…and this is a 
In which I agree with the Jehovah's Witnesses…for different reasons
Category: Ethics • Reproduction
Posted on: March 12, 2008 3:50 PM, by PZ Myers
Usually, when I read one of these common stories about people denying themselves reasonable medical care for religious reasons (such as the Jehovah Witness's proscription against blood transfusions, or the Christian Scientist's insane denial of illness altogether), I find myself siding with the doctor trying to overcome their foolishness, rather than the deluded theists. This one is an exception.
To make it short, a Jehovah's Witness couple are expecting twins; one of the twins has a circulation defect that prevents pulmonary circulation, meaning it would suffocate to death as soon as it was born and needed to breathe air; they refuse any surgery to correct the problem; doctor gets a court order, operates at birth against the parent's wishes, and saves the infant.
I think the doctor was way out of line. This is a case in which the parents were fully aware of the situation and knew that the fetus would die at birth, and elected (for screwy reasons, admittedly) to not pursue extraordinary measures to save its life. They had not deluded themselves into believing medical intervention was unnecessary and that magic would heal the child, they had resigned themselves to its death. And until the child has enough self-awareness to actually want to live, I think that is a decision parents have to be allowed to make. If they want that particular baby, they should be allowed to elect to have major surgery, but if they don't, they should be permitted to allow its condition to run its course, unless the outcome is likely to be survival with serious damage.
The cost of these medical interventions can be prohibitive, and it can be entirely reasonable to decide not to invest money and time into a fetus who has neither autonomy nor unique qualities, nor an individual personality to which the parents have attached their affection. Let them die. Let the parents decide, not a doctor.
The article cites a particularly horrendous case.
In 1990, for example, a woman named Karla Miller went into premature labor at 23 weeks of gestation in Houston. Because a child born that early has a 75 percent chance of death or severe disability, the husband chose not to sign a consent form that would allow resuscitation. But the neonatologist resuscitated the girl, who grew up severely retarded, legally blind, and quadriplegic. The parents sued the hospital for ignoring their wishes, but in 2000 the Texas Supreme Court ruled for the hospital. George Annas, a medical ethicist at Boston University, later attacked the decision in the New England Journal of Medicine, since "the court implies that life is always preferable to death for a newborn . . . no matter how unlikely their survival is without severe disabilities."
I wonder if that neonatologist has since taken responsibility for the round-the-clock care and various expenses and stresses of that kind of affliction?
Comments
"And until the child has enough self-awareness to actually want to live, I think that is a decision parents have to be allowed to make."
When does that level of self-awareness set in? And how do we know?
Posted by: SirEdwardCoke | March 12, 2008 3:58 PM
We don't know, and there is going to be no hard, sharp line defining the transition. But a doctor's medical training (or a priest's training in superstition) gives him no qualifications to make the judgment call, any better than the parents. Let the people with the responsibility decide.
Posted by: PZ Myers | March 12, 2008 4:03 PM
When you get a child who will, in all likelyhood, be either dead or handicaped to a level where it is unable to function, then who are the doctors, or anyone for that matter, to tell the parent that they have to get the child and nurse it for the rest of their lives?
The emotional and financial cost of nursing such a person is enormous, not just to the parents, but to any siblings or future children whose parent will struggle to provide for their crippled child. The parent who choose to take on this enormous burden are to be commended for their compassion, love, courage and sacrifice, but noone should ever be forced to take on that burden. Unless the state is prepared to fully provide for the unborn, handicapped child, then it should mind its own goddamn business.
If we democratically decide that no child should ever die when it could live, no matter how slim the chances of survival or how high the cost, then the state should be obliged adopt the child and pay all expenses if the parents refuse to have it.
Posted by: Tomas | March 12, 2008 4:11 PM
Posted by: allonym | March 12, 2008 4:15 PM
Hopefully, as the child grows up, the parents will think back to the reason this child is alive in the first place (because the doctor ignored their religion-based wishes). Hopefully, they will love the child so much, realize that they can't imagine living without them, and they will begin to question their religion that would deprive them of this child.
(Admittedly, many religious people would deal with this situation post-hoc by claiming that the doctor was doing God's will in this particular case; allowing them to avoid raising doubts about their religion.)
Posted by: tinyfrog | March 12, 2008 4:20 PM
, but then one might conclude that the child is the one with the most vested interest (in living)
If the child is capable of having vested interests that argument might work. But it wasn't. So, just as parents decide everything else.....
Posted by: Brian English | March 12, 2008 4:20 PM
But we generally agree that parents, doctors, and the State in general have a duty of care towards infants, even though they are incapable of having vested interests themselves. If not, infanticide would be legal.
Posted by: Tulse | March 12, 2008 4:23 PM
When does that level of self-awareness set in?
(looks around, sighs)
Sometimes, never.
