?

I hope that the above discussion seems trivial, and that it is obvious that there is a world outside of our minds whose nature is independent of our concepts10. Ho e e , o e e e a epted the asi , commonsense notion of realism, some important implications follow. First, life is a natural, biological phenomenon, and thus so is biological death. It follows from this that we cannot decide on the nature of biological death, thereby making it whatever we agree that it is; it is something whose nature is to be discovered, ot stipulated. It also follo s f o

this that it is possi le to sa so ethi g that is t t ue

about biological death: A group of physicians, or group of legislators, or indeed an entire community, can all be wrong about what biological death is, just as they can be wrong about, say, whether combustion involves releasing phlogiston or consuming oxygen.

The second implication is that biological death is not the sort of thing that occurs by fiat. When a physician declares a patient dead, the patient does not thereby become biologically dead. Being married, by contrast, is a state that gets instantiated when and only when a person that plays the appropriate social role, such as a judge or other officiant, decrees it. Being biologically alive is not that kind of state. I cannot be made to be alive because a legislator or physician decrees it if I am dead; similarly, I cannot be made dead because a legislator or physician has decreed it.

There are a couple of important points in need of clarification. On the one hand, the world is what it is regardless of what anyone says or thinks about it, and that world includes biological organisms and biological states, whose natures are to be discovered. On the other hand, while the world is independent of us, the meanings of our terms are not. For example, a physician cannot cure cancer by de la i g,

fiat, that he patie t o lo ge has it. Ho e e , hat does a e

7

efe to? “hould e

say that a patient has cancer when she has a few pre-cancerous cells? How many? What kind? The fact is, biological concepts are messy. The boundaries of the extensions of those concepts are vague, usually i dete

i ate, a d i a i po ta t se se, the a e a it a . “o pe haps

appa e tl

o ious

lai

that the world is what it is and we do not construct it, is misguided. In at least one important sense, it might be argued that we do construct biological reality, because there is an element of choice involved i

hethe

a e

ea s this or that11.

This objection confuses the social conventions involved in determining the meaning and extensions of our terms, with the world to which those terms refer. The meanings of our public language terms are dependent on us (to some extent at least), so if, as a community of linguistic agents, we all agree to use certain words in a new way, we can certainly change the meanings of those terms. But changing the meanings of terms does not change the world to which those terms refer. For e a ple, if e all ag ee that “a ta Claus efe s to the ja of pea ut utte i hat “a ta Claus

ould

ea . Ho e e , that ould ot

a i et, the that is

ake Santa Claus, that is, the jolly old man

ith a hite ea d a d ed suit, e ist. All it ould do is ha ge hat “a ta Claus efers to. But the original question about the existence of a man who lives at the North Pole was never a question about the meaning of an arbitrary group of phonemes, nor was it a question about a jar of peanut butter. It was a question about a jolly old man at the North Pole.

By comparison, once we accept scientific realism, we accept that at least one component of the question confronting us is about the nature of biological death. It is not a question about the word death . We a

ake a

g oup of sounds mean whatever we want, and we can even go so far as to

legislate it. But what we cannot do is alter the underlying reality; we cannot alter biological death itself, legislati g o

hat the o d death

ea s. All that e a do is ha ge o

larify the meaning of a

word, and that is distinct from discovering the nature of what that word refers to.

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A second, related worry, deals with the possibility of vague cases12. Merely accepting scientific realism and recognizing the important distinction between our thoughts or language and the world that our concepts and terms refer to, does not imply that, for every individual thing, there is an unambiguous a d s ie tifi all ases, it

o e t a s e of hethe that thi g is eall ali e o dead. If the e a e such vague

ight follo that

ai dead i di iduals fall i to the

ague ess

atego , i

hi h ase the

purpose for which we use the concept of death might become relevant, thereby interlinking the underlying biological reality with social purposes, and blurring the strict line that I seek to draw between the world as it is and the language and concepts that we use to describe it.

The possibility of vague intermediate cases, as mentioned above, is compatible with the basic scientific realism thesis and with the important distinction between the mind-independent world and our language. The only sense in which the possibility of vagueness would be threatening is if it turns out that brain dead individuals in fact fall into the vagueness category, inhabiting a place somewhere between being alive and dead. But establishing that thesis takes separate argumentation, which is not provided by the mere possibility of vagueness. Additionally, I will shortly demonstrate that the biological status of brain dead individuals is not at all vague.

To be clear then, all I seek to establish at this point is that biological death is a matter to be discovered, not stipulated. Second, whatever biological death is, it does not occur in virtue of a person who plays the appropriate social role declaring it to be so, the way marriage does. Third, physicians and others can be right or wrong about whether an individual is biologically dead, but this does not imply that for every possible case at every possible moment of time, there is a right or wrong answer. The mere possibility of vagueness does not threaten any of these basic points.

Here is a related way of making the same underlying point, which also serves to illustrate the prevalence of the unfortunate conflation of the meanings of terms with the world to which those terms

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refer. A definition is an explanation of the meaning of something. The sorts of things that get defined, however, are terms in a language. For example, e a defi e hai , ut e a

ot define a chair. We

can describe a chair, we can sit on it or break it (etc.), but chairs, as such, do not have definitions because they are not the sorts of things that have meaning. “i ila l , e a defi e death (the word), but not death (the event or phenomenon). Death, the biological event, can be explained, described, prevented, or caused, but it cannot be defined because it is not the sort of thing that has a meaning in the way that words do. Thus the phrases the definition of death a d defi i g death a e senseless. This may seem like academic pedantry, but it is relevant and important. B

o fusi g death ,

the word to be defined, with death, the phenomenon to be explained, we bring properties of definitions to bear in our attempts to explain the mind-independent phenomenon. Namely, definitions are dependent on use by a community of linguistic agents, and open to revision and stipulation. Biological phenomena themselves are not dependent on use by a linguistic community nor are they open to revision or stipulation. Instead, they bear discovery, description, and explanation. This confusion is widespread, but he e a e t o i po ta t e a ples. Be at et al. title thei se i al pape , O the defi itio a d ite io of death

, and the Preside t s Co

13

issio fo the Study of Ethical Problems in

Medicine and Biomedical and Biobehavioral Research title their work Defining Death14. Both of these titles evince the same underlying confusion between metaphysics and semantics: death, the phenomenon, is to be discovered and explained, not defined or stipulated. It is o l the o d death that bears definition. But, with respect to biological death, it is not primarily a (mind-dependent) definition that we are after; it is a description and explanation of the mind-independent biological phenomenon.

A further clarification: Just as there is a distinction between the social conventionality of the meanings of our terms and the world to which those terms refer, there is also a distinction between the

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events or properties in the world, and our epistemic access to those events and properties. Biological death is the event that separates the living (or dying) process from the process of increasing entropy. However, even assuming that this is the best theory of biological death and thus that we ought to accept it, this does t i pl that ph si ia s ill ha e episte i a ess to when death occurred. Instead, what physicians can do is determine (after the fact) that the event has indeed occurred.

Whether physicians can ever, even in principle, discover when the process of entropy reversal occurs, is irrelevant to the nature of biological death. Biological death is what it is, and nothing about its nature is implied by our epistemic access to it. Just as we do not construct the reality of death by deciding on its nature, we also do not construct the reality of death as a result of what we can know about it. Physicians are quite good at determining that biological death has occurred, and this is enough for our purposes.

