The Ethics of Organ Donation

Support for organ donation in this country is, as the clich has it, a mile wide and an inch deep. This is understandable. Most people favor the concept of giving “the gift of life” in the abstract. But when it comes to permitting their own loved ones’ body parts to be “harvested” for transplantation — a decision families must make amid the shock and grief of a death — some shrink from the choice. Moreover, although transplant medicine has been practiced ethically now for many years, a large segment of the population remains wary of the entire enterprise, worrying that people’s organs may be deemed more valuable than their lives should they suffer a catastrophic illness or injury.

This reluctance to donate organs is costing lives. In the 1990s, the number of patients on waiting lists for organs grew five times as fast as the number of transplant operations. As of April 17, 2001, there were 75,863 people waiting to receive organs, while in all of 2000, there were only 22,827 transplant surgeries. More than 5,500 Americans died last year while on waiting lists.

In response, Tommy Thompson, in one of his first policy initiatives as secretary of health and human services, is attempting to encourage organ donations. A cornerstone of the effort will be a public relations campaign called “Workplace Partnership for Life,” helping businesses promote donation among their employees. Another facet of the effort is the creation of a national donor registry, which will enable transplant centers to remove organs from dead persons who are registered donors without waiting for their families’ permission.

This is an important undertaking. But unless Secretary Thompson can shore up the public’s confidence in the entire organ-donation enterprise, all of his good efforts will be for naught.

Public acceptance of organ transplantation rests on what is known as the “dead-donor rule”: the promise that vital, non-paired organs will never be taken from living patients. A necessary adjunct to the dead-donor rule is what I call the “‘do not kill’ corollary” — that is, patients will not be killed for their organs.

This gets us into the issue of defining death. For the last 30 years, the primary criterion used to establish the death of potential organ donors has been neurological — namely, the irreversible cessation of brain function commonly called “brain death.” But there is a growing concern that a person declared brain dead may not really be dead after all. Ironically, assaults on the concept of brain death have come from several usually adversarial perspectives. First, some in the pro-life movement who adhere to the sanctity of life ethic, and some in the African-American community with ugly memories of Tuskegee, believe that brain death is too liberal a standard, causing organs to be procured from patients who are actually still alive. Second, many secular bioethicists, who generally eschew the sanctity of life in favor of “quality of life,” assert that brain death is a subterfuge for killing living patients; but, far from viewing this as anathema, these bioethicists are glad to see confidence in the brain death standard undermined, as they hope to open the door to the removal of vital organs from unquestionably living people.

The primary confusion over brain death arises from the fact that even after death is diagnosed using neurological criteria — after the brain in all its parts has irreversibly ceased functioning as a brain — some body functions can be kept going artificially. Through the application of advanced technology, hearts can be kept beating, lungs can be made to take in oxygen and exhale carbon dioxide, intestines can be caused to digest food and water supplied through a tube, and, in rare cases, wombs have even continued to gestate. Such functions, while they cannot be restored, can be prolonged with the application of respirators and other technical means for days; occasionally even longer than a week. That being so, ask some skeptics, how can the person be dead?

It is important to reiterate, then, that no life exists if the entire brain has ceased functioning. Even the Catholic Church accepts this standard. A person accurately diagnosed as dead using neurological criteria has no brain stem reflexes. His pupils do not dilate or contract even in response to bright light. The gagging response is utterly absent, even when a tube is inserted through the mouth into the pharynx. But for the application of medical technology, he could not breathe. His heart could not beat. Even when the application of technology keeps these functions going, the body almost always begins to decay within days. One prominent neurologist I interviewed compared a brain-dead body to a decapitated body: Even if some of its functions were prolonged by high-tech medical means — even if its heart were artificially kept beating — nobody would argue that a headless body was a living person.