Posted by: Graculus | March 12, 2008 4:24 PM
While I agree that overriding the parents' wishes in cases where the child will be severely disabled is reprehensible, that is NOT the case with the twin in the featured article. His condition was entirely correctable, and he is, according to this account, a normal, healthy child, post-surgery. To me this makes a difference, but what makes more of a difference is the actions of the parents throughout this decision making process. They appear to have been ambivalent, at best, about the prospect of the surgery. It was not the surgery itself that they objected to, in fact, but only that it would necessitate a blood transfusion. They are depicted as hopeful--HOPEFUL--that some loophole could be found.
A physician friend of mine has related stories of JW's standing 'round the bedsides of their ill and injured family members, wringing their hands and saying in loud clear voices "Gosh I sure hope this hospital doesn't get a court order to do the procedure on dear old Dad here. I really really really hope that doesn't happen to the patient down here in room 203!" and the like. The article suggests that this was exactly the case here--lip service was paid to this stupid religious tenet, an end-run play was called, everyone went home happy. The parents, therefore don't strike me as having made any sort of decision, other than to leave the door open for the decision to be made for them. They seem delighted that such a solution was found, as they now have two healthy babies and no one in the family--neither parent nor child--has done anything 'wrong' in the eyes of their church. Not so out of line, IMO.
Posted by: DanioPhD | March 12, 2008 4:31 PM
My stepsister was such a child... her parents were not JW's, but she was born extremely premature. The doctors realized that if they could "save" her, she would be a record-breaking preemie and terrifically good press for them. So, in order to sidestep her parents' strident objections, they went to court and had custody vested in the hospital somehow. The hospital promised to pay all of the costs of the "lifesaving" procedures, and apparently did so. However, their interventions left the child permanently blind, partly deaf, and profoundly retarded. She might have been retarded, they said, but it was the experiments that took her sight and hearing. Is "experiments" too strong a word? We don't think so. If the baby died, we think the hospital would have considered it unfortunate that they didn't make their precious record-breaking "save." Anyway, the responsibility for the upbringing of a severely damaged daughter was transferred back to the parents when the hospital was quite finished.
Posted by: speedwell | March 12, 2008 4:32 PM
This is a question of choice. The parent has the right to choose. I wonder, if we lived in country where pro-life laws were mandated, would the pro-lifers be so quick to save the child in this situation? You can't have it both ways.
Posted by: Scott Little | March 12, 2008 4:34 PM
The problem, I think, is that if the parents have made a decision for stupid reasons then in real terms they haven't made a decision at all: they've deferred the decision to arbitrary superstition. I'd rather a doctor took that decision any day. I think he was out of line too, but I think he was between a rock and a hard place and I don't know that the opposite decision would have been any better.
I worry that this argument may lead to "these people shouldn't be allowed to have children".
Posted by: Andrew | March 12, 2008 4:37 PM
PZ, I actually disagree with you on this. The parents decided that base don *their* religion, they had to right to refuse care to an already-born child, one who, if properly treated, would have no long-term repercussions. Only if the medical consequences of treatment were severe would the parents have a right to choose, on their infant's behalf, to forego them.
Parents have to make most of the early choices for their children. The children can't make them on their own. But this does not give parents carte-blanche; it means instead that they must treat the children's interests as their own. The parents in question did so, to the extent that their religious views clouded their judgment. When this happens, the state is right to step in.
There is obviously a fuzzy line. If the parents wanted to refuse treatment that would merely prolong the life of a child for a short time, while increasing the pain the suffering the child had to go through, we would find that acceptable. If they wanted to refuse treatment that will leave the child with no long-term disabilities of any kind, allowing him or her to grow up healthy, we should not find it acceptable. It is grotesque, and it raises the parents' (religious) self-interest far above the interests of the child.
Posted by: Jane E. Valentine | March 12, 2008 4:39 PM
I thought the intent here in this context was "legal responsibility," since parents usually have such responsibilities. I don't know if that's right, but that's how I took the original comment.
A newborn has an "interest in living?" A newborn is sentient, granted -- but I wouldn't start injecting complex interests to a newborn. The interests of a dog are more complex than the interests of a newborn.
Posted by: Bob | March 12, 2008 4:43 PM
Not the sole right once the child is born. Parents are generally required by law to provide appropriate medical care to their children, including newborns. In this case, appropriate medical care appears to have been a relatively well-understood surgery with excellent prognosis. It was opposed because such surgery violated the parents' religious beliefs.
I really don't see how PZ can come down on their side in this case. This is not about "saving" a child who will have poor quality of life -- it is about doing a relatively standard procedure that will let the child live a normal life. And that procedure was opposed because the parents didn't want their baby to get a blood transfusion. How is that rational?
