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How Science is Redefining Death
Stephanie M. Ingersoll
Until not long ago, the word dead seemed unambiguous. Death (in a physiological sense) meant the cessation of both heartbeat and breathing, known as cardiorespiratory arrest. Today, most doctors view this criterion as insignificant, even irrelevant. In its place, they have adopted a set of neurological criteria that define death as "the absence of brain activity," regardless of other bodily functions. As Dr. Keith Meador, director of the Duke Institute on Care at the End of Life, explains, "The issue of brain death is not as much a part of an active conversation as it used to be" among members of the medical community. Which is to say that brain-death criteria have been accepted by doctors, lawyers, and theologians alike.
At the same time, an overwhelming majority of Americans seem to have accepted the idea of brain death, though it is unclear whether they do so because of their own conviction or in deference to medical experts.
According to a recent study conducted by Dr. James Dubois of Saint Louis University and Tracy Schmidt of Intermountain Donor Service, approximately 84 percent of Americans surveyed agreed that a person "can be dead even though machines keep him or her breathing," and almost 60 percent agreed with the statement that "someone can be dead even though his or her heart is still beating." Of those surveyed, 70 percent belonged to a religious or faith group, and 55 percent said they actively participate in their religion (not surprising, perhaps, since most religious institutions, including the Catholic Church, have sanctioned the use of brain-death criteria).
A Dangerous New Definition
But the debate over brain death is still far from settled. Some leaders in the medical and bioethics communities believe that the definition of brain death is still too narrow and should be expanded to take into account three additional concerns: (1) the belief that even limited brain activity does not ensure an adequate "quality of life," (2) the idea that the principle of "autonomy" means that patients should be allowed to define their own "meaningful standard" for death, and (3) utilitarian concerns over a shortage of organs for transplantation. As Rev. Kevin Wildes, associate director of the Kennedy Institute of Ethics, puts it, "We are only at the beginning of a whole set of ethical issues that will be with us for generations to come."
The dilemmas become clear when families and patients face decisions about end-of-life care. For example, what happens as medical science develops further and with it new efforts to redefine death? How will families make distinctions between "extraordinary" last-minute medical experiments and "ordinary" caregiving measures that were once new and untested procedures? How will they distinguish between the need for mercy toward the suffering and euthanasia, which abolishes the Christian responsibility to suffer with the suffering? How will we distinguish between the generous act of giving one's own organs to save another person and the immoral act of declaring one patient dead in order to acquire organs for another patient? In short, how will Americans-and specifically Catholics-determine which life-and-death technologies serve moral ends and which ones undermine them?
How We Got Here
The medical concept of brain death was developed in the United States in 1968 during a revolution in organ transplantation research. As M.L. Tina Stevens explains in Bioethics in America (2000), the coming of the "golden age" of organ and tissue transplantation is due largely to federal spending on biomedical research before World War II. The "payoff" came with the development of medical advances such as mechanical respirators and ventilators, prenatal diagnosis, and genetic screening-all had a profound effect on the shape of modern medicine, raising new life-and-death questions for patients and doctors alike.
Transplant doctors, working in the years following the postwar Nuremberg Trials and the Helsinki Declaration of 1964, were conscious of the distinction, as Robert Jay Lifton has described it, between "experimental medicine" and "Nazi medicine." Specifically, the Helsinki declaration distinguished between nontherapeutic research that was attempted solely to acquire information and unproven research in which patients bore the same risks as those who stood to benefit. Early transplant surgeons debated the meaning of the Nuremberg and Helsinki guidelines to judge what should and should not be done in the drive to further transplantation research. (Whether they honored these guidelines, in the end, is another matter entirely.)
"Transplantation was a classic example of therapeutic investigation," recalled Thomas Starzl, an early transplant surgeon. "What was done in transplantation in those days was sometimes foolish but never ignoble." What drove these "pioneering" surgeons above all was the desire to leave no avenue of experimentation untried. "How much more complete might the world have been if Mozart had been treated with renal transplantation instead of dying of glomerulonephritis at the age of 34?" Starzl wondered at the 1987 International Organ Transplant Forum.
Initially, transplant surgeons were unsuccessful in their attempts to move organs from deceased patients-defined as those whose heart and breathing had stopped-to living patients. But some doctors believed they could get transplantable organs from "heart-beating cadavers" who were still considered alive under the medical standards of the time. Brain death, as it came to be known, offered a possible solution. It also reflected a shift in thinking about the nature of death.
