Case: Angela and Bruce discovered from Angela’s high serum alpha-fetoprotein level that their child had a neural tube defect. Ultrasound confirmed a case of anencephaly. Three months later, baby Katherine beat the odds and was born alive, though with severe brain defects. She responded to external stimuli but had no sense of hunger, pain, or discomfort. She had an uncoordinated suck/swallow reflex that made breathing difficult when Angela tried to feed her.
The physician expected baby Katherine to die within hours or days. In the wake of their infant’s poor prognosis, the parents’ only wish was for her organs to be donated to another infant in need.
Background: The law states that organs can only be removed from a patient who is declared to be brain dead. For adult patients, a “brain dead” state is an irreversible absence of brain activity. “Brain dead” adults can be placed on a ventilator for their vital organs to remain well-conditioned until they are surgically removed. Anencephalic infants who survive birth currently do not meet the “brain dead” criteria, though they undoubtedly have an irreversible and deteriorating condition. As their brainstem slowly loses its primitive function, so do their organs, until the heart stops. While initially in good condition, their organs are generally not accepted for donation at the time “brain death” is declared.
Questions: Should Angela and Bruce have the authority to demand “premature” extraction of their infant’s organs? In this case, should an “absence” or severe underdevelopment of a brain be considered “brain death?”
The law is there for a reason, and a good reason, I'd say. Allowing this baby's organs to be harvested before she goes braindead will be like opening a can of worms.
ReplyDeleteThis baby's brain is severely underdeveloped. Where do we draw the line for "sufficient" brain development? Why couldn't we then harvest the organs of severely mentally retarded infants?
What if women with folate deficiencies or genetic diseases associated with mental retardation started having babies with underdeveloped brains so that they could sell their organs? We've all heard of organ trafficking.
This is a slippery slope. Rather than challenging the law, I would spend my time figuring out how to reduce the occurrence of neural tube defects.
I don't believe that the baby's organs should be taken out prematurely. This baby still has a brain that's still functioning, no matter how small it is. She still has primitive brain function and that's good enough not to be called brain dead.
ReplyDeleteEven with all animals- they all have the same, or very similar, organization of the brain- they may not have huge amounts of cortical matter, but they do have a primitive brain stem, and they can still function and are alive.
Even though the parents will eventually loose this child due to the deterioration of the brain and brain stem, I believe this child is consciously living for the time being, still having brain stem function + any amount of cortical thinking.
"Believe" should not be a part of the case. The most beneficial piece of society that brain dead child could do is donate organs. There is no chance this "child" (brainless thing) could do anything better and more useful. Keeping it alive is just a drain on the system and drives cost up for everyone else.
ReplyDeleteYou can challenge any potential change in policy by invoking the "slippery slope" argument. This is not an adequate reason to prohibit something unless you can show that the risk is real. Here's why its not: anencephalic infants are very different from other disabled persons (such as brain-damaged people or those with dementia) in that they have NEVER had consciousness or the possibility of being conscious. People with dementia who are now attached to a ventilator or infants with other disabilities who have some degree of consciousness could be said to have a vested interest in remaining alive. Anencephalic infants are incapable of having this interest, so arguments in favor of protecting the anencephalic's right to "live" are not valid. There is an acute shortage of pediatric organs for transplant. While taking them from anencephalic infants at parental request will not save everyone, there is the potential to at least donate kidneys, heart, liver, which could be lifesaving for another child. If you were the parent of an anencephalic child, wouldn't you want to know that your child's life saved the lives of 3 or 4 other children? The idea that women with folate deficiencies or genetic diseases would attempt to have anencephalic babies in order to traffic their organs is laughable. As we all know, its not a sure thing that everyone with a folate deficiency will have an anencephalic baby.
