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Not quite dead?: The case for caution in the definition of "brain death"
The Church is very clear on the meaning of death. "Death can mean decomposition, disintegration, a separation," Pope John Paul II said in a 1989 address to the Pontifical Academy of Sciences. "It occurs when the spiritual principle which ensures the unity of the organism no longer exercises its functions in and upon the organism, whose elements, left to themselves, disintegrate."
"Brain death" is defined by the Uniform Determination of Death Act (UDDA), which has been adopted by most American states, as the "irreversible cessation of all functions of the entire brain, including the brain stem." The UDDA states that patients may be pronounced legally dead either when they meet the traditional criteria for death (the cessation of breathing and the absence of a heartbeat) or when they are diagnosed as brain dead. Due to the use of artificial life support, many patients are now pronounced brain dead before their hearts and lungs stop functioning.
The term "brain death" entered common usage in the medical world at approximately the same time that new technology made possible the first transplants of vital organs. In 1968 the "Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain-death" (which was published in the Journal of the American Medical Association), stated "Our primary purpose is to define irreversible coma [that is, brain death] as a new criterion for death." The report offered two reasons for this approach. First, advances in medicine were allowing brain-damaged patients to survive for extended periods on cardiac life-support systems. Second, the report argued that "obsolete" criteria for the determination of death were aggravating the shortage of organs available for transplant. Because their hearts were still beating, brain-dead patients possessed vital organs that were in good condition. Now these patients could be used as a source for transplantable organs. The Harvard report provided the first new definition of death to be based on the apparent absence of brain activity, and the first standard by which such deaths could be determined.
The brain-dead patient does not look like a cadaver. He still breathes, albeit with the help of a ventilator. His color and blood pressure are normal. However, while the patient may not look different than he did before being declared brain dead, and his symptoms may not have changed, he is now legally dead, and may be buried. More to the point, his vital organs may be removed for transplant. This procedure is usually carried out while the patient is on the ventilator, in order to maintain oxygenation of the organs. Thus the brain-dead patient is not treated like a cadaver; he may be kept on artificial life support in order to preserve the health of his organs.
While the exact legal criteria for determining brain death vary from state to state, generally speaking doctors are required to evaluate brainstem reflexes, such as the response of the eye to light, the response to ice water in the ear, and the reflexes that control gagging and swallowing. The patient may be "weaned" from the ventilator to determine whether he will continue breathing on his own. Doctors take into account the nature of the trauma that caused the patient to lapse into the coma. And any other factors that could produce symptoms similar to those associated with brain death, such as the use of potentially anesthetizing or paralyzing drugs, must be eliminated. The final diagnosis may be confirmed by an electroencephalogram (EEG) or a study of cerebral blood flow, but these tests are optional.
The mainstream view
The vast majority of Catholic physicians and hospitals echo the mainstream view of the medical community, accepting the diagnosis of brain death. David Blake, executive director of the Center for Health Care Ethics at the St. Joseph Health System in Orange, California, is an articulate advocate of both the brain death diagnosis and the donation of organs. He couches his argument persuasively in religious terms.
"Christians should accept death and celebrate death as renewal, and celebrate death as a perfectly natural occurrence," Blake says. He continues:
Blake indicates that it is uncommon for the family of a comatose patient (which he describes as "a decapitated body in a bed") to question a diagnosis of brain death. However, he says, when this situation arises, "it usually turns out to be a very complicated and difficult issue." In such cases, he says, when health-care workers announce that the patient is legally dead, "the family begins thinking that is inappropriate, because they think that really what's going on here is that the person is only suffering from some state of coma." The family members may react with "bewilderment and resistance," he explains, because they are "being told that their loved one is now dead," when from their perspective his condition "doesn't look like it's any different from what it was two days ago."
Ordinarily, Blake continues, doctors can readily resolve the family's questions. He explains:
Once they have received that explanation, Blake says, family members typically conclude: "Okay, now is the time to begin grieving, now is the time to begin praying for the departed soul, now is not the time to be worrying about what's going on with the ventilator."
