THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Sunday, July 2, 1995 TAG: 9506300449
SECTION: COMMENTARY PAGE: J1 EDITION: FINAL
SOURCE: BY DEBRA GORDON, STAFF WRITER
LENGTH: Long : 207 lines
The news was devastating. The Hampton Roads couple were expecting their first child, and medical tests had shown the fetus had a disorder called ``anencephaly.'' If brought to term, it would be born without part of its head, including most of its brain. It would survive a few hours, or perhaps a few days.
The couple, whose names are being withheld to protect their privacy, were shattered. Their moral and religious beliefs wouldn't allow an abortion. So they faced the prospect of delivering a baby they knew wouldn't survive.
There was one ray of hope.
Maybe, the woman said, she and her husband could at least donate its organs so another baby could live?
But Dr. R. Nathan Slotnick, the obstetrician the couple had consulted, shook his head.
Not allowed, he told them. Under current law, the baby's heart or brain would have to stop first, by which time its organs would have deteriorated beyond use.
For years, Slotnick, director of reproductive genetics at Eastern Virginia Medical School, has thought this law irrational. With more than 1,500 newborns and infants needing heart, liver and kidney transplants in the United States each year, and with the anencephalic baby having no chance of survival, it frustrates him that the organs can't be used.
Now a new position statement from the American Medical Association has reopened debate on the issue. It could lead to a change in laws regarding transplants from anencephalic babies.
In May, the AMA's Council on Ethical and Judicial Affairs said parents of anencephalic newborns should be allowed to donate their children's organs while the children are still clinically alive.
``Permitting such organ donation 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 (baby),'' the Council wrote.
The committee's statement has prompted a fierce ethical debate centering around a fundamental question - what does ``dead'' mean?
Currently, state laws in this country say a person is considered dead when his brain stops working or his heart stops beating. But an anencephalic baby has a functioning brain stem - the part of the nervous system that controls such basic functions as sucking and breathing, and which keeps the heart beating. So the baby is still considered alive and his organs cannot be removed for transplantation.
Without artificial life support, which would only postpone the inevitable death, the anencephalic baby's breathing eventually becomes more labored, with less and less oxygen getting to his organs. By the time the baby dies, his oxygen-deprived tissues have degenerated to the point where they cannot be used for transplantation.
``The law as it stands now is a very poor representation of our understanding of anatomy and embryology,'' Slotnick said. ``Yes, there's a heartbeat, there's some brain-stem function, but a live birth doesn't mean a life.''
These babies have no willed movement - only reflex movement. They can't see, can't hear, have no sense of self. Slotnick compared their functioning to that of an amphibian - ``very, very basic.''
Objections
The moral and ethical objections to anencephalic transplants are complex. They range from concerns about the accuracy of diagnosis to the impact the AMA position statement would have on public trust in the organ-procurement system.
But at their core is the idea that removing organs from an anencephalic baby would be murder.
Under current state laws, organs cannot be harvested for transplant unless the donor is legally dead. This is called the ``dead-donor rule.''
Implementing the AMA's policy, critics say, would undermine the rule. It would lead down a ``slippery slope'' to using organs from other severely damaged people, such as those in a persistent coma or neurologically impaired babies.
It would diminish society's respect for the value of life, critics charge.
``What will be the next step?'' asked Stephen Colecci, special assistant to the bishop of the Roman Catholic Church's Richmond Diocese. ``Harvesting organs from comatose patients? That is a place we cannot afford to go.
``Until a human being is dead, we should never cross that line of treating a human being as a thing to be used.''
``The idea that there is benefit to be gained by exploiting another person is a bad idea,'' said Old Dominion University bioethicist David N. James, who admits he is ``wishy-washy'' about the issue. ``And it's not so clear to many people that what the AMA is saying is anything other than exploitation.''
The AMA says critics are overlooking the special circumstances surrounding anencephaly.
Medical-ethics codes and state laws already treat anencephalic infants differently than other babies, because they allow parents to stop life-sustaining treatment, a decision that isn't permitted with other newborns, said Dr. David Orentlicher, director of the AMA's ethics division.
``It doesn't mean we view them as less than human or not having an essential value, but it is permissible to say we don't give certain people the same aggressive treatment we give others.''
ODU's James concedes that anencephalic infants are different. They will never know their parents or any conscious life, he said.
The AMA ethics committee also counters the ``slippery-slope'' argument by noting that anencephalic babies cannot ``experience pleasure, or pain; they have no thoughts, memories or sensations; and they have no ability to communicate. If their lives are shortened, they lose days of life, but they have no awareness of that loss. If there is a loss, it is a loss for others.''
