In the late 1960s the Uniform Anatomical Gift Act was passed into law in every state in this country. It allows individuals, while still living, to authorize the donation of any parts of their body after death. If the deceased person had not authorized such donation but also had not prohibited it, specified family members are permitted to give authorization. The National Organ Transplantation Act, passed by Congress in 1984, established a national registry and donor-recipient matching system while also prohibiting the sale of organs for transplant. Some states have, in addition, passed laws requiring medical personnel to ask the family of the deceased to donate his or her organs. Thus, we have given social approval to a system in which needed organs are donated but not to systems in which they are routinely taken without permission or sold as commodities on the open market. Nevertheless, this system of giving and receiving has not provided as many donated organs as are desired for transplant purposes. On some occasions organs are given by living donors, but this can be permitted only within clear limits. Years ago Paul Ramsey called attention to one of those limits, recounting the following fictitious case study:
Many months ago the fifteen-year-old son of Mr. Roger Johnson was admitted to a Houston, Texas hospital for tests to determine the cause of his generally debilitated condition. Use of the latest available diagnostic techniques and equipment eventually led to the conclusion that the lad was suffering from a progressively deteriorating congenital condition of the valves of the heart. The prognosis communicated to the distraught Mr. Johnson was that his son could not live past the age of twenty, and that there was no known treatment for the malady with which he was afflicted.
At first Mr. Johnson tried to resign himself to his son’s plight. Then he began to brood and think of the pleasures and joys of adult life which he, at the age of forty-two, had already known, but which his son would never know. The more he thought of this, the less willing he became passively to accept the doctors’ verdict. Finally he thought of a means by which his son’s life might be spared.
His plan, which he communicated to a physician friend, was an uncomplicated one. In light of the success of recent heart transplant operations with unrelated donors and donees, he reasoned, there must be a high probability that a transplant of the heart of a genetic relative would be successful. Accordingly, he would simply donate his own heart to his son. He had lived a full life, he said, and he could leave his son well provided for financially. His wife had died several years earlier, so that complication was not present. His own parents had no rightful claim to his continued life. He asked his friend’s aid in finding a physician who would perform the operation. Not without considerable misgivings, his friend complied, eventually finding a heart surgeon eager to attempt the transplant of a heart from a healthy and related donor not in extremis at the time of the operation.
In the course of preparation for the transplant, elaborate precaution was taken to ensure that the son would not know the real nature of the proposed operation. He was told simply that a transplant operation on his heart was to be attempted in the hope of prolonging his life, and he agreed to try it with full knowledge that death could certainly result if the try were unsuccessful. In reality, of course, it was contemplated that Mr. Johnson’s heart would be removed from his chest while he was under general anaesthesia and that it would be transplanted in the chest cavity of his son.
When the date of the scheduled operation arrived, the father went to the son’s room, affectionately wished him good luck, and returned to his own room to be prepared for his own operation. He was eventually placed under general anaesthesia, and taken to a special operating room to await the transfer of his heart to an oxygenating and circulating “heart-lung” machine.
He is in the operating room now, and the surgeon is scrubbing. You are chief of staff in the hospital in which the operation is to take place. You had no prior knowledge of the operation, but this is frequently so. A worried nurse has brought you word of the planned operation on this occasion. You have power to stop the operation. Should you do it?The case is striking because it makes clear what Christian rhetoric about “love” and “freedom” sometimes blurs: Not every gift can properly be given by those who know themselves to be creatures rather than Creator. The body, as the place of personal presence, has its own integrity, which ought to be respected. Indeed, because we are regarded as stewards rather than owners of our bodily life, the Roman Catholic and Jewish traditions generally forbade self-mutilation. These traditions have become willing to approve the self-giving of organs or tissues for transplantation as long as the donation will not cause grave harm to the donor’s bodily life. Certainly any organ donation”such as that of heart, liver, or lung”that would cause death or great harm to a living donor is not a proper work of creaturely love. (Interestingly, an increasingly secular society, in which many people do not share Christian and Jewish disapproval of suicide, may find it hard to explain why such donations