Posted by: Tulse | March 12, 2008 4:45 PM
Bob - we are talking about legal interests here, not the ones you list on your online dating profile. The interest of any healthy (or fixably healthy) newborn is to continue life, provided it is of sufficient quality. Otherwise anyone could kill their newborn children with no repercussions.
The "of sufficient quality" is where so many of these cases get tricky, however, in this particular case the indications were clear: the child should have been treated.
PZ - how closely did you read the article? The parents essentially agreed to the treatment under the condition that the "sin" be on the heads of others. So they wanted their child to have the surgery; they just wanted somebody else to be *technically* responsible for the decision.
Posted by: Jane E. Valentine | March 12, 2008 4:51 PM
Many such situations are unique with variables making a decision one way or the other seem the better. Without knowing the drawbacks to the procedure the doctor performed on the newborn, I find myself incapable of judging the actions. If the procedure would give the child a normal, healthy life, then I can't say I can condemn the doctor in this instance. If the situation is such that the child simply survives and is severely handicapped, then that would change my opinion.
Posted by: BK | March 12, 2008 4:51 PM
that child is going to have an awwwwwwkward conversation with his/her parents later in life
Posted by: mlf | March 12, 2008 4:51 PM
PZ, you have hit a topic of great interest to me. This clearly places the point of individual rights after birth. Would you agree that parents can choose to end the life of a newly born baby with no clear medical ills. Isn't this the same situation at root?
I am fascinated by the choice of boundry you are placing on when an individual gains rights as an individual.
I would agree that in questionable medical situations the parents should have a strong position?
Posted by: George | March 12, 2008 4:54 PM
It's so tricky. I mean, it's not the same as abortion. In this case the kid was born. It had a chance to live if it had a surgery after birth. In this case it was an independant being, it's not as if they performed a still-in-womb surgery. I think parents do not have the right to refuse a life-changing surgery for their children the second they come out of there. And they don't say that the kid had any permanent damage afterwards (Or at least none that forbid a normal life?)
The second case is far more tricky. It's life with serious deficiencies... I think the father made the right choice and the doctors spat on it. If we can refuse to allow ressusitation for our parents... why for a child that will suffer?
Posted by: Michelle | March 12, 2008 4:59 PM
I disagree, PZ. I think the parents were monsters for refusing a medical procedure that could save their infant's life. The doctor was completely in the right in this case.
Posted by: Matt | March 12, 2008 5:05 PM
Posted by: allonym | March 12, 2008 5:13 PM
"And until the child has enough self-awareness to actually want to live, I think that is a decision parents have to be allowed to make."
I completely disagree. I don't think a one year old has the "self-awareness to want to live". However, if the child falls ill, parents shouldn't have the choice to with-hold treatment if such a choice would result in the child's death.
You also refer to the child as a fetus. And that the "fetus" would die "at birth". However, the article states, "But shortly after birth, when the umbilical cord is cut, the newborn would suffocate and die."
We aren't talking about an abortion here.
Posted by: Deepsix | March 12, 2008 5:13 PM
I sort of see the case as similar to abortion. And the way I see it, the parents/mother should be able to relinquish any claim to the child and have it removed from her body. But they/she shouldn't be able to directly condemn it death. If the Dr/Hospital/State/Adopting-parent wants to pay for the surgery to keep the child alive, more power too them. But they shouldn't be able to compel the parents to pay for the surgery. In CA, you can drop an infant off at a hospital, police or fire station, no questions asked...why would this be any different?
Posted by: Robert Thille | March 12, 2008 5:21 PM
@#23:
We're certainly not. This is made quite clear by the fact that the child survived, outside the womb, for the entire time it took for all representatives and interested parties to gather, conduct their legal proceedings, make the decision, assemble the surgical team, etc. There were, it seems, effective and permissible (according to the Watchtower) means with which to sustain the life of the child temporarily while the decision was being made. I think it would have been extremely unethical to have taken the child off whatever support treatment was used during this interim period and allow him to die when a proven medical treatment was available that could restore normal cardiopulmonary function with no long term disability.
Posted by: DanioPhD | March 12, 2008 5:22 PM
I do not concede a human right to life automatically on individuals that merely have a genetic connection to human beings — and that means I think there is a legitimate argument for a humane form of infanticide. (Yes, I know -- a lot of people gasp in horror at the very idea.) There is no bright clear line between unaware and aware, dependent and autonomous, and birth itself does not represent a magic boundary; there's a lot of blurry shades of gray in there, and fair arguments can be made on either side.
Even a one year old might not be out of the gray area yet (although, personally, having known several one year olds, I'd give them the benefit of the doubt.) Remember, there was a time when parents might take a few months before getting around to naming a baby, because the infant mortality rate was so high that they were careful not to get attached until they were old enough that there was some surety of survival. I think we concede too much when we simply bestow the privilege of personhood on any incompletely differentiated blob with 46 chromosomes.
Posted by: PZ Myers | March 12, 2008 5:27 PM
I disagree.