Little room for opposition
While hospital personnel will make every effort to alleviate the family's concerns before removing life support, Blake emphasizes that there is no legal obligation for them to do so. In fact, he points out, once the diagnosis of brain death has been made, "if a physician were to walk into that room and turn off the ventilator, there is absolutely nothing anyone can do to the physician. There's no legal duty to provide medical intervention to somebody who's dead."
Blake has little patience with families who cite religious convictions as their justification for leaving a brain-dead relative on a ventilator. In the cases where he has encountered such arguments, he claims, he eventually learned that the family's resistance was really motivated not by genuine religious belief, but rather by other factors such as unresolved tensions or psychological disturbances within the family. Religious doctrines, he says, are used "as a way of masking what are other problems." Blake concludes: "It doesn't seem to me that there is any coherent way of taking a religious stand here, other than leading yourself into some kind of absurdity."
Msgr. Steven Rohlfs, Vicar for Health Care for the Diocese of Peoria, Illinois, agrees with Blake that "while we would sympathize with the rights of the surrogate decision maker, we would also sympathize with the rights of the hospital, and the physicians who are trying to do something that's futile. No one is ever required to do anything that's futile to preserve their life." While Msgr. Rohlfs is acquainted with the arguments of those who question the diagnosis of brain death, he points out that it is "very rare" to encounter physicians or even theologians who would accept those arguments. Although he concedes that any definition of death will involve some ethical difficulties, on balance he concludes that "brain death has been accepted as, practically speaking, irreversible for so long that I think that it's generally conceded that that is the norm for decision making. Catholic moral theology would have no problem with that."
In fact, if the family of a comatose patient continues to oppose the doctors' decision to remove life support, David Blake admits that hospital will eventually make it clear that the decision is no longer in the family's hands. "In the long run," he reveals, "you say, 'Look, as of tomorrow at 5:00 this is what we're going to do.'"
That sort of decisive action can be necessary, Blake argues, because the hospital's duty to be sensitive to the patient's family may eventually run into conflict with its obligation to treat the legally dead patient appropriately, "and continuing very aggressive medical interventions on a dead person is an inappropriate way of dealing with the death of a person. Having them strapped into an ICU bed, hooked up to all kinds of machines, is not an appropriate way to deal with a dead body." He adds that at a time when many people still lack access to quality health-care services, it is an offense against justice to expend valuable resources in "ventilating a cadaver."
However, if the brain-dead patient is to be used as a source for organ transplants, his body will remain attached to life-support systems. Blake does not deny that treating brain-dead patients "appropriately" has the side-benefit of obtaining organs, as well as freeing up hospital resources and money.
In his own assessment of the morality of removing life support, Msgr. Rohlfs offers the familiar distinction between "ordinary" and "extraordinary" means of medical treatment. "The presumption is always to put on the respirator, but those presumptions yield when it will simply do no good any longer," he says, adding "or when the person considers life at this cost to be disproportionately burdensome." But that sort of analysis is problematical in cases in which brain death has been pronounced; what does it mean to say that life is "burdensome" for a corpse?
That sort of conceptual confusion is typical of discussions about brain death. Dr. Christopher DeGiorgio, an associate professor of neurology and neurological surgery at the University of Southern California, admits that the term "brain death" is itself a misnomer. "From a purely metaphysical point of view, one can still argue that as long as the heart is beating, you have a human being," he allows. Thus he reasons that the diagnosis of brain death is based on a legal definition rather than a medical judgment:
Despite these statements, DeGiorgio, a Catholic, still believes that it is morally acceptable to invoke the diagnosis of brain death in order to procure organs for transplant. While he acknowledges some "modest debate among theologians" on the subject, he points out that "the Catholic Church recognizes the validity of brain death guidelines."
The debate over brain death
The "modest debate" over brain death actually extends beyond the realms occupied by moral theologians, to include physicians and bioethicists as well. Indeed opponents of the brain death diagnosis can be found on opposite ends of the ordinary spectrum of moral opinion.