should be forbidden or why the case study recounted from Ramsey should remain fictitious.) In general, therefore, we may regard donation of a kidney or of bone marrow as significantly different from donation of heart, lung, or liver. (In recent years partial grafts of liver and lung tissue, which do not involve transplantation of the entire organ, have been attempted. To the degree these procedures are successful, our evaluation of them will, no doubt, be similar to our evalution of bone marrow donation.) Yet, a living donor’s gift even of tissue or a paired organ (such as the kidney) should not be approved without careful reflection. Doctors have in the past been hesitant to transplant kidneys from living, unrelated donors, and it is good that they should be. We should want them to be reluctant to subject a healthy person to the risks of a major operation and the loss of one kidney even if that person is eager to make this bodily gift. It is true, of course, that we ought always be ready to risk harm to ourselves for the sake of others. But it is one thing to aim at my neighbor’s good, knowing that in so doing I may be harmed; it is another to aim at my own harm in order to do good to my neighbor. We need not oppose all organ donation from living donors, but neither should we regard such cases as morally uncomplicated. In recent years the number of kidney donations from living unrelated donors has increased. In part this has been due to a growing willingness to accept donation from the spouse of a patient suffering from kidney disease, but there have also been cases of such donations between friends or even, simply, acquaintances. Because the increased willingness to permit such donations is due in part to the pressure for organs and the desire of transplant surgeons to do what they can to meet that need, we must beware of the tyranny of the possible ”the pressure to suppose that we are obligated to do whatever we are able to do. Bioethicists generally worry that unrelated donors might be pressured or paid, or that spouses might feel a kind of pressure that keeps their consent from being truly free. No doubt such concerns are legitimate and are worth our attention. Consent is not the only important moral issue, however, and those worries ought not obscure an even larger underlying issue: the integrity of bodily life. If we learn to regard our bodies simply as collections of organs potentially useful to others, we are in danger of losing any close connection between the person and the body. That connection has always been affirmed in Christian thought, although it has often been a fragile connection. We are regularly tempted to suppose that the “real” person transcends the body, and, when we do, dehumanization lies near at hand. An acute sense of that dehumanizing tendency to regard our bodies as collections of alienable parts moved Leon Kass to refer to organ transplantation as “simply a noble form of cannibalism.” That striking phrase is not overdone as long we take the whole of it seriously. Not just cannibalism, but noble cannibalism. Kass would not have us ignore the nobility involved in gifts of the body, but neither would he have us think too casually about the body’s own integrity and its meaning as the place of personal presence. Because of reservations about organs given by living donors, the tendency in transplantation (since the discovery of drugs to suppress the body’s immune reaction that rejects foreign tissue) has been to use cadaver organs taken immediately after death. (This assumes, of course, that the deceased had, while still living, authorized such donation, or that appropriate family members have done so after his death.) And, of course, from a cadaver one can take for transplant not only a paired organ such as the kidney but unpaired organs such as the heart. Is there any reason not to approve such donations? Is there, in fact, any reason why Christians should not be encouraged to make such gifts of the body? We should note first that here too a certain caution is in order. Given the increasing pressure to make more organs available for transplant, we will see a growing tendency to think of cadaver organs as a communal resource available for the taking”unless perhaps the family of the deceased objects. That tendency ignores the human significance of burial and a family’s desire to take leave of a loved one. William F. May once noted that it is “wrong, indecorous, and enraging” to force a family “to claim the body as its possession , only in order to proceed with rites in the course of which it must acknowledge the process of surrender and separation.” May recalled a tale from the Brothers Grimm in which a young man who is incapable of horror and does not shrink back from the dead attempts even to play with a corpse and is sent away “to learn how to shudder.” If families are often reluctant to authorize organ donation after the death of a loved one, that reluctance ought to be honored”lest we collectively forget how to shudder. Indeed, I do not think it wise even to act upon the deceased person’s previously stated willingness to be a donor in the face of family reluctance or objection. Our society’s desperate attempt to find ways to live longer should not be allowed to override a deep”seated and difficult to articulate sense of the importance of the body, even the dead body.