But if the definition of brain death is clear, its application in practice can be problematic. Several prominent neurologists worry that brain death is sometimes inaccurately diagnosed. As Dr. Jeffrey I. Frank told me in 1999, “Most doctors in the role of diagnosing brain death are thoughtful and responsible, but there are also some who aren’t adequately trained, while others don’t fully appreciate the tremendous responsibility placed on us by the public to make sure that when we say someone is dead, they are absolutely dead. I have even been at medical seminars in which some doctors have stated their willingness to declare someone dead because ‘for all practical purposes’ the patient’s life was over and they would soon die anyway.”

“For all practical purposes” isn’t good enough. Sloppy or inaccurate diagnoses of brain death undermine confidence in organ transplantation. Secretary Thompson will need to address this issue forthrightly if he is to succeed in increasing the supply of donated organs. One way he could do so is by creating national brain-death diagnosis protocols binding on all who use the proposed national donor registry. Then people could enter their names in the national organ donor registry confident that their organs would be procured only after they were declared dead under stringent, reliable, and uniform diagnostic guidelines.

The greater long-term threat to the moral health of transplant medicine comes from the attempt by certain influential bioethicists and transplant professionals to evade the dead-donor rule by redefining death to include persistent unconsciousness — a state in which at least part of the brain remains functioning, causing the body to retain reflexes and undergo sleep and wake cycles. Indeed, a persistently unconscious person may be able to breathe on his own and require only feeding and hydration to remain alive. To justify this proposal, they argue that human life in and of itself is not morally meaningful. What matters is reason. Patients deemed incapable of regaining cognition, they argue, should be declared dead so that their organs can be removed.

This drive to redefine death comes from some of the world’s most renowned bioethicists. For example, in 1997, representatives of the International Forum for Transplant Ethics published an article in the British medical journal the Lancet in which they argued:

If the legal definition of death were to be changed to include comprehensive irreversible loss of higher brain function, it would be possible to take the life of a patient (or more accurately to stop the heart, since the patient would be defined as dead) by a ‘lethal’ injection and then remove the organs needed for transplantation, subject to the usual criteria for consent.

Along the same lines, Robert Veatch, a bioethics pioneer now at Georgetown University, has written, “It seems obvious that one should not bury respiring cadavers, but the reason may not be because they are not dead.” Ignoring the difference between a brain-dead body that is artificially kept breathing and a person breathing on his own, Veatch continues, “It is simply unaesthetic to bury someone while still breathing, either mechanically or spontaneously, . . . but this cannot be taken to establish that we believe respiring patients are still alive.” Such thinking is not idiosyncratic. A 1996 survey of neurologists and nursing home medical directors published in the New York Times found that 54 percent of medical directors and 44 percent of neurologists believed that patients diagnosed as persistently unconscious should be “considered dead.”

To make matters worse, the diagnosis of persistent unconsciousness is notoriously unreliable, this neurological condition being easily confused with others such as the “locked in” syndrome, in which the patient is awake and aware but unable to communicate. Moreover, unlike people accurately diagnosed as brain dead, “permanently” unconscious patients sometimes wake up. (If a diagnosis of permanent unconsciousness became synonymous with death, would we say patients who recovered had been resurrected?)

Furthermore, the utilitarian zeal of some bioethicists has led them to urge that terminally ill or disabled patients who are not cognitively impaired, as well as those who die by assisted suicide, be encouraged to donate their organs. Two of the most prominent ethicists in transplant medicine, psychiatrist Stuart Youngner and physician Robert M. Arnold, imagined how a system of organ procurement might accommodate such donors in an article published in 1993 in the influential Kennedy Institute of Ethics Journal:

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 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 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.

Should such science-fiction scenarios ever be permitted in actual medical practice, the number of registered organ donors would drop like a crowbar thrown off a bridge.

To permit death to be transformed from a biological event into a social construct so that cognitively disabled people could be killed for their organs would be to gut the dead-donor rule while maintaining its empty husk for public relations purposes. But no one would be fooled. Rather than rush to make their organs available for transplantation, most people would tear up their donor cards.

