INTRODUCTION

Two parts of the brain are important in understanding the issues involved with brain death and disorders of consciousness: the brain-stem and the cortex. The brainstem controls most of what happens subconsciously in the body serving as the bridge for the information coming from the body to the brain, and is essential for perception of the external and internal world. Some functions of the brainstem are respiration, cardio-vascular activity, sleep and unconscious awareness. Damage here can cause paralysis, anesthesia, coma or death.

The cortex can be divided into several major lobes, and lesions in specific areas will produce specific deficits. One area is the temporal lobe, which contains Wernicke's area, essential for understanding spoken and written language. This part of the cortex is also important for recognition of visual information ( as opposed to the occipital lobe, which perceives visual information). Results of damage to this area are short-term memory loss, hallucinations, seizures, or the inability to recognize words or objects. Another cortical area is the parietal lobe. Damage here typically will cause attentional disorders which can cause the person to neglect or ignore one total side of his/her body and/or environment as if it didn't exist.

The prefrontal cortex is an area within the frontal lobe. It constitutes 29% of cortical area in humans, 17% in chimpanzees and 3.5% in cats. Seizures or other disorders of this area can cause intrusive "thoughts" as well as hallucinations, similar to those found in schizophrenia. Additionally, damage here can cause bizarre behaviors, including total losses of "social graces," concern for others, severe apathy, flattened affect and total lack of concern for their illness or their odd behaviors (for example, eating off of the floor, ignoring all cleanliness, etc.). Finally, there often is a loss of insight and foresight, leading to severe deficits in problem solving and the ability to make informed decisions.

DISORDERS OF CONSCIOUSNESS

In 1975, Robert Veatch proposed that permanent loss of the neocortex be a criterion for death, since it is almost unanimously held among neuroscientists that the neocortex is the part of the human brain which is essential to being human (Bernat, p. 119). This definition of brain death would become important when considering persistent vegetative state (PVS) and anencephalic patients, whose brain damage is mainly in the cerebrum (the cortex plus some other areas such as the thalamus and basal ganglia). Anencephalic babies are born with essentially no cortex at all. Death as defined by cerebral loss would mean that these two types of patients would be considered legally dead as soon as a definite diagnosis of PVS or anencephaly was made, so could therefore be immediately removed from life-support, and organs harvested upon approval of relevant parties (relatives, etc., who knew the wishes of the patient).

Those who believe neocortical death is appropriate for defining death usually assume three propositions (Downie, p. 222):

1. Death is the loss of that which is essentially significant to the nature of the entity.
2. Consciousness is the essentially significant characteristic of a human being.
3. The death of a human being is indicated by the irreversible loss of consciousness.

Intuitively this may sound like a reasonable cause for rejecting Veatch's proposal for death. However, I support his view of death on both philosophical and practical grounds. Philosophically, the above three-step argument adequately deals with the objection that the rest of the biological world is considered alive, even though they don't think. The first part of the argument assumes that there are abstract qualities that differ from species to species that are essential to that species' definition. For example, part of being an animal in the wild is having the capacity to catch one's own food. For a wild cat this requires great speed and sharp claws. If these qualities are lost, that cat is as good as dead. An animal rights activist might very well support euthanizing this animal rather than letting it slowly starve to death, or rather than taking it into captivity, into a foreign and un-natural environment. Similarly, there are qualities that are essential in the definition of being human: 1) cognition, 2) emotion, 3) will and 4) social interaction being integral to this definition, all of which are lost in PVS patients.

Another objection to considering PVS patients dead is that this might lead us down a slippery slope of degrading the value of human life. Some feel that if we place our eggs in the cerebrum basket, that we may eventually regress down the Nazi road to euthanization of the mentally retarded, demented or severely handicapped. This need not be so, however. If we consider each of the four above aspects (cognition, emotion, will and social interaction) as essentially for consciousness, then we only lose one, possibly two of those aspects with any other disorder other than PVS or anencephaly.

Even in patients with severe-locked-in syndrome (in which the patient has extreme motor loss, such that no motor functions remain except vertical eye movements and slight eye-blinks), the patient usually retains normal thought processes. Many of these patients have even learned to communicate using either basic coding systems, like yes-no responses using eye movements, or more advanced coding systems like Morse code. While that person's quality of life is severely diminished, they still retain at least three and often all four of the essentially significant qualities of their human-ness, and therefore would not qualify for a legal diagnosis of death. Moreover, even if eye-movements are also restricted in a locked-in syndrome, PET studies reveal significant differences in brain glucose metabolism in locked-in patients versus PVS patients (Levy, p. 679), therefore they still would not mistakenly receive a brain-death diagnosis.