There's no way to tell the future of a human being.
Suppose, that you knew that Stephen Hawking is going to suffer from amyotrophic lateral sclerosis before his birth. Would you advocate aborting the pregnancy?
Probably, you would. And the world would have lost the brilliant scientist in this case.
Posted by: Alex Besogonov | March 12, 2008 5:32 PM
"We don't know, and there is going to be no hard, sharp line defining the transition. But a doctor's medical training (or a priest's training in superstition) gives him no qualifications to make the judgment call, any better than the parents. Let the people with the responsibility decide."
This begs the question. First you imply that the parent's right to decide ends when the child has sufficient self-awareness to want to live but then you seem to say that there's no way to say when that happens and neither doctors nor priests are qualified to make a judgment that the right has ever ended. There's a helluva(n) argument that a five day old full-term infant has no such awareness, and your reasoning would then justify infanticide. I'm sure you didn't mean that, but I don't see how a doctor or prosecutor could decide when it is or isn't based on your formulation.
Posted by: SirEdwardCoke | March 12, 2008 5:35 PM
You must be out of your brilliant mind.
Posted by: Gregory Earl | March 12, 2008 5:45 PM
Count me as another dissent here. If the child doesn't have legit interests of its own, why can't parents just kill any infant? This reasoning makes them into mere property until they've crossed some imaginary line. I can see this if, like the other quoted story, their will be a severe mental impairment that will keep them from ever being a valid actor, but otherwise the line is way too difficult to draw.
Posted by: Ace of Sevens | March 12, 2008 5:48 PM
"I disagree, PZ. I think the parents were monsters for refusing a medical procedure that could save their infant's life. The doctor was completely in the right in this case."
I think this is an odd position to take. The motives of the parents could be any number of things that they choose hide behind the guise of their religion. By concluding that the parents choice is automatically wrong and that they are "monsters" for making that choice is silly. You are simply placing your personal ideologies and emotions into the case and concluding that the parents are somehow evil or heartless.
One thing about the case is certain, when that kid hits 13 he's gonna be one pissed off teen.
Posted by: Andrew | March 12, 2008 5:50 PM
"Probably, you would. And the world would have lost the brilliant scientist in this case."
and suppose we aborted Hitler......
Posted by: spurge | March 12, 2008 5:51 PM
"There's no way to tell the future of a human being.
Suppose, that you knew that Stephen Hawking is going to suffer from amyotrophic lateral sclerosis before his birth. Would you advocate aborting the pregnancy?
Probably, you would. And the world would have lost the brilliant scientist in this case."
If only the world could run off Post Hoc.
Posted by: Andrew | March 12, 2008 5:53 PM
Sorry SirEdwardCoke I can't resist...
http://begthequestion.info/
I can't help it. It's my pet peeve. Carry on.
Posted by: OsakaGuy | March 12, 2008 5:54 PM
PZ has spelled out an example of infanticide earlier, but I don't have the link at the moment.
I would say that at what point that we give someone/something rights is basically arbitrary. We decide it based on our culture/religion/personal feelings etc etc.
Basically, I agree with this part of PZ's point: "There is no bright clear line between unaware and aware, dependent and autonomous, and birth itself does not represent a magic boundary; there's a lot of blurry shades of gray in there, and fair arguments can be made on either side."
I would be curious to see what Wilkins' take would be.
Posted by: BGT | March 12, 2008 5:56 PM
Oops, I'm an idiot with a stupid itchy trigger finger. Please accept my apologies. *creeps away*
Posted by: OsakaGuy | March 12, 2008 5:56 PM
Which makes it a lot like abortion. Keeping the child could cause great implications, whether it be the health of the child, the lives of the parents, or even their wallets.
Actually, it was less radical than abortion; this was simply a matter of letting nature take its course.
Still, someone should invent a Fetus Mindreading Device so we can determine the fetus' opinion on things like this.
"Doctor, this woman is considering having an abortion. Shall I get the FMD?"
Now that would make for interesting news.
Posted by: robhoofd | March 12, 2008 5:59 PM
nothing like polluting the gene pool with defective genes.
Posted by: genesgalore | March 12, 2008 6:23 PM
I don't want to shoot myself in the foot here, but I'll open up that this is the perspective of a liberal pro-lifer...
The first case is different than the second. The first case only simply required a medical procedure in order to (presumably) live a perfectly normal life. No extraordinary measures had to be taken, and there was a great survival (with a normal life no less) rate. Would this situation be any different than a 3 year old? It is born, which for *most* pro-choicers is where personhood begins, where their legal right to life begins. The second case though is similar to a DNR in that it takes extraordinary measures that were against the parent's wishes-and these apply throughout the time span too. When children are dying from a disease, sometimes it is best to let them go naturally, and there is nothing wrong with that. The claim that "at least it's alive" is erroneous. There is a time to live and a time to die, whoever says that keeping the person alive is ALWAYS better than a natural death is absolutely mistaken. If extraordinary measures were outside of the parent's wishes the court has very little room to intervene. I would ask for a different ethics board if I lived in that area.
