When are you dead?
Resurgent form of organ transplantation raises a new question
The young man had fallen off a cliff while hiking. Now he was in a coma. His doctors in Stanford’s intensive care unit determined that he had suffered massive, irreversible brain damage and would never make a meaningful recovery. His parents, who knew their son would not have wanted to remain in the zombie-like limbo afforded by a mechanical ventilator, decided to withdraw life support. They also wanted to donate his organs.
“It was an incredibly altruistic gesture in the midst of a tragedy,” recalls Carlos Esquivel, MD, PhD, chief of Stanford’s Transplantation Division, of the seven-year-old case.
But Esquivel also recognized that organ donation helps many parents cope with their grief over the loss of a child. So he was upset when David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, arrived at the scene to inform the transplant team that the procedure could not go forward. “It was just the thought that we couldn’t fulfill the parents’ wishes,” Esquivel says.
Magnus, who is occasionally summoned to the hospital to advise doctors on end-of-life issues, including the advisability of organ donation, recalls the scene as “very tense.” At the time, Stanford permitted the removal of organs only from voluntary living donors — a mother donating a kidney to her daughter, for example — and from non-living donors whose deaths were based on the loss of all brain function. But this young man’s brain stem was still active, albeit barely, so donation was not an option.
A little more than 40 years ago, a partially functioning brain would not have gotten in the way of organ donation; irreversible cardiopulmonary failure was still the only standard for determining death. But during the 1970s, that began to change, and by the early 1980s, the cessation of all brain activity — brain death — had become a widely accepted standard. In the transplant community, brain death was attractive for one particular reason: The bodies of such donors could remain on respirators to keep their organs healthy, even during much of the organ-removal surgery.
Today, the medical establishment, facing a huge shortage of organs, needs new sources for transplantation. One solution has been a return to procuring organs from patients who die of heart failure. Before dying, these patients are likely to have been in a coma, sustained by a ventilator, with very minimal brain function — a hopeless distance from what we mean by consciousness. Still, many people, including some physicians, consider this type of organ donation, known as “donation after cardiac death” or DCD, as akin to murder.
Critics of DCD contend that some patients may still be alive five or even 10 minutes after cardiac arrest because, theoretically, their hearts could be restarted, and some of their brain function might still remain. In such cases, critics assert, the patients were clearly not dead because their condition was reversible. Advocates of DCD counter that do-not-resuscitate orders from a patient or family render the argument about irreversibility moot.
In any case, there would be little debate about DCD if organs in a body remained viable for transplantation 20 or 30 minutes after heart and lung failure. But they become damaged quickly, so surgeons have to act fast — ideally, within about 10 minutes of cardiac arrest.
According to the Uniform Determination of Death Act, which was drafted about 30 years ago and has since been adopted, in some form, by all of the states, you can be declared dead in one of two ways: Your brain can irreversibly cease functioning, or your heart and lungs can irreversibly stop working. “Irreversibly,” in this context, has fueled the controversy. Does it mean the heart is unable to spontaneously start by itself? Or does it mean that even resuscitation efforts fail to restart the heart?
To be certain that a heart does not have the capacity to start beating again on its own, most organ procurement organizations, including the California Donor Transplant Network, require that doctors observe patients for five minutes after cardiac arrest before declaring death and admitting the transplant team into the operating room. (Five minutes is the amount of time recommended by the Institute of Medicine, even though under typical end-of-life conditions no adult heart is known to have started beating again by itself two minutes after stopping.)
Ironically, not long before the injured hiker arrived at Stanford Hospital, Magnus had proposed creating a policy that would allow DCDs here. Magnus, who earned his doctorate in philosophy from Stanford in 1989, recognized that without a protocol, donation after cardiac death was fraught with ethical pitfalls.
In the end, that patient became brain dead, so he was allowed to be a donor. Several months later, the hospital’s board of directors approved the DCD protocol, which Magnus, Esquivel and other Stanford physicians helped craft. Nevertheless, Magnus is confident it was right to forgo DCD in that case.
