Death used to be a simple affair: either a person’s heart was beating, or it was not. That clarity faded years ago when heroic medical technology started to keep hearts beating indefinitely. Although we have had decades to ponder the distinctions between various states of grave physiological failure, if anything our confusion has grown. When is it ethical to turn off a ventilator or remove a feeding tube? When does “life support” lose its meaning? And most critically, at what point is it acceptable to cut into a body and remove the heart that could save another life?
These issues are not academic. They raise questions about health care costs—is it worth using expensive machinery on a body that is for all intents and purposes dead?—as well as about dignity in end-of-life care. This year’s “death panel” subplot of the health care debate fed off the real fears people have about being taken advantage of when at their weakest.
But more than anything else, what drives bioethicists’ efforts to arrive at precise definitions of death is organ donation. Currently more than 100,000 people in the U.S. are waiting for organs that could save their lives. Every year some 7,000 will die waiting. The question of when death comes is urgent. The sooner an organ can be removed, the less time it spends without oxygen and the greater the chance of a successful transplantation. This has led medical practitioners to push for extracting organs as soon as ethically possible, a push that has forced some surgeons into morally treacherous waters.
In 2008 San Francisco transplant surgeon Hootan Roozrokh faced felony criminal charges (not including murder) for hastening the death of a potential liver donor. (He was acquitted.) Only months later a team of pediatric surgeons in Denver came under fire for transplanting the hearts of three brain-damaged newborns less than two minutes after their hearts stopped beating—an interval their critics said might have been too short to ensure the hearts would not spontaneously start beating once again. The act violated decades-old medical protocols designed to ensure that organs would never be harvested from the living. In their dispatch, the surgeons cut to the essence of the debate over death and organ transplantion: At what point is it acceptable to declare one life over to save another?
To help resolve this moral dilemma, doctors and ethicists have had to do a little dance for the past 40 years, defining death in a way that makes organ donation possible yet morally defensible. In doing so, they have invented such confusing and slightly ghoulish terminology as “brain-dead” and “heart-beating cadaver.” They have also set up a system that may lead to a new socially acceptable cause of death, one that would allow doctors to cut into grievously injured patients while they are still alive to retrieve their organs. Some would call it death by organ donation.
in the 1960s, when organ transplantation became feasible and was poised to transform medicine, bioethicists wanted to make sure that transplant surgeons did not go too far in their zeal to save lives. They insisted on the “dead-donor rule,” which says that organs can be taken only from donors who have been declared dead. But in the contemporary hospital, when is a donor dead, exactly? Just breathing and having a pulse aren’t necessarily the same thing as being “alive”; advanced medical technology can make breath and heartbeat happen in almost anyone. If death is defined the way it has been for eons, as the cessation of circulatory and respiratory function, what do you call a patient who is, for instance, attached to a ventilator?
To address this issue, a blue-ribbon Harvard Medical School panel met in 1968 and arrived at the concept of “irreversible coma,” more commonly known as brain death. By this term, they meant that the cerebral cortex—the seat of consciousness, language, empathy, fear and everything else that makes us human—is irreversibly destroyed. Destroyed, too, is the brain stem, which orchestrates such basic physiological functions as breathing, heartbeat and homeostasis. Modern medical machinery may keep the body oxygenated, but the person inside is gone.
The definition of death has been reviewed periodically since then by groups of bioethicists, and although the terminology sometimes changes, the substance remains basically the same. The concept of brain death (often known by the more modern and clinical term “the neurological standard of death”) has since become encoded into law in nearly every state in the U.S. Ethicists and the law agree: a person whose cortex and brain stem are destroyed has ceased to be alive, even if the body is warm and pink. That body is no longer considered a person. Instead it is a heart-beating cadaver.
This set of circumstances is perfect for a transplant surgeon. Organs begin to deteriorate from lack of oxygen within minutes of the cessation of heartbeat and respiration, so transplant surgeons want to begin the process of retrieval as close to the moment of death as possible. With the neurological standard, this moment can be choreographed. Removal from the ventilator can be timed to coincide with the arrival of a surgical team that will take organs from the body. Indeed, the people who meet the neurological definition of death make up at least 85 percent of the donor pool for vital organ transplants.
As for that last 15 percent? Herein lies the gray area. These people’s brains might be permanently injured, but they still have activity in the brain stem, which means they are not brain-dead. They must be declared dead the old-fashioned way—when they stop breathing and their hearts stop beating. With the advent of modern medical technology, pinpointing this moment is often much less straightforward than it sounds.
the machinery for one of these transplants starts whirring when, say, a potential organ donor suffers a massive stroke that destroys all higher brain functioning, as happened in the case involving Hootan Roozrokh. Or it begins when a baby is born with profound brain damage caused by anencephaly or when, as in the Denver hospital, birth complications deprive the brain of oxygen for too many crucial minutes. People in such situations will surely die, once life support is taken away, but if they die in a way that preserves their hearts, lungs or livers, many other lives would be saved. There’s the rub: the organs cannot be removed until the patients die on their own. Yet death, if it happens too slowly, could destroy those very organs.
