To treat or not to treat?

[Domestika]

I did not, do not, like this conclusion . . . but the alternative, that otherwise healthy babies that could live to adulthood (admittedly on immunosuppressant drugs) and have children of their own, and love and laugh and cry, would die as infants for lack of those organs . . . which the anencephalic will not live long enough to use.

Since I've put this out, and it is related closely to the threads original topic . . . I guess . . . discuss?

I'm definitely, definitely pro-organ donation. I think it should be the default and that, if there is to be any debate about it, it should be the responsibility of anti-donators to justify their point of view.

That said, I can definitely see how it would be tricky, medically and legally, to declare a brainless baby "brain dead". It's the brainstem that causes the problem... With the brainstem there is some regulation of heartrate, blood pressure, etc. The brainstem makes it "alive", but it's certainly not what I would call human "life".

For me, it really comes back to a debate on what is "life" and what is "personhood". If you call "life", the ability to exist free from machines, to communicate needs and voluntarily respond to stimuli, then these babies do not have "life" and could, theoretically, be considered "dead" from the moment they're born. Of course, I see how problematic that is.

On one hand, it seems that definition is everything. But you can't put a definition on feelings, or what feels "right". You can make it as legal as you want and carve a definition in stone, but a person can still feel that it's wrong, and then where do you go from there? Deny someone's feelings because legally the feelings are wrong or incorrect?

In terms of whether or not it's appropriate to take organs, I think it gets tricky when you start justifying your (in general) opinion by looking at who would be missing out otherwise. I'm not sure that I'm explaining that correctly... Just because someone would benefit from the decision doesn't mean it's the right decision for the individual in question. Sure, other babies would benefit (and that's of course VERY important), but does that mean that their needs should take precedence over the baby who owns those organs?

Of course, I think it's absolutely heartbreaking that so many babies sit on waiting lists and die while someone else's baby is carried to term, dies 3 minutes after birth and is buried with organs they will never use. I'm just trying to play devil's advocate.

 

[Lilavati]

In terms of whether or not it's appropriate to take organs, I think it gets tricky when you start justifying your (in general) opinion by looking at who would be missing out otherwise. I'm not sure that I'm explaining that correctly... Just because someone would benefit from the decision doesn't mean it's the right decision for the individual in question. Sure, other babies would benefit (and that's of course VERY important), but does that mean that their needs should take precedence over the baby who owns those organs?

Of course, I think it's absolutely heartbreaking that so many babies sit on waiting lists and die while someone else's baby is carried to term, dies 3 minutes after birth and is buried with organs they will never use. I'm just trying to play devil's advocate.

Well, and that was why it bothered me so much. Anencephalic babies, no matter how deformed, and how hopeless, are, nonetheless, human babies. I have no personal issue with letting them die, or even aborting them before birth to spare the mother the risk of a late miscarrage, or trauma, or just because she can't stand it. But killing them for their organs (and regardless of the legal definition, we feel it is killing when you actively stop someone from breathing and having a beating heart) sounds perverse. Disguisting. Barbaric. Then there is the slippery slope argument . . . if we can do this to anencephlics, why not microcephalics? Why not hydrocephalics? WHy not any case of severe brain damage? Any case where the baby has a lethal condition and the parents have refused treatment? Where does it stop?

THe arguement to use anencephalics is a utilitarian argument, and like many such arguments, it is dangerous. The justification that it is the best thing because it will help other can be used to justified monstrousities. It has been used to. And the idea of killing a baby to save others definately brings those things to mind . . . its what ethics people call the "ghost of Hitler".

That's why it was hard to come to a conclusion. But the death rate for babies needing transplants is SO high. There are so few organs for them, and many of them, that organ is all they need to live. Anencephalics have no awareness, no hope of survival, no future. Without drastic intervention, they will die in very short order. With drastic intervention, the longest one made it is 2.5 years . . . and she didn't experience a thing during those years. They are, in practical sense, dead, and they were never alive.

What finally made me decide the way I did was the number of parents who chose to carry such a baby to term on the hope that its organs could save another child's life, only to discover that the organs were no good. IT is not the state or the doctors making this call . . . it was the parents, and they wanted to use their personal tragedy to spare others the same pain. Then there are the babies waiting for organs. Innocent babies, otherwise viable, whose parents have already made great sacrifices to keep them alive. The only thing standing between them and real hope is the technical definition of death. As I said, I didn't like the answer. But when I thought about the parents wanting to donate the organs, and the families waiting for them, I couldn't say no. I couldn't say that it is wrong to save those other children at the cost of the somewhat earlier biological death of a baby that knows nothing and never can, and who's condition is incompatable with life. I really dislike brushing ethical nicities aside . . . but in this case . . . the parents want to save those other children, those other children deserve to live if they can, and the anencephalic baby is a hopelss case. I can't say it shouldn't be allowed . . . my conscience does not let me . . . even as it says that using the anencephalic baby that way is wrong as well.