3. Brain Death is Not Biological Death

The claim that brain death is not biological death has been ably defended in many places. Here I only outline the basic and strongest argument15. As Bernat, Culver, and Gert argued in their 1981 article, we should consider the conceptual definition of death to be the permanent cessation of the functioning of the organism as a whole. The notion of biological functioning of the organism as a whole has been clarified (by Korein and others17) in terms of thermodynamics: Living biological organisms are localized pockets of entropy-resistance. In their homeostatic maintenance of various physiological factors, living biological organisms resist thermal and chemical equilibrium with their environment. When this process ceases irreversibly, the organism has died and the entropic process takes over.

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The claim that the permanent cessation of all functions of the brain (i.e. brain death) is the physiological criterion for biological death is a simple and elegant one, and, fortunately, it is also an empirically testable claim. Bernat, Culver, and Gert make the following claim, which I quote again for its i po ta e: this ite io

of

ai death is pe fe tl

functioning of the o ga is

as hole

o elated ith the pe

a e t essatio of

18

. Let us call this H (for the brain death hypothesis). Using our

tried-and-true scientific methodology, if H is true, we should expect to observe the following (which I will call O for observable implication): Whenever an individual suffers permanent loss of all brain function, that individual should suffer permanent cessation of functioning of the organism as a whole (alternatively, the localized pocket of anti-entropy should cease to exist, and the entropic process should take over). As it turns out, we do not always observe the permanent cessation of functioning of the organism as a whole upon loss of all brain function; or, the localized pocket of anti-entropy does not cease to exist when the brain ceases to function. Specifically, in brain dead individuals, the following homeostasis-maintaining functions have been observed: cellular respiration, nutrition, wound healing, febrile response to infection, and the elimination, detoxification, and recycling of waste19. Each of these homeostatic functions serve to resist entropy for the organism as a whole, and, although they are typically modulated by the brain in a healthy individual, nonetheless they can and do occur in the absence of any brain function. Bernat has replied that

a

of “he

o s

h o i all

ai dead patie ts (from whom I

draw the examples above) were not in fact brain dead; they were simply misdiagnosed20. If this were the ase, the “he a

of “he

o s

o s o se atio s ould ot ou t as dis o fi h o i all

i g H. However, we do not need

ai dead patie ts to see that O is false. Brain dead patients can

maintain spontaneous circulation, gas exchange at the alveoli, and cellular respiration. These processes serve to stave off entropy; they are homeostasis-maintaining functions of the organism as a whole.

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Thus, not only do we fail to observe that O; rather, we observe that not-O. It follows that H is false. The empirical hypothesis H, the brain death hypothesis, claims that the permanent cessation of the functioning of the organism as a whole is perfectly correlated with the permanent cessation of all brain function, and this is false. Therefore brain death is not biological death21. I will briefly pause to address an objection, which is that gas exchange, circulation, etc., are made possible by the ventilator, and without it, these processes would not occur. This is both true and irrelevant. Circulation, gas exchange, and cellular respiration are also made possible by a permanently implanted pacemaker in a person who needs it, and without the pacemaker, these processes would not o u . But it does t follo f o

this that a pe so

alki g a ou d ith a pa e ake is al ead dead

e ause ithout the pa e ake he hea t ould t i ulate o genated blood. Similarly, when an i di idual ith la k of all

ai fu tio

ai tai i g fu tio s that he

elies o a e tilato , it does t follo that the ho eostasis-

od still pe fo

s atu all a d spo ta eousl a e t eall

iologi al

functions. Thus, the brain death hypothesis is false. Lack of all brain function does not perfectly correlate with the cessation of functioning of the organism as a whole, and brain death is not biological death. It is worth pointing out that Bernat has implicitly accepted this. In subsequent writings he subtly but importantly shifted the dialectic. The initial discussion was about brain death, which is the permanent cessation of all functions of the brain. The UDDA, and the various state laws based on it, also pertain to brain death, as they define death in terms of the permanent cessation of all functions of the

ai . Ho e e , i Be at s late

death, by redefining the te

iti gs, he a a do s the lai

ai death to

that

ai death is e essa

fo

ea something like partial brain dysfunction.

Early on in the brain death literature it was discovered that individuals can meet the diagnostic requirements for brain death in terms of apnea, unresponsiveness, and lack of cranial nerve reflexes, yet nonetheless maintain certain neurological functions. The most obvious of these involves

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neurohormonal regulation of free water homeostasis and with it, the prevention of central diabetes insipidus. Rather than acknowledge that the tests produce false positives and recommend a test for neurohormonal function, Be at s e diale ti simply attempts to change the medical standards so that both the definition of death and the criterion of biological death would be in line with the imperfect diagnostic tests, tests which call people brain dead even though they clearly maintain some neurological function (and hence, are not brain dead). Specifically, Bernat has argued that the new definition of death is the pe the critical functions of the organis Be at, a e fu tio s that a e o ga is

as a hole

e essa

fo the

e phasis 22. Critical functions, according to ai te a e of life, health, a d u it of the

23

. The new criterion for this redefinition is not brain death. Rather, the criterion for the new

defi itio is the i e e si le essatio of all clinical fu tio s of the e ti e odifie

a e t essatio of

li i al

efe s to i po ta t fu tio s of the o ga is

measurable on bedside neurological e a i atio Befo e I add ess Be at s lai s, e

ai

e phasis 24. The

that a e eadil o se a le o

25

.

ust fi st la if the diale ti . The i itial lai

as that

brain death, that is, the cessation of all functions of the brain, is a physiological criterion, or is a necessary and sufficient condition, for biological death. This claim underlies the UDDA and the state laws based on it. This claim has been decisively refuted: An organism with complete lack of brain function, if maintained on a ventilator, can nonetheless maintain certain homeostasis-maintaining iologi al fu tio s, a d so e ai

iologi all ali e. Be at s e

lai

shifts the diale ti f o

the

lack of all brain function to the lack of clinically apparent brain function, and this is not relevant to the original brain death hypothesis. Additionally, since the complete lack of brain function is not a sufficient condition for the death of the organism, neither is the partial lack of brain function. Neither brain death o Be at s pa tial

ai d sfu tio a e suffi ie t fo the iological death of an organism. The dialectic

has been shifted, but the move is fallacious.

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More importantly, by shifting the dialectic in this way, Bernat has already accepted that brain death does not perfectly correlate with the permanent cessation of the functioning of the organism as a whole. For Bernat, something weaker is now required: He now claims that brain death is sufficient but not necessary for biological death, whereas the whole-brain concept of death makes brain death both sufficient and necessary for biological death. Add essi g Be at s e diale ti , it is eas to see that the otio of a

iti al fu tio

is

vacuous, and it does not rule out neurohormonal function except by ad hoc decree. It does no good to defi e death i te

s of the essatio of iti al fu tio s a d the to defi e

iti al fu tio s i

terms of the functions necessary for life. That may be true but it is trivial; to claim that neurohormonal functions are not critical functions is simply to claim that neurohormonal functions are not necessary for life, which is to beg the question. It is also worth comparing the following two quotes. The first is from Bernat (1998), the second is from Bernat et al. (1981).

While I agree that the secretion of antidiuretic hormone counts as a function of the organism as a whole, it is not a critical function because patients without such secretion can survive for long periods without treatment [my emphasis]26.

The patie ts des i ed

B ie le a d asso iates … a e also i this atego

iologi all li i g . These patie ts … etai ed

a

of ei g

of the vital functions of the organism as a

whole, including neuroendocrine control and the control of circulation and breathing [my emphases]27.

Certainly, we may all change our minds over the course of a career, and there is nothing wrong with that. However it is worth noting that this change only came about as a result of new findings that

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demonstrated that the standard diagnostic tests are flawed because they routinely produce false positives. After this flaw was brought to light, rather than change the tests in order to make them more reliable (specifically, by incorporating a requirement that neurohormonal functions be ruled out), the new claim is that neurohormonal control is not a Additio all , e e if

iti al fu tio

espi atio , gas e ha ge, et ., a e fu tio s

a

ital o

iti al fu tio , a d that is ad ho .

e o -trivially defined, surely circulation, cellular

e essa

fo the life, health, a d u it of the o ga is

.