ReplyDeleteLaws are, indeed, present for a reason; that we may defy them! J slash K. But seriously, if it’s slippery slopes we’re worrying ourselves over, here’s one to consider: laws are created by man in an attempt to codify the rules of morality and ethics. We presume that unprovoked killing of our fellow humans would be unethical regardless of what the law of our nation stated to the contrary. It is an important function of citizens of a nation to challenge laws that were made in times of haste or uncertainty, that we may alter them so our laws can better approximate the actual nature of morality and ethics. So if we say “Let us do naught, that we may avoid angering the gods of Law”, i believe this could become a slippery slope that could lead to an over-authoritarian government. Of course, the flaw in this is: not wanting to oppose this one particularly troublesome law is unlikely to lead to a dictatorship. But then again, being willing to bend the rules a bit in an honest attempt to benefit the greatest number of people is also unlikely to lead to mass human organ trafficking.
ReplyDeleteTo consider:
ReplyDeletesubstituted judgment
“best interest” of patient
utilitarianism
deontology
Many patients who are unable to make decisions for themselves, whether temporarily (anesthesia, severe illness, being a young child) or permanently (mental retardation, dementia patients) have medical decisions made for them by an approved guardian. Medical decisions for neonates are routinely made by their parents. Of course, parents can’t decide to do just anything; physicians can’t give a lethal injection to a child just because the parents say so. The idea is that when there are many treatment options in any given neonatal situation, if none of the options is clearly and absolutely the “best” option, the parents should be able to decide among the options as long as what they decide is in the “best interest” of the patient.
Now, in this scenario, it is difficult to say what is in the best interest of the patient. Evidently the patient does not feel any pain or discomfort; there are two ways to feel about this. One: since there is no pain or discomfort (and also no joy or pleasure, as the patient has not and will not ever achieve consciousness), nothing we do to the patient can be considered malevolent. Thus, harvesting organs does not violate any ethical principal. Two: because the patient is not uncomfortable, and life has value in and of itself, we should not deprive the patient of life any earlier than it will naturally occur. Allowing the patient to die naturally is also not malevolent, because the patient will not suffer the sting of death.
Other points to consider are the ideals of utilitarianism and deontology. Utilitarians would likely argue that the patient’s organs MUST be harvested, because this could benefit many patients without doing any harm to the anencephalic patient. This would have the greatest utility with no real cost.
Deontologists (i.e., Kantians) would likely argue that no person should ever be treated as a means to an end only. (We shall ignore for now the question of whether anencephalics are persons, though one must wonder whether an entity without consciousness or possibility of future consciousness should be considered the moral equivalent of a person [cows, for example, are more sentient than anencephalics, and undoubtedly suffer at the hands of humans, yet most of us have few qualms about killing cows for utilitarian purposes]). The point to consider here is whether harvesting organs from an anencephalic is using the anencephalic as a means to an end ONLY. If that patient were conscious, would she wish for her organs to be donated to help others? If so, harvesting her organs would do honour to her, as well as serve a utilitarian benefit. We cannot know what she would want, but we do know what the parents want, and we could (quite arrogantly) presume that the patient would have similar beliefs and desires to her parents.
An issue not yet resolved is the residual emotions that affect Angela and Bruce. For 9 stomach aching months, Angela bore baby Katherine with the expectation of raising her with Bruce. My assumption is that the couple had high hopes for their baby to grow old and take part in this beautiful and sometimes tragic world. Then...a haze.
ReplyDelete...
Bruce, how do we cope? What do we do?
...
One of the few ways to honor baby Katherine and keep her spirit alive is to share her organs with other neonates so they can achieve their modest dreams. Now Angela and Bruce can turn darkness into light for others while achieving closure.
In all likelihood Angela and Bruce knew well before baby Katherine was born that she would be anencephalic. Even without amniocentesis or CVS this anomaly is very easy to detect on ultrasound and based on Angela's blood levels of AFP. They have been living with the knowledge that they were bringing a child with no chance of survival into the world, and may already have started grieving for her before she was born.