Posted by: prettyinpink | March 12, 2008 6:40 PM
Agreed. But that wasn't my point.
Well I'm not sure where the legal precedent is for this claim. (I'm not saying it's nowhere; I just don't remember coming across such a thing in the way you state.)
But, aside from this, the argument that "it needs to have an interest, else we would be able to kill it" is simply not valid. The absence of an interest doesn't mean that we can do whatever we want to it. (And the presence of an interest doesn't necessarily mean it overrides.) There might be other, more compelling reasons for doing, or not doing, something to it -- but not because it happens to be, or not to be, in its interest. We clearly have this view when it comes to artworks or the environment.
Don't take any of this to be claiming that I disagree with your conclusion in #13. On the contrary, I actually think you're right, and that PZ's wrong on this. I just have a problem with the inferences.
Posted by: Bob | March 12, 2008 6:48 PM
a) The parents could choose to abort both twins at an earlier stage and this would be ok.
b) One was going to die naturally and it's decided to stop this happening.
c) Euthanasia is not allowed.
B&C prevent natural death, whereas A prevents natural birth.
Dignity should be a human right. The parents should have the dignity of being able to choose to follow a natural birth* just as a human should have the right to a dignified death.
(* admittedly the JW reasons were whacko, but that's beside the point)
Hence, PZ is right, although for secular ethical reasons, rather than the boundary-line reasons.
Posted by: Wrought | March 12, 2008 7:03 PM
http://www.cnn.com/2008/HEALTH/conditions/03/12/pillow.angel/index.html
This story raises what seems to me to be the same issue. Who makes these decisions and how are individual rights maintained and honored - here when the individual cannot make the decision - as with a baby.
Posted by: George | March 12, 2008 7:04 PM
And I wonder if that neonatologist also supports increased social spending so that such people can be more easily cared for all their lives, reducing the burden on their families. My guess is that he doesn't, since most Texas physicians I know of are overwhelmingly Republican/Libertarian and opposed to social spending.
Posted by: deang | March 12, 2008 7:10 PM
@Wrought: Thing is, I think the kid did have a natural birth. It was when the cord would be cut that it would suffocate. And there was a way to save the child and have it lead a most likely totally normal life.
So why not? I believe it's a moral duty to try to make sure the kid survive. When it's in the body of the woman, it's her business, when it's out, it's very different.
In the 2nd case the kid would be defficient... So it makes my heart bleed for the 2nd brat here. I think it would've been better to let it go.
Posted by: Michelle | March 12, 2008 7:10 PM
I think this is one of those rare occasions where unsound reasoning applied to faulty premises manages to produce a conclusion which is nonetheless right. Even a stopped clock is showing the right time twice a day.
Sometimes, there are no obvious boundaries; every case has to be judged on its own merits. In an ideal, rational world, people's feelings would be considered strictly in accordance with their interest in the outcome (i.e., the views of assorted rabid pro-lifers who aren't going to be the ones giving birth and having to look after the child wouldn't count for as much as those of the mother), but we humans are irrational creatures by nature and our emotions tend to get in the way.
Posted by: AJS | March 12, 2008 7:15 PM
Well, this was a once in a century thing for you, PZ.
If this had taken place 50 years ago, 60, even 100 years ago, there would have been no way to save this fetus. And from the sounds of it, without reading the article or knowing the family's history, this is a genetic mutation/condition and thus with the doctor, using the law to step in where he shouldn't have, is helping to propogate genetics that should have not been passed on.
Posted by: Scorpious | March 12, 2008 7:26 PM
Several respondents seem to let an almost vestige of
religious emotionalism, though not consciously admitting
to this, of equating a life or death situation with the
idea that all life is sacred. Life is not sacred, as this
can be demonstrated throughout human history and is only
quantified by our repulsion to interfere with matters of
life and death. Leave the question of the sanctity of life
to it's religious adherents, and not to sensible human
beings who can reason on a higher plane and not let their
emotions dictate the outcome of theirs or others decisions.
To many of you,PZ's opinion is akin to heartlessness and
future grief, but I agree and respect his stance and laud
him for expressing it so honestly and without agenda.
Posted by: Holbach | March 12, 2008 7:34 PM
"There was a way to save the child..."
And if it had not worked? ALL medical procedures carry risk. So, if you are saying that we OUGHT to save the child, how about you stepping up to take care of the ones where it didn't work out so well?
Pardon me for being rude, but I think that the people who are going to have to eat the s**t sandwich had better be the ones deciding how it gets made.