Thus, even if we adopt the new definition of death (and we should not, because it is essentially undefined), it still does not follow that brain death is biological death. It is not. Second, changing the physiological criterion from brain death to partial brain dysfunction, where the relevant functions are now clinically observable functions, is both ad hoc and entirely irrelevant to the nature of death. Biological death is a natural phenomenon to be discovered by science. As such, the epistemic access of neurologists is irrelevant. What possible difference could it make to the underlying biological reality whether a neurologist needs a penlight or needs a blood test to look for i ulati g ho

o es? Additio all , the ad ho

li i al fu tio s test does t e e

ule out

neurohormonal functions. The absence of central diabetes insipidus is clinically apparent through the absence of polyuria anyway28. It has been conclusively demonstrated that brain death is not biological death. From this it follo s that Be at s pa tial

ai d sfu tio is ot iologi al death eithe . Be at s shifti g diale ti is

fallacious with respect to the original question about biological death and its relation to brain death. E e should e a ept the shift,

iti al fu tio s a e a u defi ed ad ho

o st u tio ; the use of

clinical functions as their physiological criteria is similarly an ad hoc maneuver, and does not even do what it was intended, after the fact, to do: Clinically observable functions do not rule out neurohormonal functions because the lack of central diabetes insipidus is clinically apparent through the lack of polyuria, and this demonstrates the preservation of neurohormonal function.

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Although it is clear that brain death is not biological death, nothing follows with respect to personhood, agency, or the status of a brain dead individual as a moral patient. Those are distinct questions. Let us now turn to them.

4. Brain Death and Death Brain death is not biological death, but as Rhodes notes29, the o d death is also used to

ak

distinctions in the moral and socio-legal realms. The legal definition is just what is at issue, so we will momentarily leave that aside. However we may still ask: Does brain death correspond to any of the distinctions in the moral/psychological realm earlier discussed? Brain death is sufficient but not necessary for the death of the person, in the psychological se se of pe so . The pe so dies

ette : the pe so ceases to exist) when the self, the subject of

experiences, no longer exists. This occurs when all psychological states cease. While psychological states have ceased to exist in the brain dead individual, this event can also occur prior to brain death, for example (presumably at least) in an individual in a vegetative state he efo th V“ . Additio all , a anencephalic infant is not brain dead, but (again, presumably at least), lacks all psychological states, and thus is not a person. Brain death does not mark the distinction between personhood and nonpersonhood. Similarly, brain death is sufficient but not necessary for the death of the moral agent. This occurs when the individual loses her autonomy, is no longer able to have and give reasons, has no preferences or values, and cannot be held responsible for her actions. People with severe dementia, and individuals in a VS, a e al ead dead, i the

o al age

se se of death , ut the a e ot

ai

dead. At a different stage, infants and very young children lack autonomy in this sense, and so they are

17

not yet agents. Nonetheless they are not brain dead. Brain death does not mark the distinction between agency and lack of agency. All that is left is the moral patient concept of death, and this is a crucial point: Whether brain death marks the distinction between membership and lack of membership in the moral community is a normative value judgment, subject to rational disagreement. The claim that brain death is the death of the moral patient is equivalent to the claim that brain dead individuals are not entitled to the moral protections typically afforded those who are members of the moral community, such as the prohibition against autopsy, cremation, and most relevantly, the prohibition against the removal of vital organs30. However, that question, whether brain dead individuals should be afforded the same or similar moral protections as non-brain-dead individuals, is not a scientific question. The answer to it depends on how much value gets assigned to biologically functioning individuals in the brain dead state. If little to none, then brain dead individuals are not members of the moral community, and it is morally acceptable to remove their vital organs (thus ending the biological life of the individual). Hence, on this valueassignment, brain death is the death of the moral patient. If, however, some level of biological functioning confers moral value on an individual, then on this distinct value-assignment, brain death is not the death of the moral patient. Whether brain death corresponds to the death of the moral patient depends on the normative question of how much (or what kind of) value to assign a biologically functioning individual with complete lack of brain function. Science cannot answer that question.

5. The Legal Concept of Death

I now defend the central claim of this paper. Namely, the brain death criterion for death is not su essful pu li poli ; alte ati el , the u e t legal defi itio of death , defi ed i te death, engenders serious moral failings and therefore ought to be changed.

18

s of

ai

To u de sta d hat is at issue, e ll eed a ke concept: The legal definition of death is a stipulative definition. Hence, it is true by definition, regardless of what that stipulation is; or, it is impossible for the legal definition to be false. For example, if the laws were changed so that the legal concept of death is defined as the cessation of all functions of the kidneys, then a person would, by definition, be legally dead upon renal failure. There is no sense to be had in asking whether the legal defi itio of death is t ue o

ot; it is true by definition. Rather, the appropriate question is: How

should e legall defi e death ? This is a o

ati e uestio a out the est a to legall stipulate the

conditions under which we will, for socio-legal purposes, call an individual legally dead31. The legal definition should track one or more of the various death-concepts thus far discussed. I fo esee o easo a le a gu e t fo legall defi i g death i so e a that t a ks eithe the biological concept, nor the personhood concept, nor the moral agent or patient concept. As I e tio ed a o e, e

ight defi e death i te

s of the loss of all kid e fu tio

fo e a ple , ut

why would we? In what follows, I present several arguments against the brain death criterion as the legal standard for death. Ultimately, the brain death criterion for legal death engenders unsuccessful policy because it is disingenuous, and because it results in serious moral flaws in medical practice. I present these arguments as distinct, but many of them draw on overlapping points and concerns.

5.1 The Ad Verecundiam An ad verecundiam is a fallacy that appeals to an inappropriate authority. For example, John Madden is an expert on American foot all, ut ot o , sa , ph si s. Appeali g to Joh Madde s ie s about foot all is a app op iate appeal to a ele a t autho it . But appeali g to Joh Madde s ie s about physics involves the appeal to an inappropriate authority.

19

The scientific/medical community, as a whole, is an authority on biology and medicine. That is, the medical community is authoritative on factual biological questions, and an appeal to the medical community to resolve factual questions about biology is an appropriate appeal to a relevant authority. However, among the various concepts of death, only one of them is in the factual, scientific domain, and that is the biological concept. We have seen that brain death is not biological death; whether brain death marks distinctions among the other death-concepts, however, is not in the purview of science. A key event in the evolution of public policy that ultimately resulted in our current policy was the pu li atio of A defi itio of i e e si le o a i the Journal of the American Medical Association32, in 1968. This was authored by a panel of experts from Harvard, who studied patients in irreversible coma. The subsequent book Defining Death33,

the P eside t s Co

issio fo the “tud

of Ethical Problems in Medicine and Biomedical and Behavioral Research, adopted the 1968 definition, and this was incorporated into the UDDA and all subsequent state laws based on the UDDA. However, as we have seen above, the empirical brain death hypothesis is false. Brain death is not biological death; but that really never was the question at issue. The questions have always been these: When is it acceptable to remove life-sustaining machinery in order to free up ICU beds, and when is it acceptable to remove organs? Since solid organs are not viable after biological death, the answer to this latter question, if we are to obtain organs for transplant (and respect the dead donor rule), had better be sometime before biological death. As noted previously, these are not scientific or medical questions. They are value-laden, normative questions. However, by putting forth the claim that brain death is death, backed by such prestigious scientific institutions as Harvard Medical School and the Journal of the American Medical Association, the full weight and force of the scientific medical community backs the claim. The claim that brain death is death is put forward by medical scientists as if it were a scientific fact that has been

20

discovered, rather than what it is: It is a normative judgment that has been decided. But medical s ie tists a e ot o

ati e e pe ts , a d this is a ald ad verecundiam.