The only valid argument for disallowing the inclusion of PVS patients into the brain dead category is the level of precision in developing prognoses. While few patients who enter a PVS recover with full functioning, many do recover. One study shows that only 59 out of 1373 patients who entered PVS recovered, and none of those who recovered who was over 40 years old became independent in the first year of follow-up (Braakman, p. 50). A second study shows that of 434 patients in the first three months of PVS, 33% died, 15% remained in a PVS, 28% recovered but with severe disability, and 24% recovered with moderate to good functioning (Multi-Society Task Force, p. 1572). After six months of being in a PVS however, there is only a .5% chance of recovering with good functioning. Of those who enter a PVS, the cost for the first three months is about $150,000, and after that the average annual cost is about $155,000 per patient.

Thus, a significant portion of patients who enter a PVS recover with some functioning, presenting a major difficulty in calling all PVS patients dead. This may change in the next few years, however, as studies are completed which compare brain imaging between those patients that eventually recovered with those who didn't recover. At that time it may be possible to judge with a fair degree of certainty which patients should actually be declared dead, or after what length of time the patients should be declared dead.

The case is very different for anencephalic babies, who are born without a significant portion of their cerebrum. There are between 1,000-3,000 anencephalic births each year, of whom only half are born alive, over one third die in the first day, and the rest die in the first week (Wildes, p. 21). The status of anencephalic infants is much less controversial than those of PVS patients, if for no other reason than that they die quickly of natural causes (usually from respiratory or cardiovascular distress), rather than "hanging on" for years.

The question still remains, however, of whether to consider anencephalic babies dead at birth, or wait until natural death overtakes them. By Veatch's definition there is no question. These babies have no capacity to ever develop consciousness and are imminently close to death, therefore all medical treatment other than basic supportive care (hygiene, nutrition/hydration, comfort, etc.) is futile. So unlike PVS patients, there is no hope for recovery for anencephalic babies. Currently the AMA has decided that organ transplantation from live anencephalic babies is inappropriate, thus declaring them alive by proxy.

One might conclude that it is best to wait to remove the infant's organs since it will die shortly anyway, but because of the degenerative nature of the babies' situation, by the time the baby is actually clinically dead, most of his/her organs are useless for transplantation. This fact has caused the continued pressure for a change in this policy, since almost 400 anencephalic infants would qualify as potential organ sources annually (Truog, p. 200). A survey of clinicians and bioethicists on the Medical Task Force on Anencephaly, or who attended the 1990 Annual Bioethics Retreat in Minnesota showed that about 60% agreed that using anencephalics' organs before brain-stem functioning ceased should be made legal (Walters, p. 334). Rather than being a statement of using a live babies' organs, however, this may represent a picture of how many people thought organ transplant from unconsenting persons was moral since only about 65% of those respondents believed it was intrinsically moral to use anencephalics' organs at all. The rest felt it was immoral to ever use anencephalic babies' organs for transplantation.

I would contend that Veatch's criterion for neo-cortical death is entirely applicable to anencephalics for these two main reasons: the diagnosis is made much more easily for anencephaly than for PVS, and the prognosis is so certain. These two factors, and the fact that there is no element of consciousness in these babies, leaves little reason why they should be considered alive to the extent that effort is taken to extend or preserve their lives. There seems to be, therefore, no reason why organs could not be humanely removed from anencephalic babies, and definitively diagnosed PVS patients. Of the three major principles in today's bioethical community (beneficence, autonomy and justice), all are satisfied by such a position. Beneficence no longer applies to these patients, because they are not benefiting from these organs, in the same way that advanced and extraordinary life-saving techniques are often foregone in these patients, since they are not beneficial in the broader scope. Neither is autonomy an issue. Since this patient will never have consciousness, autonomy becomes meaningless. Finally, there are only two significant justice issues regarding these persons. First, does social justice allow us to spend exorbitant funds maintaining the lives of the cortically dead when millions of people go without adequate healthcare? Second, would not justice lead us to desire that some good be brought out of these tragic events, such as allowing organ harvesting from these patients before their organs deteriorate beyond transplantability?¹