The objection most frequently raised is that the current criteria for determining brain death do not and cannot adequately test for the presence or absence of an irreversible coma. In a book entitled Life, Life Support, and Death, co-authored by nine physicians, and published by American Life League, it is argued:
The critique of the brain death diagnosis set forth in that paragraph is buttressed by the accounts of patients who have been diagnosed as brain dead, but who have later regained consciousness. Proponents of the brain death approach insist that such cases are so rare as to be practically irrelevant. David Blake says that the likelihood that a "brain-dead" patient could recover is "way beyond the pale" — going so far as to say that the likelihood of such cases is "equal to people rising from the dead." Christopher DeGiorgio agrees that any such case would be "extremely rare." However, a casual search of pro-life resources readily produces evidence of ten such cases, the most gruesome being one (described in the Journal of California Nurses for Ethical Standards) in which a "brain-dead" patient put his arm around the assisting nurse as he was about to have his heart removed for transplant.
Even granted that such cases are rare, and even assuming that most organ donors have been accurately diagnosed according to the legally criteria for brain death, a more fundamental question still remains. Are "brain-dead" patients indeed dead? Is it correct to equate irreversible coma with death?
According to Dr. Paul Byrne, one of the primary authors of Life, Life Support, and Death, the term coma, or even irreversible coma, "is a term for someone who's alive, not someone who's dead." Indeed, a key objection to the acceptance of brain death is the argument that the practice confuses prognosis with diagnosis. The word "irreversible" is frequently invoked in discussions of brain death. Yet the simple fact that the patient is irreversibly comatose, and will in all likelihood be dead shortly, does not justify the conclusion that he is dead.
Byrne, a pediatrician and neonatologist who has published articles on brain death in several medical journals, concludes: "To refer to someone who is in an intensive care unit on a ventilator, whose heart is beating, and [who has] blood pressure and other findings that we identify with being alive, as a cadaver, is simply not the truth."
Byrne also argues that the criteria used to determine brain death are inherently contradictory. Those criteria require that the patient should not be hypothermic — that his body temperature should be normal. (A variation in temperature might jeopardize the viability of the vital organs.) However, the presence of hypothermia is an indication that the brain is still actively performing one of its functions: the regulation of body temperature.
Moreover, surgeons have observed that brain-dead patients frequently react strongly to surgical incision at the time of organ procurement, with a rapidly increasing heart rate and a dramatic rise in blood pressure. Because of these signs of distress, donors are sometimes anesthetized during organ retrieval. Again, one must ask, what purpose would anesthesia serve for a corpse?
Byrne and his colleagues bring the argument to its logical conclusion when they maintain that it is impossible to remove vital organs from a corpse and successfully use those organs for transplant. If brain-dead patients were actually dead by classical criteria, the lack of oxygen would quickly cause their organs to deteriorate. According to Byrne:
Pinpointing the time of death
The popular acceptance of brain death is based in part on the perception that a brain-dead patient could subsist indefinitely on life support. Doctors, ethicists, and sympathetic observers fear that family members might become involved in a sort of bizarre perpetual wake, awaiting a funeral that would never occur. But Dr. Byrne argues that such fears are unfounded.
If the brain has truly ceased to function, Byrne explains, the heart will soon be affected. While a functioning brain is not strictly necessary in order for the heart to continue beating, without the aid of the brain-stem the heart will beat at a much slower rate than normal, and blood pressure will quickly drop. So if death has truly occurred, it will soon become manifest. The heart, Byrne observes, cannot "do its thing for any great length of time without the other parts of the body."
Dr. DeGiorgio confirms this observation. Although the heart does function independently, he concedes, "when somebody is truly brain dead, after several days the heart function deteriorates severely. So the heart may function temporarily without a functioning brain, but over a period of a few days, the basic rhythm of the heart will deteriorate, and the patient's blood pressure will deteriorate."
Thus it is possible to test the diagnosis of brain death by continuing to ventilate the patient. If cardio-respiratory death — that is, death in the classical sense — has occurred, in a short time the patient's heartbeat will slow and become irregular, despite continued ventilation. Eventually, no amount of artificial life support will be able to sustain the heartbeat.