In 1965, a group of medical professionals, lawyers, and scholars met in London to discuss a series of recent transplant successes and the simultaneous lack of organs. Starzl and others initially had reservations about treating neurologically impaired patients as possible organ donors, worrying that such a move could lead to a deterioration in the care of some types of patients. They also feared that a new definition of death would open doctors who took organs from heart-beating donors to criminal liability. But at the end of the meeting, the seeds of the brain-death movement had been sown. "I came to the meeting opposed to the concept of heart-beating cadaveric donors," Starzl reflected in 1987. "I left convinced of the legitimacy of brain death."
Three years later, in 1968, the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Death "redefined" death to include respirator-dependent patients who showed no signs of brain activity. This shift appealed to many who viewed human organs as a necessary "resource" rather than as part of a human whole. As John McCain, a North Carolina doctor, noted at the time, human tissue supplies were like "oil." When first discovered, neither human tissue nor oil had been considered a "natural resource," but thanks to technological advances, both became among "our most precious resources." He added: "Before the capability of utilizing human tissue from one to help another was developed, human tissues were not considered a natural resource. In contrast to fossil fuel of which the supply is finite and the utilization rate is high, available human tissues for recycle use are bountiful but the utilization rate is low."
Following the development of the Harvard criteria in 1968, nearly 200 heart transplants were attempted over the next several years, with most of the patients dying within days or weeks. As a consequence, the majority of heart transplant surgeons imposed on themselves a decade-long moratorium on heart transplants.
Nevertheless, state legislatures moved quickly to adopt statutes establishing the legality of the commission's brain-death criteria. In 1970, Kansas became the first state to grant the Harvard guidelines legal status. In 1980, the National Conference of Commissioners on Uniform State Laws decided to forge a single national standard for when a patient should be declared dead. The result-the Uniform Determination of Death Act, crafted in a single day with the cooperation of the leading medical and legal associations-has been adopted by 43 states to date. Under the Death Act, a doctor can legally declare a patient dead using either the traditional criteria (irreversible cessation of circulatory and respiratory functions) or the new criteria of brain death.
Death, in other words, had been redefined.
The Moral Perils
Brain death typically follows massive damage to the head, often resulting from car accidents and similar traumas. Typically, such accidents cause the brain to swell, restricting the movement of blood. Once an unconscious patient has been admitted to a hospital and stabilized-which means the patient's blood pressure and breathing have been restored, often through the assistance of machines-the doctor administers a "trial of resuscitation." Tests are conducted to determine if there is an "irreversible" loss of all brain functions.
If it is shown that blood is not flowing to a patient's brain, that the body is unable to respond to various stimulants, and that the patient is unable to breathe on his own, doctors pronounce the patient brain-dead. The patient usually remains hooked up to "life-sustaining" machines, such as a respirator or ventilator, which allow his vital functions to continue despite the absence of neurological activity. This gives families the opportunity to decide if the patient's organs will be donated or if the machines will be switched off and the patient pronounced dead. In the case of organ donors, the machines remain on to keep blood flowing throughout the body, which prevents organs from deteriorating.
Advanced emergency medical technology and expertise-along with the enactment of laws requiring safety helmets, seat belts, and air bags-have enabled doctors to rehabilitate head-trauma patients who probably would not have survived three decades ago. This generally positive development, however, has created another dilemma. After the new criterion of brain death was implemented, the new availability of organs led to more organ transplantation. But in the years since then, there have been significant advances in emergency medical trauma care. The result has been more recoveries, fewer cases of brain death, and therefore fewer organs available for donations, which in turn has created an "organ crunch" in recent years.
Over the past three decades, some doctors have suggested broadening the definition of brain death to include various new "classifications" of patients, including anencephalic infants (babies born with a brain stem but without a cerebral cortex and often without a cranium), patients in "permanent vegetative states," and patients for whom brain death cannot be determined but whose hearts have stopped beating. (In the last case, this means using the "old" cardiorespiratory criteria for death when judgments according to the "new" criteria are inconclusive.) These changes are part of a larger project to enable doctors to pronounce as dead those patients experiencing an irreversible loss of "higher brain functions" rather than all brain function.