5.2 An Obscured Public Debate The lai

that

ai death is death is a

iguous a o g the se e al se ses of the o d death .

More carefully, there are several distinct words, all of which are homonyms, and all of them are spelled, death . Like a k which refers to the fi a ial i stitutio

a d a k which refers to the side of a

i e , death , death , death et . a e all diffe e t o ds. Whe

o te t does ot

ake lea the

disti tio s, I ill use death- , death-p , death- a , death- p , death-l , a d death- to de ote, respectively, biological death, death of the person, death of the moral agent, death of the moral patient, legal death, and the commonsense notion of death. The claim that brain death is death-b is a technical scientific claim for medical scientists to grapple with. None of the other claims are. The most important remaining claim is whether brain death is death-mp, because each of the relevant questions, regarding when it is appropriate to remove vital organs, or when it is acceptable to remove life-sustaining machinery and free up ICU beds, turn on whether brain death marks the distinction between membership and non-membership in a moral community. Like euthanasia, abortion, and the permissibility of stem cell research, this is a question of grave moral significance, and it is the sort of question about which the entire community should get the chance to deliberate upon. However, that public debate is obscured and prevented. As a result of the ad verecundiam and the various homonyms, the underlying normative questions are masked. Rather than having the value judgment – that a brain dead individual has lost her standing in the moral community even though she remains biologically alive – be made explicit as such, instead we only hear the claim that brain death is death. Without having access to the literature upon which this claim is based, and without engaging in a

21

careful study of that literature, it is impossible to recognize that claim for the value judgment that it is. The commonsense concept of death, whatever else it involves, clearly has biological function at its core. Thus, read from the commonsense view, the claim that brain death is death-c cannot possibly be interpreted as not involving biological death; and this makes the claim entirely misleading and therefore disingenuous. Everyone agrees that autopsies and cremation are acceptable on a dead body. If the medical o

u it has dis o e ed that

ai dead i di iduals a e dead, the

h

ould t o ga

e o al

also be acceptable? Without making the value judgment that underlies the brain death doctrine explicit, the general public is in no position to participate in deliberation about a fundamentally moral issue, because that issue is not presented as a moral issue. Rather, it is presented as a factual claim that medical scientists have discovered, and about which the general public has no standing to determine. Consider, for example, the following quote from the New Yo k “tate Depa t e t of Health s Guidelines on Determining Brain Death34:

Hospitals must establish written procedures for the reasonable accommodation of the i di idual s eligious o

o al o je tio s to use of the

… “i e o je tio s to the

ai death sta da d to dete

i e death

ai death sta da d ased solel upo ps hologi al de ial that

death has occurred or on an alleged inadequacy of the brain death determination are not based upo the i di idual s

o al o eligious eliefs, easo a le a o

odatio

is ot e ui ed i

such circumstances. However, hospital staff should demonstrate sensitivity to these concerns and consider using similar resources to help family members accept the determination and fact of death [my emphasis].

22

This policy is based on a misunderstanding, but that is to be expected for the reasons laid out a o e. The lai

that

ai death is death is put fo

a d as if it e e a fa t that has ee dis o e ed.

But, among all of the various concepts of death and their associated homonyms, only one of them is factual, and that is the biological concept. It has been decisively shown, time and again, that brain death is not biological death; hence, contrary to the Department of Health, the brain death standard is inadequate as a determination of biological death, and the fact is that the brain dead individual is not biologically dead. But somehow this claim is impervious to evidence: the fact that the tests are unreliable in that they produce false positives by missing neurohormonal function, has not resulted in a change in the diagnostic tests but in a change in the criteria so that the criteria fit the flawed tests. The fact that homeostasis-maintaining, entropy-resisting functions of the organism as a whole can remain in the brain dead, has not resulted in the abandonment of the brain death hypothesis, as it would for any empirical scientific claim that has been refuted by evidence. Rather, that fact has simply been ignored, and for good reason: The claim that brain death is death is not a scientific claim about the facts. It is a judgment about values, and this is why it is impervious to evidence. I should make clear that I do not disagree with the underlying value judgment, that organ removal from the brain dead is morally acceptable under certain conditions. But without having done a careful study of the medical and bioethics literature upon which these claims are based, the rest of the general public is not privy to that discussion nor can the public play any role in the decision whether to allo this

ith o se t o

ot. Without la if i g that the lai ,

ai death is death eall

ea s,

ai death is death- p , it is to e e pe ted that e e o e, i ludi g the Ne Yo k “tate Depa t e t of Health, is going to interpret a claim made by the medical community as a factual, medical claim, even though it is t. Thus, a relatively small group of physicians and bioethicists have made a normative judgment about a fundamental moral issue involving life, death, and the value of biologically living human beings

23

at the end of life. But they have presented that value judgment as a medical fact that no one outside the medical community has the expertise or authority to challenge. This is disingenuous, and it has prevented the possibility of any meaningful public debate about that fundamental moral issue. Mai tai i g the legal defi itio of death i te

s of

ai death o l se es to pe petuate this se ious

moral problem.

5.3 The Lack of Informed Consent Respect for autonomy, or for the right of self-determination, is deeply grounded in both our common law traditions as well as our medical ethics. One of the ways that this principle appears is through the requirement of informed consent for medical procedures. An informed consent is given when the consenter has adequate understanding of the relevant facts, and voluntarily, without coercion, consents to some procedure. When an individual lacks autonomy and has not given prior directives, her autonomy can still be respected, in a sense, by respecting the decisions of her surrogate decision-maker. In this case, the surrogate decision-maker acts as a proxy or stand-in for the patient. Just as if the patie t he self e e

aki g a de isio , the su ogate s o se t

ust e i fo

ed: It must

be made in the presence of adequate understanding of the relevant facts, and in the absence of coercion. Consents for organ donation are practically never informed consents. There are two ways that consents are typically given for organ removal from the brain dead. The first, more frequent way, is through a conversation between family members and physician, after the patient has already been declared brain dead. The second occurs when people fill out consent forms at their state Department of Moto Vehi les, o th ough o li e o se t fo

s ith thei state s O ga P o u e e t O ga izatio

OPO . I ill add ess the post-brain death conversation with family members first.