DISORDERS OF THOUGHT

The situation I am calling for is substantially different from those seen in the Netherlands. Euthanasia is the "good death" of those who are now alive, or the killing/letting die of those who are by legal definition alive. What I and others who support the neocortical death model are calling for is a new definition of death, not the killing of those who are still alive. Neocortical death is qualitatively different from emotional and cognitive disorders because the former situation falls under a medical classification, the latter falls under psychological classification. While cognitive and emotional disorders can be diagnosed and treated medically, they still remain psychological issues because the capacity exists for psychological experience, while PVS patients and anencephalic patients have no current or future capacity for psychological experience. Given this, there seems to be little to support the idea that allowing the neocortical death model into public policy would degrade the rights or status of mentally deficient persons.

There is, however, the need to emphasize the need for appropriate care for such patients. If we are placing such a strong emphasis on the loss of consciousness as a criterion for death, then how should we treat those who seem to have lost cohesive conscious functioning? As with any intractable disorder, patients with intractable mental disorders need supportive care and humane treatment. But rather than just waiting for such patients to die as is the case with other kinds of intractable diseases that need constant care, such patients might live on for decades, so a different approach must be taken.

Stephen Post contends that just because the demented or retarded patient may have compromised cognitive, emotional and social skills, that does not mean that person totally lacks these capacities. He believes that an attempt should be made to capitalize on the functions that still exist, and to make these patients' lives as full as possible. For example, the demented patient mainly experiences cognitive and memory deficits. Such patients still have the ability to experience humor and relationships and "require emotional and relational well-being in the concrete present" (Post, p. 143). They can respond to their environments with "pleasure or fear" and "they still carry on conversations of a sort, even if what they utter is muddled and they no longer remember what was spoken just seconds ago" (p. 144). Therefore, "they can be treated in a manner that lessens the moments of terror that must accompany the felt sense of discontinuity and fragmentation of self."

Post commends the emergence of distinct sections of nursing homes called "special care units" (SCUs), which are designed to "enhance the non-cognitive well-being of people with dementia that our culture easily overlooks" (p. 145). He quotes Stanley Hauerwas (Suffering Presence, p. 162 and 176) while discussing the difficulty of finding a balance in treating the mentally incompetent:

people with retardation can receive "oppressive care, a kind of care based on the assumption that the retarded are so disabled that they must be protected from the dangers and risks of life." Their capacities and agency are easily underestimated, so that they are to some extent trained to be retarded. Societies have struggled to receive people with retardation in ways that allows them to flourish. The key to good care is not only to "do for" people with retardation, but to "be with" them, for a readiness to be with them bridges a gap between us and them.

When considering the PVS or demented patient in regards to narrative, one must take many factors into consideration. How did this patient want his/her story to end? Was s/he a person who felt the human story is best served by protecting the sanctity of human life at all costs, or did s/he feel there is a certain quality of life which supersedes mere existence? How do we as a community want our story to be told? Do we want other cultures and future generations to see a culture which hastened the biological death of its people in order to preserve what we define as dignity, or do we want them to see a society which clung to life with all means possible? Do we want to define the stories of our people by what we did during the active years, or do we want to broaden the scope to include our parent's expectations and planning of our births to the decades we spent in a nursing home to our children's and grandchildren's lives we changed for better and worse even after our deaths?

Does the PVS patient have a personal story or only a community story? For example, there are people who grieve for the PVS patient and people who heatedly argue over what to do with this person (the community story). But does the PVS patient without consciousness have a personal story? Part of being human is the knowing that tragedy will hit us eventually. Buddhist philosophy makes this acceptance the central core of their belief system, believing that it is the expectation of bliss that causes most of human suffering, since that expectation will never be satisfied. Suffering is the result of our choice to be continually surprised that our friends and family die, that we experience illness and to find out that both life and other people can be blatantly unjust. In accepting the truth that human life is suffering, then we short circuit this process and are able to experience life as it comes, not setting up fantasy worlds for ourselves, thus choosing to be happy with life as it is, as opposed to being frustrated with how we feel life should be.