“There’s no doubt Carlos was frustrated, but I think we eventually won him over,” Magnus says. “It was never a good idea to let a transplant team go in half-cocked, without a protocol.”
Indeed, as both would soon discover, half-cocked DCD efforts can end in criminal charges. But we’re getting ahead of the story.
More than 100,000 potential organ recipients idle on the waiting list maintained by the United Network for Organ Sharing, which manages the U.S. transplant system. An average of 18 people on the list die each day because of a shortage of donor organs. Meanwhile, demand for organs continues to grow, but the pool of brain-dead donors remains largely static, thanks in part to better automobile-safety measures, such as seat belt laws and air bags, as well as advances in treating neurological trauma.
DCD has gained popularity over the past two decades as a way of increasing the pool of potential donors. In 1995, only 1 percent of dead donors nationwide were DCD donors. That figure increased to almost 11 percent in 2008, according to the Scientific Registry of Transplant Recipients. The significant increase is probably due to greater awareness of DCD among members of the medical profession, as well as the procedure’s official sanction in the intervening years by influential medical organizations, including The Joint Commission and the Institute of Medicine.
‘In order to be dead enough to bury but alive enough to be a donor, you must be irreversibly brain dead.’
Yet some hospitals, including several dozen in Northern California — Dominican Hospital in Santa Cruz, Saint Francis Memorial Hospital in San Francisco, Sequoia Hospital in Redwood City, for example — refuse to act as a venue for DCD. And despite the success seven years ago of the first DCD procurement at Stanford, one respiratory therapist involved in the case refused to participate, citing ethical concerns.
David Crippen, MD, a critical care specialist at the University of Pittsburgh Medical Center, probably would have understood this kind of reaction. Crippen, who has written about end-of-life issues in ICUs, has been critical of how death is defined in the practice of DCD. He argues that whole-brain death is the only clear standard; it is based on the widely accepted definition of death as the irreversible cessation of the integrated functioning of an organism, in which the brain, as chief executive of the nervous system, is the key integrator.
In a 2008 article in the journal Critical Care Medicine, he faulted the “unfortunately vague” guidelines of the Uniform Determination of Death Act for opening the door to what he describes as the “creative interpretation” of death. The problem, as Crippen sees it, is that no one in 1980, when the act was formulated, was thinking about how “irreversible” cardiopulmonary failure would be interpreted in light of DCD.
“In order to be dead enough to bury but alive enough to be a donor, you must be irreversibly brain dead,” Crippen says in a telephone interview. “If it’s reversible, you’re no longer dead; you’re a patient. And once you start messing around with this definition, you’re on a slippery slope, and the question then becomes: How dead do you want patients to be before you start taking their organs?”
Crippen acknowledges the rising demand for organs and the importance of transplantation in saving lives. But, in the article, he argues “history has shown that where there are rules, there are usually reasons.” He continues: “The passionate and highly publicized desire for organs promotes utilitarian workarounds of the rules to obtain these organs.”
Magnus, a cautious advocate of the procedure, notes that even though the term DCD did not always exist, it was the de facto method of procuring transplant organs from dead donors until the 1970s. The notion of brain death did not even exist until about 1960 and, in the United States, was not formally recommended as an alternative method of determining death until 1968.
“DCD can be done ethically,” Magnus says, but must follow a strict protocol. Stanford’s protocol, which took effect in 2004, resembles most other hospitals’ in its basic outline.
First, the patient’s family must decide to withdraw life support. To avoid the appearance of conflict of interest, the physician caring for the patient must not propose or discuss the possibility of organ transplantation with the family. If family members want to talk about it, the physician must refer them to the California Donor Transplant Network.
Then a team of doctors must assess whether the patient would make a suitable DCD donor. If yes, Stanford Hospital’s Ethics Committee must submit its approval, and a representative of the donor network must explain the process to the family, including the fact that, prior to withdrawal of life support, doctors inject the patient with heparin, a blood thinner crucial to the health of organs removed for transplantation.