However, by the time this process confirms the diagnosis, the vital organs may have been damaged by a dead individuals were left on life support, some would soon exhibit unmistakable signs of death. However many would simply continue to survive in a comatose state. Many doctors resist accepting that possibility. According to Dr. DeGiorgio, "You can keep somebody on life support for a few days or a few weeks at the longest, but generally people who are truly brain dead do not survive past two weeks." Yet Byrne can cite cases of brain-dead individuals who, after the original diagnosis, have survived in a "brain-dead" condition for long periods of time — even for years.
Further evidence is offered by Dr. Alan Shewmon, Professor of Pediatric Neurology at UCLA Medical School. In a July 1997 address to the Linacre Centre for Health Care Ethics, Shewmon cites 140 cases of prolonged survival — for months, sometimes years — by brain-dead patients. In the most extraordinary of these cases, the patient has survived fourteen years. During that time, multiple tests have been performed, and detected no brain function. Yet the patient has grown, overcome infections, and healed wounds. Like many such patients, he has survived without extraordinary medical intervention beyond a ventilator and nursing care.
How can a patient with no apparent brain function continue to live, assimilate food, grow, and demonstrate other signs of life for a period of years? One is forced toward either of two possible conclusions, either of which strikes at the basic premises of the argument for brain death. It is possible to argue that modern medicine cannot accurately detect the presence or absence of brain function. Alternatively, one could argue — as Shewmon did argue in his Linacre address — that these patients do indeed lack brain function, but are nevertheless living human beings, who derive their bodily unity not from a central coordinating organ like the brain, but from the "mutual interaction among all the parts of the body."
The philosopher Joseph Seifert has written extensively on brain death. Seifert, a student of Dietrich von Hildebrand, is founder and rector of the International Academy of Philosophy in Liechtenstein. Speaking in a phone interview, he quickly listed several empirical arguments against brain death. The brain is not the integrating factor of the body, he states, citing the long list of functions which are not mediated by the brain, and which continue after the diagnosis of brain death. Some patients exhibit signs of consciousness despite the absence of a functioning brainstem, he adds. And the unborn child is considered a human person from the moment of conception, although the brain does not develop for several weeks.
Underlying all of these arguments, however, is the fundamental point that it is not the doctor's job to pinpoint the location of the human soul. Death, according to the universal Catechism (1005), occurs when "the soul is separated from the body." In defining brain death, medicine has now in effect identified the human soul with the human brain. From this materialist viewpoint, when the brain is "dead," what is left is merely a collection of organs, not a human person.
It is often said that in the brain-dead patient, certain organs remain alive, although the brain — and thus the patient himself — is dead. On the contrary, argues Seifert:
While the brain does serve to "fine-tune" the body's organic unity, the source of this unity is not found in the brain, but in the soul.
Seifert notes another questionable philosophical premise in the argument for the acceptance of brain death: the identification of human consciousness with human personhood. This argument is often used by advocates of what is sometimes termed "higher brain death," he notes. Rather than concentrating on the ability of the brainstem to regulate and integrate the bodily functions, some doctors and ethicists focus on the brain as the source of consciousness. In their view, as Seifert explains it, when the brain ceases to function, "then you have still a living human organism, but no person, because by the loss of brain function, the organism has a loss of any conscious life."'
From this perspective, it is a moot point whether a "brain-dead" patient is actually dead in the classical sense, because having lost consciousness the patient has suffered such a loss in "quality of life" that he might as well be dead. This reasoning is flawed, Seifert observes, because human life cannot be identified with human consciousness, nor can existence of the person be summed up completely by his actions. He continues:
Seifert concludes that the argument for brain death begins with "a materialistic identification of the soul with brain function, or it is a sort of actualism that does not see that our life and our existence lies deeper than simply being identifiable with all kinds of activities and functions." For his part, he insists that the mere fact that the brain has apparently lost its ability to function does not, by itself, indicate that the person is dead.