24

The implementation of informed consent is achieved through a conversation between patient or surrogate decision-maker and physician, where the physician explains the relevant facts to the decisionmaker. For this conversation to result in the successful communication of information, both the physician (the speaker) and the decision-maker (the hearer) must play their respective communicative roles appropriately. For the physician, that means that she must understand her own subject matter clearly, before she can communicate that to the hearer. Unfortunately, many physicians do not understand the conceptual difficulties, inadequacies, and fallacious reasoning surrounding the brain death doctrine. I make this claim on the following four grounds. First, the literature upon which the brain death doctrine is based is riddled with non sequiturs. Discussions of critical vs. non-critical functions are irrelevant, consciousness is a red herring, as the difference between life and death is not the presence or absence of consciousness, there is confusion between diagnosis and prognosis, the creation of various homonyms distorts the issue and obscures the underlying value judgments, and there is confusion between the normative questions about organ donation with the factual questions about biological life and death35. We can hardly expect that great clarity will arise from such a confused primary literature, and it is no surprise to find a lack of understanding about death, brain death, and the relations between them. Second, Shewmon, Halevy, and Youngner all agree with my assessment. “he

o

ites, the

conceptual basis for equating a dead brain with a dead human individual remains as confused and o t o e sial toda as e e

. Hale

36

o u s:

a

health p ofessio als, including those actively

involved in organ transplantation, are confused about the current definition, criteria, and tests for dete

i i g

ai death

37

(my emphasis). Youngner et al. provide an empirical study that supports the

claim of inadequate understanding by health professionals38. Of course, this is a dated study at this point (it is from 1989). However, the confusion in the literature remains, as does the widespread

25

acceptance of the conceptually confused brain death doctrine, therefore it is reasonable to conclude that the confusion among health professionals themselves remains as well. Thi d, the uote f o

the Ne Yo k “tate Depa t e t of Health a out the fa t that

ai

death is death provides further evidence for the claim that there is widespread confusion among the medical community. Fourth and finally, the mere fact that the brain death doctrine is so widely accepted, when it is so clearly confused, is evidence enough that there is widespread confusion, even among physicians, about brain death, death, and the conceptual relations between the two. Therefore the physician, the speaker, is going to have a difficult time communicating with the family39. The communicative difficulties for the hearer, the decision-maker, are far worse than for the physician. As a result of our acceptance of the dead donor rule, and as a result of the legal definition of death i te

s of

ai death, the ph si ia , as Mille a d T uog ote40, must insist that brain death

e uals death. Thus the ph si ia

ust i fo

the fa il

e

e that he lo ed o e is dead . But

what does that mean, since there are at least six different homonyms, all of which are spelled, and sou d like, dead ? P esu a l the fa il

e

e

ill i te p et dead i the ollo uial se se of the

word. Whatever other connotations might be invol ed i the o

o se se o d dead , so e e sio

of the biological concept, of cessation of functioning, clearly lies at the core of the commonsense concept. Therefore when the physician tells the decision- ake ,

ou fa il

e

e has died , that

statement is t t ue. On the biological concept, and hence on at least part of the commonsense concept, the brain dead patient is still biologically alive. Therefore the decision-maker does not have adequate understanding of the relevant facts; namely, the decision-maker is misinformed about whether the brain dead patient is biologically alive or not. In the real world, physicians have difficult conversations with family members, and do their very est to e plai to the fa il

e

e so ethi g that is t t ue, and something about which the

physician herself is possibly unclear. The family member, for her part, does her best to understand what

26

the ph si ia t ies to e plai , ut that u de sta di g is ea to i possi le, si e the ph si ia s o d dead e dead

ight

ea a

of a u

e is dead is false. If it

e of thi gs. If it

ea s dead- , the the lai

ea s dead-p o dead- a the the lai

ea s dead- p the the ph si ia has u

itti gl take the

that the fa il

is t ue ut

isleadi g. If

oral decision out of the hands of

the person who should be making that decision, and anyway the claim is again misleading because no atte ho

ou a al ze it, the ollo uial o d dead i ol es a i p e ise, o -technical version of

dead- . All of these various confusions result in the near impossibility of obtaining or giving informed o se t fo o ga do atio , a d all of these o fusio s a ise e ause the legal o d dead is defi ed i terms of the brain death standard. On the other hand, patients can give consent for organ removal through an advance directive, eithe th ough the Moto Vehi le Depa t e t o o the egio s OPO e site. Fo the a ious easo s discussed above, including the ad verecundiam and all the reasons that public debate is obscured, the general public is in no position to make a truly informed choice about what they would like to happen to their bodies before they have biologically died but after brain function has ceased. The situation is even worse in this scenario than in the conversation scenario discussed above. In the conversation scenario, the doctor at least attempts to inform the family about the relevant facts surrounding the decision (even though that attempt is practically doomed to fail). In the case of internet consent forms, virtually no attempt at providing relevant information is made. Woien et al. studied the websites of every OPO in the U.S., and scored each site based on, among other things, donation promotion and informed consent41. To score informed consent, they used the minimal information recommended by the United States Department of Health and Human Services recommendations for informed consent42, as percentages of the recommended data elements. For example, recommended data elements for informed consent include criteria for brain death and cardiac death, organ donor end-of-life care, medical tests necessary for organ procurement, and disclosure of

27

confidential medical records to OPOs. They found that not even a single website (out of the 60 in total, for each OPO region of the U.S.) provided any information at all on any of these recommended data elements. Not a single state disclosed information about aspects of end-of-life care incompatible with organ donation, options available for hospice care and organ donation, or changes to medical care at the end of life with organ donation. On the other hand, the scores for donation promotion and donor consent reinforcement were very high. The websites include altruistic reasons to donate, religious views condoning donation, tips for pe suasio of do o s fa il to o se t, lai s that the do o s fa il s g ief is alle iated

do atio ,

and that the family is not responsible for organ procurement expenses. Woien et al write,

Our findings showed that the disclosure on OPO Web sites and in online consent forms lacked pe ti e t i fo

atio

e ui ed fo i fo

ed e oll e t fo de eased o ga do atio … The

Web sites predominantly provide positive reinforcement and promotional information rather than the transparent disclosure of the organ donation process43.

In other words, the online consent forms and OPO websites serve as mere advertisements designed to convince people to donate organs. They do not serve as reliable sources of information about the relevant facts surrounding the organ donation process. Advance directives made through o li e o se t fo o ga s upo

s, OPO e sites, a d Moto Vehi le Depa t e ts

ou death ,

ost e tai l do ot o stitute i fo

he k this o to do ate ou

ed o sents.

Therefore, whether it is through the sort of advance directives discussed above, or through a discussion between family members and physician after brain death has occurred, consent for organ donation is almost never informed. This is inconsistent with the purpose of living wills and surrogate decision- ake s: The aiso d êt e of these thi gs is to p ese e the a ilit of auto o ous age ts to

28

determine the course of their lives, even after their autonomy has been lost. But in the absence of crucially relevant information, autonomous agents cannot direct the course of their care at the end of life. This situatio

ill o ti ue so lo g as pu li poli

e ai s as it is, ith death legall defi ed i

terms of the brain death standard.

5.4 The Rejection of Pluralism Reasonable, morally serious people of good will can reasonably differ in some of their fundamental value judgments. This is not an endorsement of relativism, but a simple recognition of the fundamental nature of certain value judgments. For example, someone sympathetic to the Kantian tradition will claim that intrinsic moral value is had only by rational agents, because only things that do value things, and have the ability to pursue what they value based on reasons, have moral value. By contrast, those sympathetic to the utilitarian tradition will claim that the simple ability to suffer confers intrinsic moral value, irrespective of the ability to think or to have reasons. Others will claim that being a biologically functioning human confers intrinsic moral value, and others yet will take a religious view, which is probably extensionally (but not intensionally) equivalent to one of the above. For the very reason of their fundamental nature, we do and should accept a pluralism of valueassignments. This is, emphatically, not to say that we should accept a pluralism of biological concepts of death. Biological death is what it is, and our concepts either correspond to it as it is, or they do not. On the other hand, reasonable people can reasonably make differing value judgments. In fact, we already do, to some extent at least, accept this: Recall the reasonable accommodation requirement from the New York State Department of Health. While mistaken about the difference between the facts and values surrounding this issue, o etheless, the Ne Yo k “tate Depa t e t of Health s easo a le a o

odatio

e ui e e t fo

religious or moral objections to the brain death standard is appropriate, and it is justified and explained

29

by the following consideration. Since the brain death standard does not reflect a factual judgment about biological death, but does reflect a normative value judgment about which reasonable people can reasonably disagree, it is sensible to make room for reasonable differences in value judgments. Ho e e ,

defi i g the legal te

death i te

s of the

ai death sta da d, e ha e

implicitly rejected the value-pluralism that underlies the reasonable accommodation requirement. To see why, recall that brain death is neither biological death, nor personhood death, nor death of the o al age t. ‘athe , the legal defi itio of death i te

s of the

ai death sta da d is si pl the

value judgment that biologically functioning human beings with complete lack of brain function are not members of the moral community. This value judgment, however, is only one among several reasonable value-assignments. But by codifying that value judgment into law, we have rejected all other value-assignments. Legislators, basing their decision on the inappropriate authority of their medical advisors, have forced their own fundamental value judgment onto everyone else, without ever giving the public the opportunity to pa ti ipate i deli e atio . The u e t legal defi itio of death the efo e rejects the possibility that there might be distinct yet reasonable fundamental conceptions of the determinants of human moral worth.