Narrative allows us to press meaning into tragedy. The tragedy of a baby born with anencephaly, or of a friend struck with progressively worsening dementia can push the audience of that person's narrative into depression, anxiety, hopelessness or loss of purpose for life. If these responses were not felt, then the anencephaly or dementia of the friend would not be tragedy. But the fact remains that the survivors of such events must go on with life, and must therefore find some way to overcome the effects of tragedy. One way to do this is to incorporate that tragedy into our own stories and to discover what suffering and tragedy adds to us. A common philosophical device can be employed for a cursory examination of this process of discovery--hypothesizing the opposite. Imagine a person incapable to suffering, impervious to anxiety, doubt, frustration or pain. These kinds of people are often characterized in B grade movies as the classical bad guy--not the kind of person most of us want to be. ²

In our attempts to hide tragedy away, we often end up neglecting those people who are most dependent on us. The demented or retarded person, unlike the PVS patient, is alive and well, and needs his/her human needs fulfilled, including social, emotional and cognitive support. These people's stories, while not as coherent as they once had been, are stories none-the-less. Further, the tragedy and incoherence that has been attached to this person's story remind all who touch that person that life is not perfect. Every human story contains incoherent parts, and being confronted with the life of someone who will from now on have to live with an incoherent story, makes our own smaller incoherencies more meaningful if we will allow them to be so.

These thought-disordered people help the community to gain a more holistic perspective on what it means to be human. If we as community can incorporate their incoherent stories into the bigger story then we will see that life is more than just being rational, as the past few centuries of philosophy and science have tried to make us believe. Rather, being human is a balance of rationality, emotions, community (social capacity), will, etc. Angst is rampant among the people of our society due to the isolation felt by a disintegrating sense of community, denial of emotions, insistence on immediate gratification (denial of the fact that I should experience suffering or inconvenience) and blindness to the necessity of cultivating our own personal and community stories.

The application of narrative to our thought-disordered citizens can deepen our appreciation of what they contribute to our society, and can help us know how we should treat them. The application of narrative to our permanently unconscious citizens can help us decide how we will deal with their situation and how we want their story to continue. In either case, I believe that a combination of scientifically based clinical efforts combined with the guidance of a narrative perspective will provide more humane and moral ways of dealing with them, and will draw us closer to being the kind of society we want to be.

Braakman, R. "Prognosis of the posttraumatic vegetative state. Acta Neurochirurgica (1988) 95: 49-52.

Childs, Brian and Waanders, David. The Treasure of Earthen Vessels. Louisville: Westminster John Knox Press, 1994.

Cranford, Ronald. Consciousness: the most critical moral (constitutional standard for human personhood. American Journal of Law and Medicine (1987) 13: 233-48.

Downie, Jocelyn. Brain death and brain life: rethinking the connection. Bioethics (1990) 4: 216-26.

Dubose, Edwin; Hamel, Ron; O'Connell, Laurence, ed. A Matter of Principles. Valley Forge: Trinity Press International, 1994.

Goldberg, Steven. The changing face of death: computers, consciousness, and Nancy Cruzan." Stanford Law Review (1991) 43:659-684.

Hauerwas, Stanley. Suffering Presence. Notre Dame: Univerisity of Notre Dame, 1986.

Levy, David, et. al. Differences in cerebral blood flow and glucose utilization in vegetative versus locked-in patients. Annals of Neurology (1987) 22: 673-686.

Mitchell, Kenneth, et. al. Medical futility, treatment withdrawal and the persistent vegetative state. Journal of Medical Ethics (1993) 19: 71-76.

Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative states. The New England Journal of Medicine (1994) 330: 1499-1508, 1572-1578.

Nelson, James. Animals, handicapped children and the tragedy of marginal cases. Journal of Medical Ethics (1988) 14: 191-93.

Post, Stephen. Dementia in our midst: the moral community. Cambridge Quarterly of Healthcare Ethics (1995) 4: 142-47.

Ray, Joel. The body without a mind: an examination of cognitive brain death. Humane Medicine (1991) 7: 29-34.

Truog, Robert D. Brain death and the anencaphalic newborn. Bioethics (1990) 4: 199-215.

Walters, James W. Anencephalic infants as organ sources. Bioethics (1991) 5: 326-341.

Wildes, Kevin. Birth, Suffering and Death. Boston: Kluwer Academic Press, 1992.

2. This is by no means a justification for suffering. I would not agree with certain people that suffering, while a natural part of our human existence, is necessary for development of "character,." or is inherently beneficial to us. While suffering is capable of testing our character, and at times can serve to strengthen us, it can equally serve to destroy us, therefore the possible positive benefits of suffering do not seem to justify the acceptance that suffering is necessary (Hauerwas, p. 26). Moreover, is the strength we may obtain from suffering the kind of strength that is beneficial to our humanity?