Posted by: John | March 12, 2008 7:34 PM
The genetics thing isn't as clear cut as all that. The article states that they were monozygotic twins, i.e. genetically identical. One twin appears to have been completely unaffected by this structural problem, making me think the defect is probably something downstream of gene expression. Even if it is a genetic defect, it isn't a particularly penetrant one, as evidenced by the unaffected twin. Moreover, even if the effective child had died, his twin (who also carries the faulty genes, if it is indeed genetic) is free and clear to reproduce. There have been some thought provoking arguments against medical intervention in this case, but the argument from eugenics isn't one of them.
Posted by: DanioPhD | March 12, 2008 7:41 PM
Sometimes it happens, but I find I'm in disagreement with PZ on this one. Reading the article, it is clear the parents had no desire to let their child die, but were hamstrung by their idiot beliefs. Everyone involved in this decision (even the JW liaison) sought whatever loophole was available, and lo and behold one presented itself, which tells me more about the fallibility of Witnesses and their idiot beliefs than anything else.
My position is pro-choice, but I cannot see what PZ suggested for this particular case as being anything other than infanticide: The child, following a routine operation with a high success rate, is likely to have a completely normal life (albeit, as MLF @ #18 said, an extremely awkward one later on when he discovers this article and understands what it could have meant). This case is nothing like the one discussed with the child ending up severely retarded, blind, and deaf, and is the reason why the doctor who wrote this article chose to include it: The reverse decision in that one would have been more humane had the doctors not chosen to go for the glory.
I'm just sorry that PZ has such a dim view of what constitutes a human being ("I think we concede too much when we simply bestow the privilege of personhood on any incompletely differentiated blob with 46 chromosomes."). This baby was by no means an "undifferentiated blob" as PZ suggests, but a child with a fatal, but easily correctable, birth defect. (And for genesgalor @ #38: I'm sure PZ would argue that the genes themselves were not defective, but rather the defect was in the development sequence. Otherwise BOTH twins would have had the defect, you twit.)
I see that the "pillow baby" example has been broached (George @ #42), and I feel this is another matter entirely: The child was normal at birth but her neurological development stopped for whatever reason. This could not be foreseen, and the decision to have her surgically altered deserves none of the wailing, hand-wringing and rending of garments that have been presented in the media. The parents chose to save their child the pain, frustration, and terror of having no idea what was happening to her developing body. This child was never ever going to have a normal life, and the idiots that have accused the parents of denying her one are themselves the ones in denial.
And John @ #48: Everything carries risk, even supposedly normal childbirths (see above). Yours is a flawed argument, moreso since it is clear the risks of the operation were minimal.
That's my two cents...
Posted by: Sir Craig | March 12, 2008 7:46 PM
Whatever happened to, "Primum non nocere?"
"Since at least 1860, the phrase has been a hallowed expression for physicians of hope, intention, humility, and recognition that human acts with good intentions may have unwanted consequences."
Posted by: k | March 12, 2008 8:11 PM
I'm a little torn. The first case does sound like a pretty simple procedure being objected to for only non-rational reasons, and allowed by non-rational responses. A truly hard call. I'm glad that the kid lived, but if it had been allowed to die I wouldn't want to see charges pressed.
The second case is altogether wrong. I understand the blind, ignorant passion that some people have for preserving life at all costs-this same urge has helped us along the way to great achievements in medicine. But in a case with a bad prognosis, the doctor was way out of line and should be punished. The only fair remedy would be to have the doctor and hospital help pay for the child's needs, but of course the suit was thrown out. I say of course, because there is no way that authoritarian moralizers will ever be held accountable
for their abuse of other's rights in Texas.
Petty things like responsibility and accountability are just for us poor sinners, not some beacon of god's love like this busybody doctor.
You who think that a potential parent should have their rights stripped just because they don't feel the life-preserving urge as strongly as you, I really think you should resist that urge and learn to mind your own a bit better, unless you really feel like sharing in the responsibilities. You can vote for universal healthcare or help raise millions in charity money, but that's just a drop in the bucket. Better kick in some cash yourself,
for the lifetime of medical expenses. Help out with the years of bathing, asswiping, lifting from wheelchair to bed. Help with the endless feeding and training that will go on for decades without improvement. Give up the rest of your functional life to care for this human that you just had to save.
Otherwise, you are being a sweet, sentimental, and completely useless and despicable hypocrite!
Posted by: Neil | March 12, 2008 8:13 PM
I agree with PZ. The parents chose abortion and the doctor was out of line intervening. Even if they made the choice for all the wrong reasons.
Posted by: Epistaxis | March 12, 2008 8:19 PM
I'm really torn on this. End of life issues have been quite a bit on my mind, since I lived fairly near the hospice where Terri Schiavo was facing her end of life issues. I strongly object to interference in the legally responsible party's choice, be it husband, parent, or health care surrogate. I hope I never suffer because someone over-rides my own health care surrogates decisions.