ReplyDeleteFetal loss is something we will all have to deal with at sometime in our careers/lives. Recent statistics indicate that 15-20% of pregnancies end in miscarriage. The reasons for each are of course dependent on the stage of development of the fetus. 1st trimester- primarily genetic abnormalities not compatible with life. Many of these women never even know they are pregnant. Later in the pregnancy it is more likely due to maldevelopment, a cord accident, or a maternal coagulopathy. Whatever the reason, each couple will process it differently.
It is very important to reassure the parents that it is not their fault (which it usually is not) and to help them find and modify anything that can be changed for a better outcome in a future pregnancy. In this case, we may want to urge Angela to take folic acid supplements for the rest of her childbearing years. But remember: neural tube defects can happen in the absence of a folic acid deficit in the mother, so even though we know that lack of folic acid can lead to this anomaly, we cannot assume that this is why it happened in Katherine's case, and it certainly does not make it Angela's fault.
Everyone grieves differently. Support groups and counseling help. There are a huge number of support groups out there, including blogs by parents of children with all manner of birth defects. Encourage your patients to seek out others who have been in the same situation. Losing a child can be very isolating.
Finally, please remember that this is a couple's problem. Society seems to have an expectation that the woman will be the one who is truly hurt and upset in these situations- that it won't or shouldn't touch the man as deeply. This couldn't be further from the truth. Bruce is going to have just as hard a time coping with this, and there may be conflict between the couple as they sort out their different feelings about it. After all, even though they are a couple, they experienced the pregnancy as individuals and will experience their grief over their child's death differently, which again, can be somewhat isolating.
Even though the baby is not conscious that does not make it right to end the baby's life so you can harvest its organs. Although I agree that organ donation would be one of the best things that could come out of this baby’s life and it would bring some closure for the parents, you cannot use this as an excuse for killing a living human. There are very clear laws for kids about declaring brain death. At least 2 brain death exams must be done a certain number of hrs. apart (either 12 or 8 I can’t remember). It may vary a bit based on your state.
ReplyDeleteFor those would not consider this killing let me remind you that killing means doing something to end a life and if you go back to 5th grade biology something is considered living if it is able to metabolize, grow and reproduce all things which this baby in its current state is doing or potentially able to do (yes I know she hasn't gone through puberty but she has a normal uterus and ovaries and therefore has potential to reproduce).
The team caring for the infant can help support the organ function while waiting to declare brain death if that is what the family wants. (Ex Ng tube feeds or TPN/IVF) Even though born alive her brain death will likely take place rather quickly (not such a big drain on society as some may be thinking) and there is something to be said for giving the family that closure of spending some time with their baby letting them hold her and take a few pictures etc. I can tell you from experience that most families benefit greatly from having that time. Even though the family wants the organs donated there are very few moms that could look at their baby breathing on its own and say yes kill my baby to take its organs. I think you will find there are some but not a lot of practicing physicians (especially in pediatrics) who would be willing to say this as well.
There are organ donation teams that come and evaluate potential pediatric donors. I think you will find very few teams if any that are willing to take organs before brain death is declared. Some teams will not even evaluate until the brain death exams have been done. In this case they may be willing to talk with the parents and evaluate sooner given the special circumstances. Practically speaking the infant may not even be able to donate any of its organs. There are certain size and weight restrictions for harvesting organs making the evaluation of the donation team a critical part of this process. Yes, smaller organs are needed for children but in some cases the preference is to transplant a slightly larger organ into a child as transplanted organs do not always grow in size well as the child grows. I have been surprised in the past how strict the criteria for donation can be and how few organs they may be able to use from seemingly good donors.
Ideally in real life you would discuss the issues with the parents and then the specifics of the infant’s condition with the donation team and find out if they even can harvest any organs and then involve your hospital's ethics committee. Of course keeping the family informed and involved throughout the process and providing any support to the infant that is required until the decisions can be made.....I would not be surprised if the infant would actually meet brain death criteria by the time the hospital ethics committee could give you a decision.