In 1994, the Pittsburgh Post-Gazette reported that the Pittsburgh University Medical Center had been removing transplant organs from so-called non-heart-beating donors for two years, including patients on life support who were not brain-dead but who showed "irreversible brain damage." As the article explained:
The non-heart-beating donors at Pitt fall in two categories-controlled and uncontrolled. The 10 controlled cases involved intensive care patients whose families had agreed to have life support removed and, subsequently, decided to allow organ retrieval.... The patients are moved to an operating room where life support is removed. In 15 to 30 minutes...the heart stops beating. After waiting two minutes after the heart stopped, the operating room team begins removing organs for transplant. The 14 uncontrolled cases involved patients who were brain dead or in the process of being declared brain dead when they suddenly suffered cardiac arrest. Organ retrieval, which normally would have been performed in the standard manner for the brain dead, had to be performed while resuscitation efforts were under way.
At the same time, advances in medical research have begun to show that brain-dead patients may not be ideal candidates for donating organs, since brain death happens only after damage to the body's organs has already occurred. For example, after the brain has swelled and blood flow to the head has ceased, the heart typically reacts by pumping harder, which causes strain on the organ. Research has also shown that the body reacts to brain death by infusing its organs with harmful chemicals, which may account for certain problems faced by organ recipients years after "successful" transplant operations.
The next wave of medical technology aims to address these problems, so that major organs can be moved from donors to recipients before the organs are damaged. Such medical progress is likely to increase the tendency to treat bodies and their parts as independent entities rather than as parts of a human whole. In October, surgeons at the University of Pittsburgh Medical Center were able to preserve a beating human heart outside of the body without the help of other organs by using a "portable organ preservation system." The technology is expected to be "in the hands of transplant surgeons" by the end of 2002, according to one of its creators.
Doctors are also considering ways to "harvest" organs from patients who will be disconnected from life support before they become brain-dead. As an article in the Denver Post explains:
The trick is to harvest the organs before the person's heart slows so much that the organs begin shutting down and are unusable. If the patient dies quickly-doctors say within 20 minutes-the organs are still good and can usually be transplanted. This year, doctors in Denver managed to do just that, recovering organs from a patient who wasn't brain dead but whose family decided to unplug a ventilator.... More than 1,300 people in Colorado are awaiting transplants-a demand critical enough that patients, surgeons, and medical ethicists are beginning to question the brain-death criterion and wonder whether something more liberal may be appropriate. But those doing the diagnoses say redefining the point at which death occurs is a slippery ethical issue-one that may have a reverse effect on organ donations because of fears that the practice is predatory.
And yet, even as leaders in the medical community seek to alter and re-alter the definition of death according to various "scientific" criteria, there is a separate push by some patients and families to create their own "individualized" definitions of death. In this movement for ever-greater "patient autonomy," families and patients are saying, "I want to be able to decide when I die.... I want to define when death occurs," notes Warren Reich, a professor of medicine at Georgetown University and editor of the Encyclopedia of Bioethics.
They reject the application of a "static medical standard" to all patients indiscriminately and are unwilling, as Duke University's Keith Meador explains, to perceive death as "just a mechanical, medical occurrence" at the end of a patient's life.
These two trends have become the death debate's Scylla and Charybdis: On the one hand, an ever-shifting scientism, which defines death according to a utilitarian agenda (expanding the pool of organ donors); on the other hand, patients who claim a "right to die"-and families and doctors who claim a right to kill-on the grounds that death should be a premeditated choice, not an unchosen event.
Death in a Culture of Life
One of Pope John Paul II's lifelong projects has been to find a way of dealing with the new possibilities offered by modern science while at the same time nurturing a "culture of life"-a culture rooted in the unchanging dignity of the human person. In his "Gospel of Life" (1995) and later speeches, the pope has explained how advances in neurological science do not necessarily stand in opposition to "moral certainty" about death. We can honor the contributions of modern medicine, he insists, without descending into scientific idolatry.
Such matters are not new to the Church. In 1957, as the International Congress of Anesthesiology was trying to determine when it was appropriate to undertake and to cease resuscitative measures on unconscious individuals, its members turned to Pope Pius XII for guidance. The pope responded that physicians must not act without authorization from the patient's family and that the family was bound to use "ordinary," not "extraordinary," measures to prolong life. The pope also indicated that the Vatican looked to and trusted the judgments of physicians.
Not until 1985, however, did the Pontifical Academy of Sciences actively deliberate on the issue of brain death, inviting proponents and opponents to discuss the neurological and ethical issues. While there has been considerable debate within the Catholic Church on the issue of brain death since then, the Harvard guidelines are today sanctioned by the Vatican as a morally sound and ethical means for determining death.