In preparation for transplant, the doctor removes the patient from life support, cutting off the circulatory and respiratory machinery that keeps organs oxygenated. Eventually the heart stops beating altogether, but this does not occur instantly. If it takes more than an hour for the heart to stop, the transplant procedure is abandoned; by that time, oxygen-depleted organs have become too damaged to use. If it takes less than an hour, the second step begins: the surgeon waits a few more minutes after the heart stops—long enough to give the heart a chance to restart spontaneously if it is going to—before retrieving the organs. No heart has ever “autoresuscitated” after more than two minutes, so by a consensus known as the Pittsburgh Protocol, transplant surgeons wait at least 120 seconds after the last beat before removing organs.
What must go through the mind of a transplant surgeon during these two minutes? With each tick of the second hand, the organs are decaying, making a successful transplant that much less likely and endangering the chances of saving another life. The deadline is somewhat arbitrary—a compromise reached by committee.
Pediatric transplant surgeons David Campbell and Biagio Pietra of Denver’s Children’s Hospital found themselves in situations such as this during three cases between 2004 and 2007. In each case, an infant at the hospital suffered from a severe congenital heart defect. Surgeons had previously attempted to fix the tiny hearts but were not successful. It was clear that without a transplant, each of the children would not live long.
The surgeons found potential donors for the children—newborns with severe brain damage resulting from birth apnea and healthy, beating hearts. These newborns were going to die. The only question was whether they would be able to save another life. The surgeons pulled the plug and waited, but they did not wait the full 120 seconds—in two cases, they acted only 75 seconds after the heart’s final beat.
As the surgeons later wrote in the New England Journal of Medicine, they were acting on the advice of the hospital’s ethical review board, who thought that the surgeons were ethically bound to violate the Pittsburgh Protocol for the sake of the three babies who needed the heart transplants.
The NEJM editors, recognizing how controversial this article would be, convened a roundtable discussion about whether the Denver doctors had behaved ethically. They had, said Robert D. Truog, a Harvard physician and bioethicist, but he insisted that the trouble was not with the surgeons’ behavior but with the dead-donor rule itself. He argued that it should be abandoned, because it serves only as a smoke screen, one that allows us to argue about superficial minutiae such as the number of seconds that must pass before surgeons can begin transplantation. Only two questions matter: Is the person so gravely injured that recovery is impossible, and has the family consented to organ donation? If the answer is yes on both counts, then there is no ethical difference between death by removal of life support and death by removal of organs.
Another roundtable participant, bioethicist Arthur L. Caplan of the University of Pennsylvania [see “Life Designed to Order”], recoiled at Truog’s suggestion, mostly because of how it would be interpreted by an already skittish lay public. “We ought not underestimate public unease,” he said. “Making people wonder if you’re going to cut corners on their care in order to salvage organs from them is a very dangerous area to be in.”
Doing away with the dead-donor rule would be fraught with political and ethical hazards. Truog insists that safeguards would still make it ethical to retrieve organs—specifically, doctors must be absolutely certain that death is both inevitable and imminent, and there must be iron-clad assurance that the patient or legal surrogate has been fully informed before consenting. But it is hard to say whether these protections would be adequate. Such a move would lead to “moral and legal chaos,” wrote Edmund D. Pellegrino of Georgetown University, chair of the President’s Council on Bioethics, in the council’s 2008 report Controversies in the Determination of Death. Following Truog’s suggestion, he wrote, would conflate the ethics of organ donation with such end-of-life controversies as assisted suicide and the removal of life support from patients in long-term comas.
If the medical establishment ever does scrap the dead-donor rule, and death by organ retrieval became an acceptable standard, there would be a shift in the delicate balance of declaring death versus harvesting organs—but just how it would shift is anyone’s guess. It is safe to say that as long as safeguards were rigorously applied, no one would be turned into an organ donor who might otherwise have had a chance of recovery. Beyond that, anything is possible. In one scenario, a big proportion of the 7,000 people who die every year waiting for a transplant would be saved because more organs, in better condition, would be available. In another, significantly more would die, with organs becoming scarce as people hesitate to sign donor cards for fear of having their bodies ripped open before they are completely dead.
It is this uncertainty about trade-offs, about exchanging one person’s life for another’s, that makes defining death in the 21st century so complicated. If all that the definition of death told us was when to stop heroic measures and when to start grieving, that would be one thing. With organ donation hovering in the wings, the question is more charged. The definition of death becomes a matter of giving one diminishing life the possibility of a second chance—by defining another diminishing life as already and irreparably over.