The Catechism of the Catholic Church (2296) encourages "organ donation after death," calling it a "noble and meritorious act." It warns, however, "it is not morally admissible directly to bring about the disabling mutilation or death of a human being, even in order to delay the death of other persons."
Whether the practice of removing vital organs from brain-dead patients actually kills those patients is another question, and one which the Church continues to examine. In 1957, at a time when new technological advances had made it possible to keep unconscious patients alive on artificial life support. Pope Pius XII acknowledged the responsibility of "the doctor and especially the anesthesiologist" to determine the moment of death of an unconscious patient. But he stressed that the determination was not to be made arbitrarily. Rather, Pius XII asserted that "considerations of a general nature allow us to believe that human life continues for as long as its vital functions — distinguished from the simple life of organs — manifest themselves spontaneously or even with the help of artificial processes." (A portion of this statement has been widely misquoted to read: "unless with the help of artificial processes.") In 1986 a working group of the Pontifical Academy of Sciences, set up to study the question of brain death, concluded: Death has occurred when: A. the spontaneous cardiac and respiratory functions have definitively ceased; or B. An irreversible cessation of every brain function is verified."
Because the 1986 report met with some criticism, another report was published in 1989. This second report endorsed the conclusions of the first, but acknowledged the dangers of confusion, and in particular warned against identifying death with unconsciousness. In addition, it included as an addendum a paper by Dr. Seifert, who voiced an opposing viewpoint.
Now, in light of continuing debate, the Pontifical Academy for Life has been asked to examine the topic of brain death once again. The reasons for this new study have not been revealed to the public, and members of the Pontifical Academy are asked to keep their proceedings confidential. But it is possible that the new study has been commissioned because some members of the working group which considered the question earlier have now changed their views. At the time of the 1989 report. Dr. Alan Shewmon, for one, was a strong proponent of the "whole brain death" argument. But Shewmon — who serves on the task force which is now re-examining the issue — has subsequently come to reject all brain-based definitions of death.
On the other hand, the new study may be prompted by requests from members of the Catholic hierarchy.
Last year the Archbishop of Cologne, Cardinal Joachim Meisner, issued a strong statement of opposition to the brain death approach. Responding to public debate in Germany on the subject. Cardinal Meisner spoke out in unmistakable terms:
While the Pontifical Academy continues to investigate the means of determining the precise moment at which the diagnosis of death can be accurately made, the Church is very clear on the meaning of death. "Death can mean decomposition, disintegration, a separation," Pope John Paul II said in a 1989 address to the Pontifical Academy of Sciences. "It occurs when the spiritual principle which ensures the unity of the organism no longer exercises its functions in and upon the organism, whose elements, left to themselves, disintegrate."
Dr. Paul Byrne feels that the Pope's language, involving the terms "decomposition," disintegration," and "separation," offers the key to defining death. "Once one goes from being alive to being dead," he says, "not only is there an absence of vital signs of life, but there is destruction. And the destruction, the disintegration, the dissolution has to be sufficient that the organism no longer exists."
Thus, in Life, Life Support and Death, Byrne and his colleagues advocate a return to the traditional, cardio-respiratory standard for determining death, with the caveat that "No one shall be determined or declared dead unless and until there is destruction of at least the three basic unifying systems of the body, namely, the circulatory and respiratory systems, and the entire brain." Although application of this standard "would preclude transplantation of unpaired vital organs," the authors believe that "it is the only acceptable standard to ensure that living human beings are not treated with the scientifically inaccurate and morally repugnant haste that leads to a premature grave."
Dr. Shewmon proposes another solution to the problem. Addressing the Linacre Center in 1997, he insisted that "my position against brain death must not be misconstrued as necessarily anti-transplantation." It is possible, he contended, to devise an approach that allows transplants without violating moral norms. Under Shewmon's proposed scheme, after a patient had been removed from life-support systems — in a way that neither caused nor hastened death — organs could be removed as soon as the heartbeat and circulation stopped. Shewmon pointed out the cessation of the heartbeat must be final, but not necessarily irreversible; that is, although it might be possible to resuscitate the heart, that would involve the use of "extraordinary means" which would be inappropriate to the case.