Opposition to brain death appeared recently in the form of a published essay by Bishop Fabian Wendelin Bruskewitz, Bishop Robert Vasa, and others in the March 2001 Catholic World Report. The authors contended that the pope's position, as presented in his August 2000 speech before the International Congress of the Transplantation Society, has been misinterpreted by some members of the medical profession who see it as a "tacit unconditional approval for organ transplantation." The authors insist that the speech was intended as a strong condemnation of unethical organ transplantation procedures. They maintain that the pope "did not suggest that this debate is resolved" or offer approval of current medical practices related to organ transplantation and brain death. The pope said that the use of brain-death criteria "[do] not seem to conflict with the essential elements of sound anthropology." The bishops find the use of the word seem to be significant and "intentional."
According to the pope, brain death means the "complete and irreversible cessation of all brain activity." The bishops point out that the use of the phrase "complete and irreversible cessation" sets a more rigorous standard than the Universal Declaration of Death Act's "cessation of function." They say the pope's standard requires medical professionals to prove not only that the brain has entirely lost its ability to function but also that the patient will never recover this ability.
In their statement, the bishops reject the pope's acceptance of the Harvard neurological criterion, insisting that the "pope has been misinformed" about the existence of "clearly determined parameters" accepted by the international scientific community. "In fact, no such clearly determined parameters exist," the bishops claim.
The bishops maintain that the only morally sound alternative is to declare death only when there is evidence of the "undeniable biological signs that appear after death": They insist that a definition of death should include "destruction" of the circulatory, respiratory, and neurological systems, which the Harvard criteria do not.
Debate also appeared in the Spring 2001 issue of the National Catholic Bioethics Quarterly, where members of the Catholic community diverged in their interpretation of "total and irreversible loss of all capacity for integrating and coordinating physical and mental functions of the body as a unit" (the formulation of the Pontifical Academy of Sciences in its clinical definition of death).
In his August 2000 speech at the International Congress on Transplants, the pope laid out the condition for death and addressed its connection with organ transplantation:
Vital organs which occur singly in the body can be removed only after death-that is, from the body of someone who is certainly dead.... When can a person be considered dead with complete certainty? In this regard, it is helpful to recall that the death of the person is a single event, consisting in the total disintegration of the unitary and integrated whole.
In general, the Church refrains from making medical decisions-a task it believes should be left to medical experts-and limits itself to "comparing the data offered by medical science" in the light of the "Christian understanding of the unity of the person." The pope has said that this balance is necessary because medical science at times can be driven solely by what is "momentarily achievable," a motivation ungoverned by a respect for human nature itself. He has defended the use of medical criteria as a "scientifically secure means" for identifying the "biological signs" that follow death but not "as the technical-scientific determination of the exact moment of a person's death." "What is technically possible is not for that reason alone morally admissible," he has cautioned. The primary goal of medicine must be to affirm life.
But in the pursuit of this balance between the Christian idea of human dignity and the facts of modern medical science, the constant danger is that the Church may render too much unto science-and, in particular, too much unto experts who do not share the ethical assumptions and obligations of the Church.
The construction and reconstruction of brain-death criteria-and therefore the construction and reconstruction of death-has been achieved, at least in part, through a manipulation of language. Modern medical language has yielded such terms as "excessive care," "living cadaver," "brain-stem death," "passive euthanasia," and "whole brain death," among others. It is a malleable language, about which the experts themselves are in perennial disagreement.
Every new medical technology has the potential to lead to a reevaluation and redefinition of the nature of life and death. Doctors, policy makers, and ethicists often make new exceptions to what was previously considered a fundamental doctrine of medical and moral ethics. This constant revision seems to result in several possibilities: a winnowing down of the safeguards protecting previously absolute ethical judgments, post facto justifications for experimental procedures, and new rationales for previously unorthodox treatments.
It would be naive to think that such difficult problems can ever be solved once and for all. The pope's project of reconciling Catholicism and modernity supposes that a harmony, or middle ground, can be achieved between the struggle for human dignity in the face of human suffering and therapeutic medicine's drive to perfect human life in the here and now-a drive that can tempt us to classify lives and calculate death, to "fix" the weak and "engineer" only the strong. Brain death demonstrates just how serious this difficulty can be and how good intentions (like healing the sick or showing mercy to the suffering) can lead to evil acts (like killing off the dying and mining their "resources"). These dilemmas will become only more complicated as we enter the genetic age, which promises to challenge every assumption about human nature.
Stephanie M. Ingersoll is a writer for the Bureau of National Affairs in Washington, D.C., where she covers national biotechnology and energy policy.