The committee notes that the slippery-slope argument was used 20 years ago when the very definition of death was changed to include brain death - not just the cessation of heartbeat.
``We can make changes without opening up everything else,'' said the AMA's Orentlicher. ``And it's the same exact reasons (for this decision) that we decided it was OK to take organs from a brain-dead person. It's a true lacking of unconscious activity that brain anencephalics have; there's no conscious activity and they generally die very quickly even with aggressive treatment.''
Critics also raise another issue: the effect of the organ transplantation on the parents.
``They are at a very vulnerable point in their lives,'' Colecchi said. ``They are grieving the loss of their child. They should not be faced with a horrific decision to actively terminate the life of their child.''
But proponents point out that the AMA policy would require that the parents, not medical professionals, initiate the idea of organ donation. And they say one major reason for allowing transplantation is to help parents cope with such a horrible situation.
``It becomes a question: Can there be some meaning gotten out of this terrible event?'' James said. ``So the feelings of the parents are the factor on the other side: They want to get some sense that this was a meaningful experience, that some good came of this short, little life even though the child is never going to have the awareness of having had a life.''
Defining death
University of Virginia bioethicist John Fletcher, who for years has advocated using anencephalic tissues for organ transplants, said one way around the dead-donor rule is to change the definition of brain death.
``I would argue that the anencephalic does not have the infrastructure to become a full human being. It has lost that potential from six weeks of pregnancy,'' he said.
He advocates that the legal definition of death be expanded to include loss of ``higher brain'' function. All that's lacking, he said, is the technology to determine when the upper brain is dead.
Revisiting the issue
The AMA has explored anencephalic transplants before, but two recent cases brought the issue back to its attention.
In 1992, the mother of an anencephalic baby sued to force Fairfax Hospital in Northern Virginia to put her child, Baby K., as the girl became known, on life support and do everything possible to prolong her life. She died in April, one month shy of her third birthday.
Keeping Baby K alive was like ``keeping alive a corpse,'' said one bioethicist in an article in USA Today on Baby K.'s second birthday.
Also in 1992, the parents of another anencephalic baby in Florida sued to force the courts to let them donate their baby's organs while she was still legally alive. Their suit, which made it to the Florida Supreme Court, was denied and the baby died after 10 days on life support.
In 1988, when the AMA's ethics committee had last considered the issue, it had determined anencephalic babies's organs should not be used for transplants.
But times and opinions change, said Orentlicher. ``That's the nature of ethics and philosophy and politics, that over time thinking evolves. And things that seemed inappropriate at one time are viewed as appropriate, such as discontinuing feeding tubes, and things viewed as appropriate, such as segregation, are viewed as inappropriate.''
How would it work?
Typically, anencephalic babies are allowed to die with no attempts at life support.
In Hampton Roads, they aren't sent to the region's highest level neonatal intensive-care unit at Children's Hospital of The King's Daughters because heroic lifesaving measures are of no use, said neonatologist Jamal Khan.
But if anencephalic babies were to have their organs harvested for transplant, the babies would have to be kept alive on a respirator to preserve their heart, kidneys and liver.
Then, when those organs were needed, the baby would be taken into the operating room and the tissues removed.
That would mean that a surgeon would be removing the heart of a child who had not been declared legally dead, by today's definition.
Khan expects some physicians would have difficulty with that concept. Just as some refuse to turn off respirators or deny feeding tubes when a patient is brain dead, some would refuse to remove anencephalic organs until the baby's brain or heart functions had totally ceased.
Laws must change
The ethics committee's statement is now AMA policy, but that doesn't mean anencephalic babies can be used for transplants.
First, state laws would have to change.
Legislators in California tried to amend that state's definition of death in 1986, to allow for the organ harvesting of living anencephalics. The bill, after a heated hearing, died.
Since the ethics committee published its statement in the Journal of the American Medical Association in May, ethicists, parents, physicians and the media have been examining and debating it intensely.
Some large newspapers, such as The Los Angeles Times, have written editorials praising the AMA position; others, such as The Miami Herald, have opposed it.
The discussion is important, Orentlicher said. It mimics the years of debate that preceded the legal change that said loss of brain function constituted death.
``I don't think it's something that will happen overnight; but if we understand the issue more, then it's something the public will eventually come to.'' ILLUSTRATION: SAM HUNDLEY/Staff
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ANENCEPHALY
[For complete graphic, please see microfilm]
KEYWORDS: ANENCEPHALY ORGAN HARVESTING MEDICAL ETHICS by CNB