When cyclosporine, the first powerful immunosuppressive drug, was discovered in 1972, transplantation technology was revolutionized. If the immune system’s rejection of an alien organ could be overcome, the possibilities seemed endless. No longer would transplants be conceivable only if donor and recipient were closely enough related to be a good match. And once donation from strangers became reasonable to contemplate, it also became possible to move beyond living donors’ gifts of paired vital organs (such as a kidney) to transplantation of unpaired vital organs (such as the heart or liver) from cadaver donors. But the crucial conceptual notion here is that of “brain death.” In 1968 an ad hoc committee at Harvard recommended a neurological criterion”cessation of brain activity”for determining death. Prior to that, cessation of heart and lung activity”a cardiopulmonary criterion”had been generally used to mark the point of death. But it had by then become possible to sustain heart and lung activity (with a respirator) for days or even weeks after a patient had irreversibly lost all brain function. Therefore, the two traditional “vital signs” of heart and lung activity could be maintained solely through mechanical assistance. In these circumstances it made sense to many to say that a human being actually dies when brain activity ends, because only that activity makes possible the body’s ability to function as an integrated whole. The Harvard committee attempted simply to fix criteria on the basis of which physicians could determine that a patient was neurologically dead. Its criteria”including lack of responsiveness, no breathing or movement (when off the respirator), no reflexes, and a flat EEG”have been largely accepted and written into law in the years since then. The Harvard criteria were intended to determine when all brain activity had ended, when “whole brain” death had occurred. A person can, of course, suffer the loss of “higher” brain (cortical) function, losing the capacities for awareness or self-consciousness, while brain stem functions (controlling spontaneous breathing, eye-opening, etc.) remain. According to the Harvard criteria, loss of higher brain functions alone did not constitute death, and the laws of our states that have established criteria for determining brain death have had whole brain death in view. We have learned, then, to think of death as a single phenomenon whose presence is indicated either by irreversible loss of heart and lung function (the traditional criterion) or by irreversible loss of all brain function. This is not unreasonable, but the concept of “brain death” remains conceptually and experientially puzzling in some ways. It permits transplant surgeons to retrieve the organs of a neurologically dead person while, because of mechanical assistance, circulation of oxygenated blood sustains the vitality of those organs in the “corpse.” Yet, of course, even if we agreed that irreversible loss of whole brain function established that the person was dead, we would be reluctant to bury a corpse until its heart had ceased to beat. We seem willing, therefore, to remove organs for transplant from a corpse before we would be willing to bury it. The body has died, because it can no longer function as an integrated whole; yet, with mechanical assistance some organs and tissues, taken by themselves, retain vitality. If that makes us uneasy, we might prefer to remove mechanical assistance and let the body die “all the way.” But then, of course, its organs are unlikely to be usable for transplantation. More than a quarter century ago, when this move to “update” criteria for determining death began, it was met with suspicion. At that time the technology of transplant surgery was beginning to make progress, and some people suspected that the desire to establish in law a concept of brain death was motivated only by the wish to obtain organs for transplant before those organs had deteriorated (as they will rapidly when heart and lung activity fail). In truth, however, there were other reasons”apart from the desire for transplantable organs”to rethink the criteria for determining death, since one needed to decide whether a respirator was simply oxygenating a corpse or sustaining a living human being. The suspicions may not have been entirely groundless, however”or, perhaps better, they may have been ahead of their time. For it has become clear in recent years that the thirst for transplantable organs is so strong that we are, in fact, tempted to redefine death in order to secure the “needed” organs. For example, in 1994 the Council on Ethical and Judicial Affairs of the American Medical Association issued an opinion holding that it is “ethically permissible” to use “the anencephalic neonate” as an organ donor, even though, as the Council recognized, under current law anencephalic babies are not dead. Anencephaly is a condition in which an infant is born with a fully or partially functioning brain stem but without any cerebral hemispheres (higher brain). These infants can never have any awareness of their own existence or of the surroundings in which they live, and they usually die within hours or days. With aggressive treatment it may on occasion be possible to sustain their life somewhat longer, but, because they are essentially dying patients, it seems better simply to give them what care and comfort we can while permitting them to die without the bodily intrusiveness of aggressive measures. It is worth noting that as recently as 1988 the AMA’s Council on Ethical and Judicial Affairs had concluded that it was not permissible to remove organs for transplantation from anencephalic infants while they were still alive, even though it is harder to maintain organs in suitable condition if one waits until the infant has sustained whole brain death. The Council’s 1994 opinion is quite frankly based on a sense that it is imperative to acquire organs for transplant.
Newborns and other young children usually can benefit from organ transplants only if the organs are taken from children of similar size. However, there is a serious shortage of pediatric organ donors. As a result, each year approximately five hundred children need heart transplants, another five hundred need liver replacements, and approximately four hundred to five hundred children in the United States need kidney transplants. With the scarcity of hearts, livers, and kidneys available for transplantation, 30 percent to 50 percent of children on the transplant waiting list die while waiting for a suitable organ. These figures are undoubtedly underestimates of the shortage of pediatric organs. With the long waiting lists for the organs, many children in need never make it onto the lists because they would not have high enough priority to receive an organ or because they do not live long enough to have their names entered on the waiting list.For these reasons the Council in 1994 approved what we would ordinarily regard as wrong. Normally, an unpaired vital organ such as the heart could be taken for transplant only from a cadaver donor (who had previously consented or