The patient is then wheeled into the operating room, given some heparin and detached from the respirator. If the patient’s heart does not stop beating within about an hour, he is brought back to the ICU to die; his organs, which would likely be damaged because of the decreased amount of oxygen they’re getting from the ebbing heartbeat, will not be viable for transplant. But if the patient’s heart stops for five minutes, the attending physician declares the patient dead and asks family members to leave the room. Then the transplant team enters to procure the organs.
“We have a very stringent protocol and a robust informed consent process,” Magnus says. “If we didn’t, that could be asking for trouble.”
Ruben Navarro was 9 when he was diagnosed with adrenoleukodystrophy. The rare wasting disease, the focus of the 1992 film Lorenzo’s Oil, damages the nerves and eventually leads to death. There is no cure. In late January of 2006, two weeks before his 26th birthday, Navarro was found unconscious at the assisted-care home where he lived in San Luis Obispo, Calif. The disease had ravaged his mental and physical health; he weighed only 80 pounds. He was rushed to nearby Sierra Vista Regional Medical Center and hooked up to a ventilator. Doctors determined that he had suffered irreversible brain damage. His mother, Rosa Navarro, agreed to allow his organs to be donated once life support was withdrawn.
On Feb. 3, the California Donor Transplant Network dispatched a San Francisco-based team to the hospital. It included Hootan Roozrokh, MD, a young surgeon who several months before had completed a transplant fellowship at Stanford School of Medicine and was now on the staff of Kaiser Permanente, and a senior surgeon, Arturo Martinez, MD, then-director of Kaiser’s kidney transplant program for Northern California. When they arrived at Sierra Vista, Navarro was wheeled into the operating room. But there was confusion among members of the hospital and transplant teams about their various roles, court records show. Sierra Vista had no DCD protocol, and no staff at the medical center had any training in the procedure, according to the records. In any case, after life support was withdrawn, Navarro remained alive for about eight hours, making his organs unsuitable for transplant.
One-and-a-half years later, Roozrokh found himself facing three felony charges. San Luis Obispo prosecutors accused him of prescribing large quantities of a painkiller and sedative in an effort to hasten Navarro’s death. (State law prohibits transplant surgeons from directing the treatment of potential organ donors until they have been declared dead.) During the trial, the defense argued that hospital staff members had failed to perform their duties and that Roozrokh stepped in only to try to relieve the patient’s suffering. Navarro had developed a tolerance to the drugs, which he had used to manage pain caused by his neurological disease, and so needed a relatively large dose to get any relief, Roozrokh’s lawyer said.
The judge in the case threw out two of the charges — administering harmful substances and prescribing controlled substances without a legitimate medical purpose — and the jury found Roozrokh innocent on the remaining charge: dependent adult abuse. In rendering its verdict, the jury included a note advising that the case “identified that donation after cardiac death is in desperate need of further identification of prescribed policy in order to continue successfully as a viable option for organ donation in this country.”
Roozrokh, now a transplant surgeon at Loma Linda University Medical Center, vows he will never go near a DCD case again. He says there should be a national DCD protocol and liability protection for physicians who perform the procedure in good faith. “It was a terrible ordeal for my family, and the cost of my defense was enormous,” he says.
Roozrokh, who has received a number of humanitarian awards, speaking invitations and professional awards, including the 2010 Northern California Kaiser Permanente Patients Recognition Award for Outstanding Service, says his reputation nevertheless has suffered because of the accusations. “Just Google me,” he says. “As a doctor, your reputation is pretty much all you’ve got.”
To Magnus, the Navarro case serves as a cautionary tale, and the jury’s note is the moral. The need for a protocol is especially important in DCD, Magnus says, because “there is no bright line” indicating the moment a person becomes a corpse. Magnus drew the analogy to how we define adulthood as beginning at 18. “We know that’s not how human development works — that at 17 years and 364 days you’re immature and the next day you’re magically a mature adult,” he says. “But we need that distinction for policy reasons. The same thing goes for death.”
For all the controversy around DCD, however, it has not been the panacea many donor advocates thought it would be, Magnus says. Stanford Hospital considers about one potential DCD donor a month. Over the past seven years, only three have actually made it as far as surgery, and only two of these successfully provided organs — kidneys in both cases.