5.5 Unnecessarily Obscure Language While the e a e i deed se e al diffe e t o epts of death, usi g the o d death to describe ea h of the

se es o good pu pose. Usi g death i these a ious a s, as ho o

s, elides

distinctions that need separation and confuses issues that need clarification. It is further unjustified because we already have clear, relatively colloquial language to say everything that needs saying, without using confusing homonyms to do so.

30

I stead of usi g death to

a k a ious disti tio s i the so ial, politi al, a d

o al eal s, e

can say the following. The person and the moral agent have ceased to exist. The individual is no longer a member of the moral community. The o l disti tio that e eed the o d death to

a k is the

distinction in the biological realm, between anti-e t op a d e t op . The ollo uial o d dead , whatever else it involves, has this concept of the cessation of biological functioning at its core, and therefore, partially at least, tracks the same distinction. By using clearer, more careful language, much of the confusions noted above can be avoided or clarified. For example, the ad verecundiam becomes obvious: The medical community tells us about iologi al fa ts, i ludi g iologi al death, ut s ie tists ua s ie tists a e ot o

ati e e pe ts .

Thus, the value judgment that brain dead but living individuals are not members of the moral community is made obvious. Similarly, the debate about this crucial moral issue can be made public and open to forthright discussion, just as the other moral issues surrounding life and death are. Informed consent will become possible as well, because we will no longer disingenuously claim that brain dead individuals are already dead. Instead, we can say that they are biologically alive, but that the person that they once were, the moral agent, the locus of rationality, consciousness, and personality traits, no lo ge e ists. Depe di g o o e s fu da e tal alue judg e ts, a i fo

ed de isio

a

e

ade

about whether to donate organs, even though doing so will result in the (biological) death of the brain dead but living individual44.

5.6 Organ Donation Kills the Donor Brain dead organ donors are biologically alive before the organ recovery process and dead afterwards; organ removal from a brain dead donor kills the donor. I have argued elsewhere that, if this were consented to based on an adequate understanding of the relevant facts, it would be morally

31

acceptable45. However, removing organs, and thereby killing the donor in the process, in the absence of consent, is an egregious moral violation. Many if not most organ donors might nonetheless consent to donation if they ever became brain dead even if they knew the relevant facts (that is, that a brain dead individual is biologically alive but all traces of the person and the agent are gone). However, this presumption does not exonerate our u e t s ste

fo

its failu e to allo people to

ake that hoi e fo the sel es. “o lo g as death is

legally defined in terms of brain death, because of all of the numerous sources of confusion discussed above, it is nearly impossible for people to give a legitimately informed consent to their being killed by organ removal. And that is morally intolerable. All of the above arguments, while distinct, share the same overlapping concerns. Legally defi i g death i te

s of the

ain death standard unacceptably obscures a moral judgment about the

value of biologically living human beings that not all reasonable people would accept. This is disingenuous, and it results in the failure to respect the right of autonomous agents to decide what happens to their bodies before they have died. This failure is so egregious that it even results in biologically living individuals being killed without their consent, either via an informed advance directive or an informed surrogate decision. As I said above, this situation is morally intolerable, and it must be changed.

6. Policy Recommendation

For all of the reasons discussed above, public policy based on the brain death standard is far from optimal; rather, it suffers from serious moral flaws that demand rectification. In this brief section I propose a policy shift that aims for correction of these flaws.

32

“i e the legal defi itio of death is stipulati e, the app op iate uestio to ask is: Ho should e legall defi e death ? Gi e the a guments above, it is clear that at least one way that we should not defi e death is i te

s of

ai death. ‘athe , the legal defi itio of death should t a k the

biological concept. The biological concept of death involves the cessation of functioning of the organism as a whole in its unified maintenance of internal homeostasis and resistance of entropy. The permanent cessation of all functions of the brain does not correlate with this. However, the permanent cessation of all circulatory and respiratory functions does. Therefore, the criteria for the biological, and hence the legal concept, ought to be reverted to the older cardio-respiratory criteria. When the legal definition tracks the biological concept, the unnecessary confusions that engender all of the moral flaws discussed above will be removed. Clearer language, as discussed in 5.5, a

e used to sa e e thi g that eeds sa i g. Fu the , e should ot a ept a

a thi g-goes

conception of death, and having the legal concept track the biological concept allows for this, since the biological concept is governed by biological reality, not by normative value judgments or cultural norms. Additio all , legall defi i g death i te

s of the iologi al o ept does ot o s u e o

ati e alue

judgments, nor does it rule out any of the value judgments that we currently make implicitly. After public acknowledgement of the biological fact that brain dead individuals are biologically alive, forthright public debate can ensue on the underlying moral issue that has always been at the heart of the brain death debate: When is it morally acceptable to remove vital organs, and when is it acceptable to remove brain dead individuals from the ventilator, thus allowing them to die? I advocate, along with the proponents of the brain death criteria, that brain dead organ removal (with consent) is morally acceptable. However, to legally allow this, homicide laws would need to be revised in order to allow exceptions for the case of transplant surgeons, since brain dead organ donors are in fact killed by the process of organ removal46.

33

Although it is clear that the current public policy on death and brain death is seriously unacceptable, there is an important objection to my call for drastic change. Given the political climate of many countries, it is altogether likely that many people will be dismayed to find out that brain dead organ donors are killed for the purpose of organ removal. Once this fact is publicly acknowledged and the legal defi itio of death is ha ged as I ad o ate, it is e

likel that the fu the

ha ges I p opose,

allowing revisions to homicide laws so that brain dead organ removal would be legal, would not take place. If this occurred, the entire transplantation enterprise might suffer a near-collapse, as a very large majority of organs are removed from brain dead donors, but this would no longer be allowed in the scenario envisioned here. The organ shortage that we suffer from today would be greatly exacerbated. With fewer organs available, many more people will die from organ failure. As a direct result of the policy changes I recommend (assuming, that is, that further revisions to homicide laws do not also take place), thousands of people will die. This is not a consequence to be ignored or taken lightly, and I do neither of these things. However, it is also crucial to understand this argument: It is an argument from utility that advocates the intentional deception of the public by the medical community. The argument from utility under consideration goes like this. Suppose the medical community publicly admits its error, and acknowledges that brain death is not biological death, thus resulting in the edefi itio of the legal te

death i te

s of the iologi al o ept, hose criterion is cardio-

respiratory, not neurological. Then, it is very likely that the killing of brain dead donors for the purpose of organ recovery will not also become legal. Then fewer organs will be available, and more people will die as a result. It is better to continue making a disingenuous claim than to allow so many to die. Therefore we should maintain public policy as it is. This is a compelling argument at first glance, and it is the only argument for maintaining the status quo that is not grounded in one or another fallacy. Unfortunately, it is also unacceptable. Biological reality is what it is, whether we like it or not. This is the main point made in section 2. The

34

fact is that brain death is not biological death, and nothing that anyone says or agrees to is going to change the underlying biological reality to which our words refer. What the argument advocates, however, is for the medical community to intentionally deceive the public about the biological reality of death. Mistakenly lai i g so ethi g that is t t ue is o e thi g, a d it is

o all e usa le;

intentionally deceiving the whole community is entirely different. Trust is at the foundation of medicine. Nothing is more important to the existence of the medical field itself than trust, by the patient, of the physician and medical community. We trust our doctors with private and sometimes embarrassing information, with various states of undress and forms of touch that we would not allow anyone else, and we ingest potentially hazardous chemicals at the behest of our physicians, because we trust them. We allow our physicians to render us unconscious and cut into our bodies, and we go so far as to allow, and even expect, our physicians to occasionally override our decisions if they judge our decision-making to be unreasonably clouded by pain, emotional distress, or metabolic disturbances. None of this is possible without the single foundation of medicine: t ust. As ‘hodes fu da e tal

ites, f o

ho

I o o the a gu e t a o e, seek trust and deserve it … is the

o al i pe ati e fo do to s

47

.