whose family had consented). But within only six years the Council reversed its earlier position and approved such “donations” from anencephalic infants”approved, we should not hesitate to say, taking the life of these infants in order to make their organs available for transplant to other children whose life prospects are better. “Permitting such organ donation,” the Council suggested, “would allow some good to come from a truly tragic situation, sustaining the lives of other children and providing psychological relief for those parents who wish to give meaning to the short life of the anencephalic neonate.” It happens that in December 1995, the AMA’s Council, under considerable pressure from its House of Delegates, once more reversed direction and rescinded its 1994 opinion permitting organ donation from living anencephalic infants. It did so, however, only on the ground that doubt had arisen whether all anencephalic infants lack consciousness and whether an assured diagnosis of anencephaly is always possible. If, therefore, further study demonstrates that these infants do lack consciousness and that their condition can be reliably diagnosed, the Council would have no reason not to change direction one more time and approve the use of living anencephalic infants as organ donors. This is the sort of slippery slope on which we stand if we permit ourselves to believe that ours is the godlike responsibility of bringing good out of every human tragedy. We suppose that ours is the task of giving “meaning” to a child’s life, and we permit ourselves to use the infant’s death as a means of psychological relief for others. Moreover, we will gradually learn to think of ourselves and others not as living beings whose bodies have their own unity and integrity but, in Paul Ramsey’s words, as “ensembles of parts . . . to be given away or taken or”worst of all”sold.” We are on the way to seeing ourselves, in Ramsey’s arresting phrase, as “a useful precadaver.” That I do not exaggerate can be seen from recent discussions about procuring organs for transplant from what are called “non-heart-beating cadavers.” As I noted above, most organs for transplant come today from cadaver donors who have been declared brain dead but whose hearts are still beating because of mechanical assistance. Because the supply of donor organs does not meet demand, however, the search is always on for new sources of organs. At the University of Pittsburgh Medical Center, a major center of transplant surgery, that search has recently focused on non-heart-beating cadaver donors. These are patients who have been declared dead by traditional cardiopulmonary criteria after they or their families have decided to forgo any further treatments. After the decision to forgo further life-sustaining treatment has been made, the still living person is taken to the operating room. There therapy is withdrawn, the patient dies on the operating table, and his organs are removed immediately after death is declared. Objecting to this on a variety of grounds, Renee Fox, a sociologist whose pioneering studies of transplant technology are well known, has singled out as “most dreadful” what she terms “the desolate, profanely high tech’ death that the patient/donor dies, beneath operating room lights, amidst masked, gowned, and gloved strangers, who have prepared [the] body for the eviscerating surgery that will follow.” Perhaps if our noble desire to prolong life leads us to such ignoble means, we need to be sent away to learn how to shudder. Rather than shuddering, it is of course possible to forge boldly ahead. If the Pittsburgh Protocol for obtaining organs seems almost to mock the view that unpaired vital organs should be taken only after the donor has died”to mock it, that is, by adhering to the letter but not the spirit”we might instead simply abandon the claim that it is always necessary to wait for death before procuring organs for transplant. Without recommending it, Robert Arnold and Stuart Youngner describe what this might mean.
Machine-dependent patients could give consent for organ removal before they are dead. For example, a ventilator-dependent ALS patient could request that life support be removed at 5:00 p.m., but that at 9:00 a.m. the same day he be taken to the operating room, put under general anesthesia, and his kidneys, liver, and pancreas removed. Bleeding vessels would be tied off or cauterized. The patient’s heart would not be removed and would continue to beat throughout the surgery, perfusing the other organs with warm, oxygen”and nutrient”rich blood until they were removed. The heart would stop, and the patient would be pronounced dead only after the ventilator was removed at 5:00 p.m., according to plan, and long before the patient could die from renal, hepatic, or pancreatic failure.
If active euthanasia”e.g., lethal injection”and physician-assisted suicide are legally sanctioned, even more patients could couple organ donation with their planned deaths; we would not have to depend only upon persons attached to life support. This practice would yield not only more donors, but more types of organs as well, since the heart could now be removed from dying, not just dead, patients.Arnold and Youngner do not, as I noted, claim that we should turn in this direction, but they view it as an honest projection of where we may gradually be headed. In recent years we have also seen stories of children conceived in order to serve as bone marrow donors for family members. Increasingly, some argue that we should permit the sale and purchase of organs needed for transplant”that, in this way at least, the body may be a commodity for sale. Having set foot on the path of transplantation, we seem unable to find any exit ramp as we press toward a vision of humanity in which everyone becomes “a useful precadaver.” Can our public policy find an exit ramp? Not unless we first recover it for ourselves. The truth is, we will do almost anything to keep ourselves or our loved ones alive. Whatever we may think public policy ought to be, if our own life or our child’s were at stake, we might well bend our entire energies to the task of finding an organ for transplant. Whatever could be done we would be tempted to do, and we are therefore helpless in the face of the relentless advance of this technology. Christians, who know that death is indeed an evil and the last enemy opposed to God’s will for the creation, should find the temptation quite understandable. But we also need to develop the trust and the courage that will enable us sometimes to decline to do what medical technology makes possible. There are circumstances in which we can save life”even our own or that of a loved one”only by destroying the kind of world in which we all should want to live. In learning to say no, in becoming people who give thanks for medical progress but do not worship it or place our trust in it, we may bear a different kind of life-giving witness to our world.
Gilbert Meilaender is Professor of Religion at Oberlin College. His new book, Body, Soul, and Bioethics , has just been published by the University of Notre Dame Press.