“It’s a rare occurrence,” Magnus says. “The hope that UNOS [United Network for Organ Sharing] initially had was this might make up as much as 30 percent of all successfully recovered cadaveric organ donations.” While DCD was used for some 11 percent of dead donors in 2008, it accounted for only 7 percent of organs recovered from dead donors. (A DCD donor usually provides fewer organs than does a brain-dead donor.)
There is no ‘bright line’ indicating the moment a person becomes a corpse.
One reason DCD procurements haven’t risen more is that the majority of transplant centers will accept DCD organs only from donors who are middle-aged or younger — and, on occasion, the vigorous 60-year-old who runs marathons. This is because the organs must be healthy enough to withstand the dying heart’s decreasing blood flow, followed by a complete lack of oxygen for several minutes after cardiac arrest. (In almost all cases, hearts cannot be recovered in DCD procedures because they suffer too much damage during this process.) Then the organs must survive in a cold solution, which helps slow their deterioration, for at least several hours, but often much longer. Brain-dead patients, on the other hand, can be donors into their 80s: They remain on a heart-lung machine during most of the surgery, giving their organs all the oxygen-rich blood they need.
Another reason for the low numbers of potential DCD donors is simply that fewer young people die — because they are, well, young. And when a young person dies, family members may have trouble coming to grips with the loss and so neglect or scorn end-of-life considerations, such as organ donation. That’s unfortunate not only for potential recipients but for the family of the deceased, says Nikole Neidlinger, MD, the medical director of the California Donor Transplant Network.
“A lot of people think that it’s all about the organ recipient, but really, I think, the donors’ families get the biggest benefit,” Neidlinger says. “They have spent perhaps weeks dealing with the hardship of seeing loved ones on life support and coming to terms with their death. And the fact that the donor gets a chance to help another person live — it’s a legacy that counts so much for families.”
In 2005, the day after Thanksgiving, Pierre Bobet Erhard, 25, dined on leftover turkey and stuffing with his mother, Nancy Erhard, at her home in Stoneham, Mass. Bo, as everyone called him, had led a troubled adolescence. In seventh grade, he was arrested several times for minor delinquencies, such as vandalism, shoplifting and marijuana possession. He was expelled from school. “Bo had no sense of safety, but he was a likable, funny kid,” Nancy says. “He was like Robin Williams.” With the support of his family, Bo turned his life around. He graduated from high school and became a plumber.
After dinner, he said goodbye to his mom and drove to a house he shared with two friends in Billerica, a town along the Concord River, about 22 miles northwest of Boston. They had recently moved in together and were throwing a housewarming party. Around midnight, Bo was in his room, talking with some friends, when he collapsed and stopped breathing — suddenly and for no apparent reason, witnesses said. An ambulance rushed him to the hospital.
“When I got to the emergency room, it was practically empty, except for Bo,” Nancy says. “He was in a bed, intubated, with the guardrail down. He was completely motionless. I felt this sense of doom.”
Doctors said a tear on the inside wall of his carotid artery had caused a massive stroke. He had suffered severe brain damage and was breathing only with the help of a ventilator. Nancy asked a resident in neurology whether he had treated patients in this condition, and the resident said that he had, many times. She asked if any of these patients had survived. “No one,” the resident replied, and looked at the floor.
“I need to speak to the organ bank,” she said.
Several days later, as Nancy waited for doctors to remove Bo from life support so he could become a DCD donor, she recalled a conversation she once had with him in his late teens: “We were driving in the car, and I told him, ‘You have had more help than everyone else in town put together, and someday you have to give back.’ And he turned to me with a big smile and said, ‘Don’t worry, Ma. Someday I will.’
“The chances of families saying yes to DCD are about 50-50,” continues Nancy, who since her son’s death has volunteered for the New England Organ Bank. “More and more people are doing it, though, because more and more people realize the kind of gift it is. I know what Bo would have said about this situation. He would have said, ‘Mom, do some good.’”
Stanford U Medicine