In the second case, what happened was awful, no doubt about that. Having raised 4 kids with varying handicapping conditions, from moderate to severe, I know how destructive that can be to a family, and the huge financial and emotional burdens. In my case I was lucky, my kids improved in functioning over time, but that isn't always the case. Also in my case, if I'd taken the advice of the doctors (or they had obtained a court order), my little Tay never would have likely been dead.
On the other hand, I'm acquainted with a woman whose abusive husband almost killed her in car crash he engineered. At the hospital, he signed orders to deprive her of treatment, and if her other relatives and the doctors hadn't stepped in and done something, this lovely lady would be dead today (yes, the now EX hubby did hard time). ...oh, and she is very pleased to be alive.
We also have laws protecting children from medical neglect, and I think that's necessary also. I've met enough parents who'd rather spend their money on a bottle of vodka than the bus ride to get their kids vaccinated.
The problem in my mind is that there are so many places where these issues overlap. I don't think it was right for the JW parents to deny their child medical care on the basis of their religion (that was obviously a foolish reason to deny their child care. I don't think it's right for the doctor to have made the decision for them, since they ARE the legal caregivers for the child and should make choices in the best interest of the child.
PZ talks about age and interests. At what age should you legally not be able to deprive a child of medical care? Right now it seems protections and rights come with birth. If we assume an infant isn't a full human with interests and rights, what protection do infants have under the law? If a baby-sitter strikes an infant and kills him, is that murder? Or doesn't it matter because the baby isn't old enough to have interest in his existence?
Finally, what makes you assume that the JW parent's weren't attached to their child or that the child is unwanted? Remember, they believe that they will have their child forever in eternal life on New Earth if they allow this "first, earthly death" where as allowing the doctor to operate will mean they will likely never be reunited.
Posted by: dorid | March 12, 2008 8:29 PM
I typically agree with what you say PZ but this post struck me as pretty cold. It seemed to be a pro-abortion argument really. And that's fine, but this isn't abortion.
Letting an infant die of suffocation after birth makes me cringe. That's like allowing your child to die of starvation by not feeding it, and then saying "hey, nature took its course."
I'm not saying the Doctor had any standing to do what he did. I'm just saying that it's pretty messed up that the parents were willing to let their child die like that.
Posted by: Santokes | March 12, 2008 8:31 PM
oops. that's what I get for not proofreading. Tay never would have lived, or would have been dead... not "never would have been dead"
Posted by: dorid | March 12, 2008 8:31 PM
@John #48: If it wouldn't have worked the kid would've died. What's the problem? You try to save a kid, the kid had good chances of living, and have a normal life. Hey, do it. It's out of the womb. It was NOT an abortion, it's deciding over the life of a 100% formed child that came out of the womb! The parents wanted the kid to die while it was out there, available to be saved! That doesn't work. Sure it got a surgery on its first day of life, but so what? It's out there, they had the tools to fix it! And I hope that child will live a long and successful life.
That kid will have a story to tell.
Posted by: Michelle | March 12, 2008 8:33 PM
No, that case IS NOT IN ANY WAY like abortions.
Aborted fetus can not survive, with or without medical support. You cannot save it.
However, in this case the potentially viable baby was extracted. And there was a possibility that it can develop into a normal human being.
That's the difference. We must preserve life whenever it's possible.
PS: I support abortions.
Posted by: Alex Besogonov | March 12, 2008 8:35 PM
It's a tough call. My grandfather grew up motherless as a result of religious considerations overriding simple medical considerations, which I find reprehensible.
PZ, I agree with your last comment more than with your original post. While there is no magic line, but rather a gray area encompassing "personhood", and while we should respect parents as the best arbiters of true health dilemmas facing a non-autonomous newborn, that does not mean that dancing around religious loopholes is an acceptable legal or medical practice.
As others have said previously, it sounds from the article as if the parents are happy with the outcome of this low-risk medical procedure, provided they and their community are able to absolve them of moral responibility. This is not a fair consideration morally, medically, or parentally. If they are unwilling to accept responsibility for the decision, they are attempting to abdicate their parental responsibility, and that is precisely the situation in which the state ought to override. Were this a high risk procedure, my opinion would be otherwise. Were the child older, my opinion would be stronger. There are many borderline issues here, but to allow parental superstition to override child welfare is a dangerous precident.
Posted by: Spaulding | March 12, 2008 8:36 PM
I see an argument for universal healthcare in this thread.
I don't think that was genetic. I think his batshit insane father is to blame for a lot.
Yay! A living, breathing eugenicist! :-D
And another! Wow. I had no idea so many eugenicists were left.
What makes you think the lack of pulmonary circulation was genetic? I bet it's an issue of regulation in development: the other twin suppressed the development of pulmonary circulation anywhere too close to his own. It's fairly common that one twin of two has all internal organs in mirror-image.