While this approach may follow the letter of the law, it seems difficult to reconcile with the Christian notion of death. In Shewmon's scenario, the harsh glare of the operating room replaces the prayerful deathbed, and the transplant team replaces the priest and family at the side of the patient — who has been draped and propped for the operation.
Moreover, Shewmon's proposal would take the donor and his family into the hazy moral realm which surrounds decisions involving the removal of life support. There is already widespread confusion — not to mention a broad range of interpretation — regarding the issues of using "extraordinary means" and "pulling the plug." It seems safe to predict that pressure would be brought to bear on families of comatose patients to remove life-support systems before that step is truly appropriate. Therefore, the Shewmon approach might unwittingly aid those who wish to take organs even from individuals who are on life-support systems but are not included under the current criteria for brain death.
The slippery slope
Although no discussion of brain death can take place without a companion discussion of organ transplantation, ultimately the brain death issue can also be seen in the context of a progressive devaluation of human life. Byrne even believes that the acceptance of brain death was a major step in the acceptance of abortion. When doctors adopted the "Harvard criteria" for determining brain death, he reasons, they were accepting for the first time the notion that the apparent absence of brain function was reason enough to say that an individual was something less than human. "That was part of preparing them for the acceptance of abortion," Byrne says. "If you have certain human beings in intensive-care units, and you can call them something less than human so you can get organs, why can't you have other human beings that are out of sight in the uterus, and call them less than human so that we can kill them also, or use them for our own purposes?"
In an address to the Second International Symposium on brain death, in 1996, former University of Chicago professor James J. Hughes stated his position with equal clarity:
If some ethicists worry that the acceptance of brain death might be the first step down the proverbial slippery slope, their worst fears might be confirmed by an article written by Dr. Robert Truog, published in the Hastings Center Report of January-February 1997 and entitled "Is It Time to Abandon brain death?" Truog, who is an associate professor of anesthesia at Harvard Medical School, echoes Byrne's argument that brain dead patients are not really dead, stating, "there is evidence that many individuals who fulfill all of the tests for brain death do not have the 'permanent cessation of functioning of the entire brain."' The concept of brain death is "incoherent in theory and confused in practice," Truog continues, and so he recommends a return to the traditional definition of death, based on cessation of respiration and circulation rather than neurological criteria.
However, the problem of obtaining organs for transplant would remain. Truog examines various ethical solutions to this problem, and rejects most of them as "contrived and even somewhat bizarre." Yet while hypocrisy appears to bother Truog, killing is not so repugnant to him. One way to solve the organ-transplant problem, he suggests, "would be to abandon the requirement for the death of the donor prior to organ procurement and, instead, focus upon alternative and perhaps more fundamental ethical criteria to constrain the procurement of organs, such as the principles of consent and nonmaleficence." With the prior consent of the donor or his surrogate, he suggests, vital organs could be removed from living donors under general anesthesia.
Truog notes with satisfaction that this approach would open the door for the removal of vital organs from patients who are diagnosed as being in a "persistent vegetative state," or from anencephalic newborn infants. (Patients in both of these categories are currently barred from being considered as potential donors.) However, he observes "the most difficult challenge for this proposal would be to gain acceptance for the view that killing may sometimes be a justifiable necessity for procuring transplantable organs."
Monica Seeley "Not quite dead?: The case for caution in the definition of 'brain death'." Catholic World Report (February 1998): 48-55.
This article is reprinted with permission from Catholic World Report.
Catholic World Report is a monthly news magazine covering international news from a distinctly Catholic perspective. Read and quoted by top Church leaders and other publications, CWR not only reports on important events in the Church, it helps shape them. CWR has been at the forefront in public debates about clerical abuse, liturgical renewal, the Eastern churches, and threats to religious freedom.
Catholic World Report also publishes Catholic World News.
Monica Seeley writes from Ojai, California. A portion of this article is adapted from an earlier piece which originally appeared in the Los Angeles Lay Catholic Mission.
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