Jade-Evon Simard
Ever since technology has become a daily part of our lives, we have been faced with dilemmas that we have not previously had to deal with. Computers changed the business world, cellular phones have transformed communication, and medical ventilation and organ transplantation have forever altered the limits of human life. Laws and guidelines have been established for organ donation, yet there are many conflicts that need to be solved. One of the conflicts is the fact that if a person has signed a donor card and consented, their immediate family still must approve before the donation can take place (Schafer A1). The issue that will be discussed in this paper is the consideration of anencephalic newborns as organ donors, as long as the parents are willing.
As of May 13, 1998 there were 59,121 patients on the UNOS national waiting list for organs needed for transplants (Department of Health and Human Services). On average, fifty-five people each day receive an organ transplant, while another ten people on the waiting list die because not enough organs are available. Organs cannot be removed from the donor’s body until he/she is pronounced “brain dead.” The problem is that the concept of “brain death” remains incoherent in theory and confused in practice to such a degree that only 35 percent of physicians and nurses who are likely to be involved in organ procurement for transplantation correctly identified the legal and medical criteria for determining death. (Truog 33) This confusion leaves patients whom are willing to become donors, unable to donate, while the gap between donors and recipients is widening drastically.
The law as it stands now, prohibits organs to be removed from a living person, yet once a person is pronounced “dead” and the body shuts down, many of the needed organs are no longer usable for transplantation. A proposed exception to this rule includes anencephalic infants. Victims of anencephaly exist on a hazy borderline between life and death, and therefore cannot be declared brain dead. The child possesses no upper-brain, and is unconscious. Their brain stem continues to function, maintaining breathing and a heartbeat for it’s brief life. The infant will live only a few hours until it stops breathing, or the heart stops, at which point the organs are no longer usable for others (Goldberg 132). The American Medical Association’s Council on Ethical and Judicial Affairs recently proposed (and had subsequently retracted) this statement,
“It is ethically permissible to consider the anencephalic as a potential organ donor, although still alive under the current definition of death. It is normally required that the donor be legally dead before removal of their life-necessary organs. The use of the anencephalic neonate as a live donor is a limited exception to the general standard because of the fact that the infant has never experienced, and will never experience consciousness.” (Truog 38)
The statement was retracted six months after it was originally issued because of an unresolved debate of whether or not the anencephalic infant was truly unconscious and whether or not it could feel pain. The feelings that people have towards this also had a large impact on its current restrictions. The general public and many medical staff feel torn. “It was disconcerting for nurses to be treating one neonate in one crib, hoping, praying, working to help the baby live, and go to the next crib and treat an anencephalic infant who was part of the protocol, with the hope that the infant would die,” recalled Jim Walters Ph.D., a medical ethicist at Loma Linda (Goldberg 137). In 1989 the experiment was stopped. Donations of organs from anencephalic babies are no longer accepted at the infant transplant center.
The cause of anencephaly is not known. Researchers are struggling to become closer to solving the question. Disturbing clusters of anencephalic births in Texas in 1995, showed them that toxins in the environment might play a role in the defects of the central nervous system. The researchers also found that daily doses of 0.4 milligrams of folic acid decrease the condition by 70 percent (Goldberg 137).
Many experts believe that using the organs of anencephalic infants could mean up to an additional 300 transplants a year. Anencephaly is approximated to occur in about 2,500 infants each year.(Truog 36) “It’s not going to save a million lives,” says David Orenlicher, M.D., a doctor and lawyer who wrote the statement for the American Medical Association. “Even if it’s only 20 lives, 20 children who can live a long, productive life is very valuable,” (Goldberg 134). There have not been any other successful transplants using organs from anencephalic donors since Paul Holc’s dramatic surgery in 1987. Paul Holc received the heart of an anencephalic infant, where as without it he would have died within weeks, the victim of a lethal heart defect. He is now an active 10 year-old in British Columbia.
The main purpose served by the concept of brain death is to facilitate the procurement of transplantable organs. Brain death occurs when a person has a catastrophic, irreversible brain injury, which causes all brain activity to stop permanently (Hoffenberg 1320-3). It is impossible to return life after brain death. Currently, many professionals in the medical world are attempting to re-define brain death, so that it coincides better with the tests that decide the state of the patient’s brain activity. There is an estimated 10,000-25,000 adults and 4,000- 10,000 children in “permanent vegetative state” in our country alone (Hoffenberg 1320). The officials are attempting to establish new tests that would determine if these individuals are alive or dead by the activity still present in their brains. A persons brain activity, or lack there of is determined by three levels, according to neurologist James Bernat. At the most general level, the concept of brain death must involve a definition. Next, criteria must be specified to determine when the definition has been fulfilled. Finally, tests must be available for evaluating that the criteria has been satisfied. There are two distinct tests accepted as determining whether or not that criteria is fulfilled, 1) the cardiorespiratory standard and 2) the neurological standard. The cardiorespiratory standard relies on documenting the pro-longed absence of circulation or respiration. The neurological standard consists of tests and procedures, including loss of all brain activity, presence of coma, absence of brainstem reflexes, excluding reversible conditions. These tests have exceptions. Some patients who satisfy these tests- which could cause them to be pronounced as brain dead, actually have some electrical activity in their brain. These same patients, after being pronounced brain dead, have responded to surgical incision, while doctors began the procedure to remove their organs with a slight raise in blood pressure, and heart rate. The determination of “whole brain death” is only an approximation.