Sometimes there are no neat and tidy answers.

 

[Renee750il]

So, Lil, if I am understanding you correctly, you're simply advocating allowing the parents to make an informed choice. How downright . . . ETHICAL of you

You know, one of these days you may make a great judge.

 

[Fran101]

If it was me, and I decided to go full term and deliver. I would want my babies organs to help save other babies. but I agree, that it should be my choice.

 

[Lilavati]

So, Lil, if I am understanding you correctly, you're simply advocating allowing the parents to make an informed choice. How downright . . . ETHICAL of you

You know, one of these days you may make a great judge.

I'd love to be a judge. Unfortunately, there is a lot of politics involved . . . and I suck at politics.

And yes, that is basically what I advocated. However, there are times when people and parents are not permitted to make informed choices, because people under stress can make very poor choices, even if informed. That's why the slipperly slope here is worrisome.

Its an established point of law, in most states, that parents can refuse treatment for an impaired baby. It has happened that parents have refused treatment for DS babies that have the lethal gut problems that sometimes come with DS. Those gut problems can be corrected with surgery, and the baby will live, but parents sometimes refuse treatment. I leave aside the issue of whether they should, or should be able to . . . that's a whole other long, complicated debate, and is really a question of how far parent rights should be allowed go and when the state should interfere.

However, I would be shocked, and appalled, if those parents made the decision to refuse treatment to a DS baby and were either encouraged to do so by a doctor, or felt they had moral leave to do so, because the baby's organs could be used to save healthy babies. And they might well consent to anesthitizing the baby and having its organs removed under those circumstances. I have no doubt whatsoever that there are people, not even bad people, but people who, distraught at having a DS baby with a serious medical problem, who would be willing, even eager, to do this. The same is true of many impairments more serious than DS, some almost as bad an anencephally. To be sure, you don't have the "just shy of legally dead" justification, but the slope is there. A doctor who tried to set up a problem to use anencephalic babies for donations (not by keeping them on life support while the organs were removed, but by taking them to a central location and carefully planning live support removal, which was not as effective but better) was shocked to get calls from other doctors "I don't have an anencephalic, but would a microcephalic do? I have a hydrocephalic, can I send it over?" I don't think these doctors were bad people, but they were already sliding . . . eager to save lives with hopeless cases. And then . . .what about slightly less hopeless cases? It could keep slipping. That scares the heck out of me . . . that's when Hilter's ghost looks over my shoulder.

So, yes, I came out that if it is the wish of the parents, in the case of anencephlics, it should be offered as an option, with full consent, to harvest the organs while the anencephalic baby is on life support.

But you have to be careful, in my opinion, in cases like this, because sometimes people under stress, disraught people who thought they would have a beautiful, happy baby, can make very bad choices, even if fully informed . . . and may well regret it later. Not to mention what it woudl say about out society if we permitted such things. Do not forget, and I hate raising Hitler's ghost, because it often misused, but do not forget that parents willing took their disabled children to centers to be "humanely" euthanized during the Third Reich because it was "good for society." They were not ordered to do so, only encouraged, told it was good for the Volk. Sometimes they were even turned away, because the child was not impaired enough, even by the Reich's standards, to qualify.

That's why it was a hard decision. Because once you start treating a human being, and anencephalics are that, even if they are not really "people" as a means to an end, as a disposable thing to be used for the greater good, the logic can become infectious. It can spread from a reasonable, even moral and justifiable situation to create monstrousities.

On the other hand, to deny those devistated parents the chance to help, to salvage something (in the case of anencephlics, which really are as bad as it comes) and to save those other children, I told Hilter's ghost to take a hike. Let the parent's decide, and don't let the law interfere. But the line has to be drawn, to avoid the slippery slope, and I would draw it right there. If the baby is born without a brain, yes. Otherwise, in my opinion, it is not ethical for doctors to do this, and it should probably be illegal. With the exception of anencephaly, the presence of brain function should be considered to be a sign of life, and therefore, that organs may not be harvested.

 

[Renee750il]

I completely agree, Lil. Anencephaly is a unique set of circumstances and should be considered in a unique light.