A sound organ-donation policy, then, will require Secretary Thompson to support the dead-donor rule and the “do not kill” corollary firmly and publicly. Accordingly, he should send a clarion message to the transplantation and bioethics communities: The dead-donor rule is sacrosanct. Redefining death or procuring vital organs from living people or assisted-suicide victims will never be allowed.

A third potential threat to public confidence in organ donation comes from transplant protocols that are quietly being implemented by the nation’s transplant centers to govern the procurement of organs from certain non-brain-dead patients. The potential for misunderstanding in this area of transplant medicine is explosive.

Consider the public furor that followed the airing in 1997 of a misleading 60 Minutes report that the Cleveland Clinic planned to permit vital organs to be harvested from living patients. Under the proposed “non-heart-beating cadaver” donor protocol, it would have been permissible to plan the deaths of catastrophically brain-injured patients surviving on life support so as to harvest their organs after their demise. The patient/donor would be prepared for surgery, and family members allowed their final goodbyes. Then the patient would be moved into an operating room. After the removal of life support but before death, non-therapeutic drugs would be administered, solely to protect the viability of the organs. If all went as planned, the patient would quickly cease breathing and go into cardiac arrest. Two minutes later, the patient would be declared dead, and organ-removal would begin. If the patient did not stop breathing within an hour, the organ-procurement surgery would be cancelled, and the patient would never again be permitted to be an organ donor.

The Cleveland Clinic never implemented the protocol because of the public furor generated by the 60 Minutes report. But largely unbeknownst to the public, an even more liberal non-heart-beating cadaver donor policy called the Pittsburgh Protocol is already in operation at the University of Pittsburgh Medical Center and in some other organ centers around the country.

The Pittsburgh Protocol has been robustly debated in bioethical and medical journals and in the academy. But this crucial discussion needs to be brought out of the ivory tower and into the public square. Several urgent questions must be settled to the public’s satisfaction: Is a patient whose heart has ceased beating for only two minutes really dead? Is it ethical to inject drugs and perform other invasive interventions without therapeutic value on a dying patient solely to preserve his organs? Do dying patients who are organ donors receive poorer end-of-life care and less-aggressive pain control than other dying patients? Finally, are the Pittsburgh Protocol’s donor eligibility criteria too loose?

This last is an especially sensitive issue. The Pittsburgh Protocol’s eligibility standards permit disabled people who are not terminally ill or catastrophically brain injured to become organ donors if they depend on a ventilator for survival. The protocol thus may unintentionally endanger the lives of depressed, disabled patients who may consider their organs of greater value to the world than their own lives. Diane Coleman, founder of the disability rights organization Not Dead Yet, worries that policies such as the Pittsburgh Protocol could lead to growing pressure on disabled people to “pull the plug.” She says, “Allowing disabled people to believe they are being altruistic by consenting to organ donation will only increase the pressure on disabled people to choose to die in the belief that by giving up their organs their lives can have some meaning. The danger is especially acute for people who are newly disabled, many of whom believe falsely that their lives can never again be worth living.”

According to optimistic estimates, non-heart-beating cadaver organ donations could raise by 40 percent the number of kidneys available for transplant — producing 3,440 extra kidneys per year. If any such goal is to be achieved, however, the public’s confidence in the system will have to be made ironclad. This will require publicly debated, uniform national procurement policies that are based on strict adherence to the sanctity/equality of life ethic and the “do no harm” principle enshrined in the Hippocratic oath. To approach these issues from any other perspective would be to invite what bioethics critics Renee Fox and Nicholas A. Christakis have called the “objectification of the nearly dead or newly dead,” threatening the viability of the entire organ donation system.

Secretary Thompson is right to seek to increase the number of organ donations. But mere boosterism, cheerleading, or business/government partnerships are inadequate to the task. The Department of Health and Human Services must act unequivocally to ensure that a donor’s vital organs can be removed only when the donor is truly dead. And it must work assiduously to assure the general public that organ procurement protocols are ethically sound. Otherwise, the secretary’s effort is doomed to failure.