The fundamental moral imperative, to seek trust and deserve it, is clearly violated by intentional, widespread public deception on the part of the medical community. While the argument from utility mentioned above seems compelling at first, we must recognize that it advocates doing something that is antithetical to the very existence of the institution of medicine, and therefore we cannot accept it. Rather than using utility as an argument for deception, utility can and should be used as an argument for allowing transplant surgeons to remove vital organs from brain dead but living donors.

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7. Beyond the Limits of Science

The debate over brain death and death was never a scientific debate, and recognition of this is crucial for removing and correcting the serious moral flaws that this misconception has engendered. This de ate is

e o d the li its of s ie e i at least th ee a s.

First, right from the start, nothing even resembling the scientific method of inquiry was used to determine the relation of brain death to death. I can say this no better than it has already been said; I quote here from Byrne and Weaver (all emphases in the original)48:

B ai death

as ot p opagated ia a medical scientific method. A committee of

experts was convened to deal with issues that could affect disposition and/or utilization of these patie ts. The fi st o ds of the ‘epo t of the Ad Ho Co

ittee of the Ha a d Medi al “ hool

to Examine the Defi itio of B ai Death … a e as follo s: Ou p i a i e e si le o a as a e

pu pose is to defi e

ite io fo death. …

The primary purpose of the Committee was not to determine IF irreversible coma was an appropriate criterion for death but to see to it that IT WAS esta lished as a death. With a age da like that at the outset, the data ould e

e

ite io fo

ade to fit the al ead a i ed

at conclusion. It seems that there was a serious lack of scientific method in this process.

Second, after the brain death hypothesis was established, no amount of evidence could refute it. The brain death hypothesis has been impervious to evidence in at least two ways. As discussed above, the diagnostic tests used to determine if all functions of the brain have ceased routinely produced false positives, claiming that individuals were brain dead when they were not. Rather than revise the testing procedure, the medical standards were simply changed so that the criteria for death

36

would fit the imperfect tests. O e it as dis o e ed that the tests do t e eal eu oho fu tio , eu oho

o al fu tio s e a e i sig ifi a t o

ot

o al

iti al .

It is abundantly obvious that cellular respiration, alveolar gas exchange, and circulation are functions of the organism of the whole that maintain internal homeostasis and resist entropy. Although the prognosis of a brain dead individual is quite poor, nonetheless, while maintained on a ventilator these functions do continue. This provides incontrovertible evidence that refutes the brain death hypothesis. Any empirical scientific hypothesis that has been so decisively and obviously refuted would have been discarded long ago. But somehow the brain death hypothesis survives, so much so that it is considered medical fa t . The does t

ai death h pothesis is so o pletel i pe ious to e ide e that it

atte what we find – even brain dead mothers gestating fetuses and brain dead children

growing and sexually maturing49. Somehow, the brain death standard tenaciously holds on, in the face of clearly refuting evidence. It is therefore beyond the limits of science. Third and finally, what lie at the heart of this debate are moral questions. They are questions about the moral value of biologically living human individuals that have lost all brain function. But these questions, like questions about euthanasia and the just distribution of resources in the face of scarcity, are moral questions, not scientific questions. Only when we recognize the brain death standard for the non-scientific, non-factual moral judgment that it is, will we be able to address and rectify the serious moral failings engendered by our current public policy, a policy which is far from optimal.

Acknowledgments: I presented an early version of this paper at the 2009 Oxford-Mount Sinai Consortium on Bioethics, in New York City. I am grateful to the participants for a great deal of thoughtful conversation. I am also grateful to an anonymous reviewer of this Journal for insightful and helpful commentary.

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1. See President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Biobehavioral Research, Defining death: Medical, legal, and ethical issues in the determination of death (Washington, D.C.: U.S. Government Printing Office, 1981), at 119. . Be at, J.L., The hole- ai o ept of death e ai s opti u pu li poli , Journal of Law, Medicine, and Ethics, (2006): 35-43, at 41. 3. Bernat, supra note 2, at 41. . ‘hodes, ‘., Death a d d i g, Encyclopedia of Life Sciences, (2001): 1-7, at 1. . Be at, J.L., C. Cul e , a d B. Ge t, O the defi itio a d ite io of death, Annals of Internal Medicine, 94 (1981): 389-394, at 390. 6. Be at et al., sup a ote , do ot e plai the o ept of fu tio i g of the o ga is as a hole i terms of entropy-resistance, but in terms of the integration of the functions of smaller subsystems (see sup a ote , page . Ho e e , the do e tio , ith app o al, Ko ei s ea l atte pts to defi e the brain as the critical system controlling the organism as a whole in terms of thermodynamics and the resistance of entropy (at 391, citing Korein, J., The p o le of ai death: de elop e t a d histo , Annals of the New York Academy of Sciences, 315 (1978): 19-38). Therefore Bernat et al. hold the following theses in their 1981: (i) the brain is the critical system controlling the organism as a whole, (ii) without a functioning brain the organism does not function as a whole, and (iii) the brain is critical in virtue of its integrative role in resisting entropy. From (i)-(iii), we can conclude that the idea that fu tio i g of the o ga is as a hole should at least partially be understood in terms of homeostasis and entropy, is implicit in Bernat et al 1981. Additionally, Bernat late ade this idea e pli it: C iti al fu tio s of the o ga is as a hole comprise three disti t … atego ies … [of which one is:] integrating functions that assure homeostasis of the o ga is … The iti al fu tio s i all th ee atego ies ust e permanently lost for the organism to e dead. Be at, J.L., A defe se of the hole-brain concept of death, Hastings Center Report 28 (1998): 14-23, at 17. 7. Bernat et al., supra note 5, at 391. 8. All sentient creatures are moral patients; the ability to feel pain puts one in the moral community, deserving of moral consideration (this is a controversial claim of course, but it is also mostly irrelevant to any point made in the text so I make no attempt to defend it here). However for the purposes of this paper we are only interested in the subset of human o al patie ts. I ill he efo th use o al patie t to efe solel to hu a o al patie ts, ut I should e u de stood as ot uli g out a i als as deserving of moral consideration. 9. The canonical no- i a le a gu e t is f o Put a , H., What is athe ati al t uth? i H. Put a , ed., Mathematics, matter, and method: Philosophical papers (Cambridge: Cambridge University Press, 1975). For a defense of scientific realism see Psillos, S., Scientific realism: How science tracks truth, (London and New York: Routledge, 1999). For different versions of non-realism see Van Fraassen, B.C., The scientific image (Oxford: Clarendon Press, 1980) and Goodman, N., Ways of worldmaking (Indianapolis: Hackett Publishing Company, 1978). 10. I do not mean to trivialize this important debate in metaphysics. It is a deep and important issue, and many serious philosophers have devoted a great deal of careful, rigorous thought to it. Nonetheless, the overwhelming rational support seems to be on the side of realism, and that should not be ignored. 11. I thank Dr. Lynne Richardson for pressing me on this point during a presentation at the 2009 OxfordMount Sinai Consortium on Bioethics. 12. I am grateful to an anonymous reviewer for helping me to clarify this section on scientific realism through several interrelated objections; among them is the concern about vagueness. 13. Supra note 5. 14. Supra note 6.