The legal problem with allowing anencephalic infants to become organ donors is that they are alive and deserve a chance at life, although it will be a dramatically short one. “As soon as you start taking organs from someone who isn’t dead, just because they happen to be about to die of a terminal condition, you have a real Pandora’s box,” warns UCLA professor of pediatric neurology, Alan Shewmon M.D. (Truog 34). Fears are preventing this from taking place. Some fear that when organs are donated from patients that are not dead, when they become a donor they will not be saved. Others fear that they will not be “dead” when their organs are removed. Some worry of a “slippery slope” that could be generated because of this, for example that organs would be harvested from coma victims or other children with severe, but non-fatal brain defects. Some are even worried that if this becomes common procedure, that some doctors would misdiagnose patients just so that the organs would be accessible to others. This hesitation was ruled on by the Task Force on Anencephaly, which concluded that most cases of anencephaly could be diagnosed by competent clinicians without significant uncertainty (Hoffenberg 1322). Medical officials are worried that if this becomes a regularly practiced procedure then fewer people will become donors and more organs will be lost than gained overall. Arthur Caplan, Ph.D., a director of the Center of Bioethics at the University of Pennsylvania says; “If people think you’re trying to kill retarded babies or cut corners in defining death, you’re likely to lose more organs overall than you will gain by getting a few from these anencephalic babies.”(Goldberg 136) “Anencephaly is not an exciting new source of organs, it’s a horrible tragedy,” comments Rosalyn Berne, a mother of an anencephalic infant, “Instead of saying we have 200 more organs, I’d rather say we don’t have any anencephalic births in this country.”
When Rosalyn Berne and her husband found out that their unborn child had anencephaly, they wanted some good to come of their tragedy. This reaction is common among parents in similar situations. They, like many other parents do, started calling around to hospitals, trying to find someplace that would accept their baby’s organs. After hundreds of phone calls they realized that no one would accept them. They were told that taking the organs before brain death would be illegal and that they should put it behind them and have another baby. Brenda Winner, also the mother of an anencephalic baby, felt betrayed and angry. “They could offer me an abortion at six months, but donating the baby’s heart was unheard of,” she says. Brenda and her husband decided that “it sounded cruel to let them take her heart and have that be the means of her death. But it sounded even more cruel to allow our baby to suffocate and have her good heart beat itself to death,” (Goldberg 136).
This approach, however alternative to present standards of organ donation it may be, would require significant changes in the law. It would, in uncertain terms, have to justify killing, rather than just the dissection of a corpse. There are already precedents in the law that give exception and justify killing, such as euthanasia, which is becoming more accepted in the eyes of the public. Many hospitals that were open to doing the procedure, stopped considering it because of “right-to-life” groups and because the situation is so fraught with controversy. Currently only one hospital in the United States (the University of Miami Organ Procurement Organization), and one in Canada (London Health Sciences Center/ Children’s Hospital in Ontario) will accept anencephalic infants as potential donors. The hospitals do so under extremely restricted conditions, such as only qualifying them if the baby is declared dead within minutes of birth. So far, none have met this standard (Truog 37).
There are no simple answers in this issue of organ donation. There probably will never be just one answer. Society today has several controversial sides that it must deal with. Many of these issues were never encountered before the era of mechanical ventilation and organ transplantation. To begin to solve these dilemmas, we must determine in black and white terms what we know death to be. We must decide if death will be determined as the cessation of respiration and circulation, or if it is neurological dysfunction-brain death. We need to determine if the body defines who the person is, or if it is the soul - the spirit of the person does. After we decide what the borders of death are, we should decide whether or not we want to define brain death-or do away with the concept all together. There are few exceptions that would make such an impact in others lives, as the ability for parents of anencephalic newborns to donate the organs of the children who are unable to survive. Should anencephalic newborns be considered to be brain dead- since there is no brain and they will never experience consciousness? There are so many perspectives on this issue, so many ways to view it, so a decision needs to be made.
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