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15. Fo a o e tho ough defe se see Colli s, M., ‘ee aluati g the dead do o ule, Journal of Medicine and Philosophy (2010); doi: 10.1093/jmp/jhq009, from which I draw the following discussion. 16. Bernat et al., supra note 5, at 391. 17. “ee Ko ei , J., a d C. Ma hado, B ai death - Updating a valid concept for 2004, i C. Ma hado a d D.A. Shewmon, eds., Brain death and disorders of consciousness (Springer, 2004). See also Korein, J., B ai death: I te elated edi al a d so ial issues, Annals of the New York Academy of Science, 315 (1978): 1-454. 18. See supra note 5, at 391. 19. “he o , D.A., The ai a d so ati i teg atio : I sights i to the sta da d iologi al atio ale fo e uati g " ai death" ith death, Journal of Medicine and Philosophy 26 (2001): 457-478. 20. Be at, J.L., O i e e si ilit as a p e e uisite fo ai death dete i atio , i C. Ma hado a d D. A. Shewmon, eds., Brain death and disorders of consciousness (Springer, 2004). 21. I his , Be at ote that i teg ati g fu tio s that assu e ho eostasis of the o ga is a e critical fu tio s of the o ga is as a hole … Fu the , the p ese e of these fu tio s o stitutes sufficient evidence for life Be at, J.L., A defe se of the hole-brain concept of death, Hastings Center Report 28 (1998): 14-23, at 17.). Therefore even Bernat should accept that the presence of homeostasis-maintaining functions such as circulation, cellular respiration, and alveolar gas exchange clearly demonstrate that brain dead individuals are not necessarily dead. Additionally, the worry about vague cases discussed in section 2 can be further alleviated: The brain dead individual with spontaneous circulation, gas exchange etc., resists entropy and maintains homeostasis and is therefore not a vague case; she is clearly in the category of being biologically alive. 22. See supra note 21, at 17. 23. See supra note 21, at 17. 24. See supra note 21, at 17. 25. See supra note 21, at 17. 26. See supra note 21, at 17. 27. See supra note 5, at 390. 28. This should not be taken to imply that I endorse the ad hoc li i al fu tio ite io , as I do ot. As Mille , F.G., a d ‘.D. T uog ite i A apolog fo “o ati ioethi s, American Journal of Bioethics 8 (2008):3- , o p. , Most ph si ia s ha e ee taught to ega d the e ui ale e of ai death a d death as a edi al fa t o a pa ith the K e s le . I o l poi t out that li i al fu tio s do ot rule out neurohormonal functions to show the persistently fallacious reasoning that is routinely appealed to, and that forms the basis for what is a epted as the edi al fa t that ai death is death. 29. See supra note 4, at 1. 30. An anonymous reviewer pointed out that some people who are not dead might nonetheless be willing to forgo the protections afforded the living, such as the prohibition against the removal of vital organs. This is correct, and it is consistent with my thesis here, which is simply that whether a brain dead individual is a moral patient is a normative value judgment. Affording living individuals certain moral protections does not imply that those individuals may not voluntarily revoke those protections. 31. In an earlier paper (supra note 15 , I stated that the UDDA had gotte it o g , e ause death is not brain death, and thus the claim made by the UDDA is false. What I should have said is that the legal definition got it wrong because it does not, but should, correspond to biological death. Defending this latter claim is in essence the central goal of this paper. 32. Bee he , H.K., et al., A defi itio of i e e sible coma. Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, JAMA 205 (1968): 337-340. 33. See supra note 1.

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34. Department of Health, New York State, Guidelines for determining brain death (2005), at , pp. 2-3 (last visited December 12, 2009). 35. See Colli s, M., Co se t fo o ga et ie al a ot e p esu ed, HEC Forum 21 (2009): 71-106, where I provide a more detailed defense of the claim that consents for organ removal are not informed, and upon which this discussion is based. I provide textual evidence for each of the listed sources of confusion there. 36. See supra note 19, at 457-458. 37. Hale , A., Be o d ai death?, Journal of Medicine and Philosophy 26 (2001): 493-501, at 496. 38. You g e , “.J., “. La defield, C.J. Coulto , B.W. Juk ialis, a d M. Lea , B ai death a d o ga retrieval: A cross-sectional su e of k o ledge a d o epts a o g health p ofessio als, JAMA 261 (1989): 2205-2210. 39. Robert Truog, a pediatric critical care physician who does have these conversations with family members, is not confused about the conceptual difficulties involved in the brain death doctrine. But even for someone like Dr. Truog the communication difficulties remain, as Miller and he note: [The] dead donor rule also poses problems of professional integrity for clinicians who (rightly in our opinion) do not believe that ai dead patie ts a e eall dead. U de the o e tio al wisdom, they must insist on the fiction that brain death equals death in their efforts to encourage patients and family members to donate organs (see supra note 28, at 6). Thus, even for the many physicians who do not uncritically accept that brain death is death, communication difficulties remain. 40. See supra note 39. 41. Woie , “., M.Y. ‘ad , J.L. Ve heijde, a d J. M G ego , O ga p o u e e t o ga izatio s i te et enrollment for orga do atio : A a do i g i fo ed o se t, BMC Medical Ethics 7 (2006): 14. 42. Centers for Medicare and Medicaid Services - Depa t e t of Health a d Hu a “e i es, Medi a e and Medicaid programs; conditions for coverage for organ procurement organizations (OPOs); final ule, CF‘ Pa ts , , a d . Federal Register 71 (2006): 30981-31054. 43. See supra note 41, at 14. 44. The dead donor rule states that individuals must be dead prior to organ removal and that organ removal cannot be the proximal cause of death; this rule currently has widespread acceptance. In the o te t of the dead do o ule, the i fo ed de isio to do ate o e s o ga s p io to iologi al death is not allowed. Thus we must either abandon the dead donor rule or discontinue the removal of vital organs from brain dead but living individuals. I have argued elsewhere that the dead donor rule should be abandoned; see supra note 15. 45. See supra note 15. 46. As my reviewer pointed out, in addition to changes in the laws, there would also have to be changes in all of the policies surrounding donation, the attitudes among surgeons, anesthesiologists, nurses, administrators, lawyers, and members of the public. This is true; I do not claim that I propose a simple change. However, the serious moral flaws that our current policy engenders demand it. 47. ‘hodes, ‘., Justi e i t a spla t o ga allo atio , i ‘. ‘hodes, M. P. Batti a d A. “il e s, eds., Medicine and social justice (Oxford: Oxford University Press, 2002), at 347. “ee also ‘hodes, ‘., The p ofessio al espo si ilities of edi i e, i ‘. ‘hodes, L. P. F a is a d A. “il e s, eds., The Blackwell guide to medical ethics (Blackwell Publishing, 2007), for more on this. 48. B e, P.A., a d W.F. Wea e , B ai death is ot death, i C. Ma hado a d D.A. “he o , eds., Brain death and disorders of consciousness (Springer, 2004), at 43. 49. See supra note 19.

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