Eugenics is ignorance.
Naturalistic fallacy. :-|
Posted by: David Marjanović, OM | March 12, 2008 8:51 PM
Taking me out of context David?
That was just my ,perhaps poor, attempt to counter the "what if they aborted Hawking" illogic.
I am pretty fucking far from a eugenicists.
Posted by: spurge | March 12, 2008 8:58 PM
Nope. Hitler was a perfectly viable and healthy baby. There was no reason to abort it.
However, in Hawkins' case there _is_ a medical reason (genetic disease, diagnosable before the birth).
Posted by: Alex Besogonov | March 12, 2008 9:06 PM
Again I thank you, PZ, for eloquently voicing my own thoughts on this issue far better than I could. I agree with you 100%, although I think the idea of "acceptable infanticide" is a complete public non-starter. And aside from any emotional hard-wiring we have on this idea, I do wonder if there aren't other indirect negative consequences to the adults involved, socially or psychologically speaking. I'm open to arguments.
One argument I'm not open to, however, is the "You just euthanized Hawking" argument. It seems to me this is arguing that what something MAY be is in some sense actual, real and present...that to abort (or euthanize) a fetus is in some genuine sense to kill the adult it might have been. I've yet to hear a good defense of that proposition. On the other hand, if it's merely an argument that the "opportunity cost" of the practice outweighs the benefits, I'd say the Hawking argument easily fails, unless perhaps we could demonstrate that humans with his affliction tend significantly toward his genius.
And yes, I know that nearly all of us, myself included, chuck the cost-benefit perspective out the window when it becomes too personally uncomfortable. I guess we have differing thresholds for that one. Though I wouldn't be surprised if I dropped it the second it was my infant we were discussing.
Posted by: rrt | March 12, 2008 9:30 PM
No. You don't get it. There's no way to save fetus' life when you abort it. Personally, I don't have problems with that.
Also, I don't have problems with letting a fetus die if it saves the life of a pregnant woman during childbirth.
However, it WAS possible to save the life of a newborn without adverse effects for woman. That's the crucial difference. In this case all measures must be undertaken to save child's life, no matter what parent's believes are.
Of course, it is also the parents' right to give this child to orphanage or foster parents.
Posted by: Alex Besogonov | March 12, 2008 9:55 PM
No. You don't get it. There's no way to save fetus' life when you abort it. Personally, I don't have problems with that.
Also, I don't have problems with letting a fetus die if it saves the life of a pregnant woman during childbirth.
However, it WAS possible to save the life of a newborn without adverse effects for woman. That's the crucial difference. In this case all measures must be undertaken to save child's life, no matter what parent's believes are.
Of course, it is also the parents' right to give this child to orphanage or foster parents.
Posted by: Alex Besogonov | March 12, 2008 9:57 PM
Oh, by the way people with ALS doesn't tend to be geniuses. However, they tend to die young and have horrible lives.
BTW, you come awfully close to eugenics with your arguments.
Posted by: Alex Besogonov | March 12, 2008 9:59 PM
It's monumentally ignorant to assume that all people who are mentally retarded and disabled have awful lives and therefore shouldn't be given the chance to live.
Posted by: erica | March 12, 2008 10:34 PM
I would call this a case in which reasonable people can disagree. That said, I have to chime in with the many disagreeing with PZ's position here -- "first do no harm" is indeed a guiding principle here. If you get an object from the store with a single loose fitting (a knob or whatever) and it is easily repaired, do you take it back on general principle or do the simple fix and go as if it had arrived in perfect condition? (My mother would do the former, but she seems to have buyer's remorse about almost everything.) Religious beliefs aside, it would be unconscionable in my opinion for a doctor to let an easily-repaired medical condition to kill a child before it has a chance to live.
Now that I've likened a child's life to a toaster, I wish to acknowledge the opposite point -- that of the damage wrought by trying to save a severely pre-term fetus. Yes, it is not always good, but there are also success stories. Two of the McCaughey septuplets have cerebral palsy, but they live as normal lives as possible under the circumstances (even if the smallest, a girl, may never walk). And in my personal experience I've met two people -- one the next door neighbors' granddaughter, the other a friend of a cousin of mine -- who were severely pre-term. The little girl has hearing loss in one ear but seems destined to be the sort of independent and fearless young lady that gives anti-feminists conniptions, while the other, though profoundly deaf, lives a fairly normal live and has an extremely hot (hearing) girlfriend.
So unless serious disability is a given, IMHO it's a gamble that must be made.
Posted by: Brian X | March 12, 2008 10:37 PM
This strikes me more as a 'slippery slope' argument.
In this particular case it was a routine procedure with low risk and high benefit. Next time it might be a physician of a different persuasion who may decide that its "life above all else" and perform High risk low benefit procedures where the child would be technically alive but never really have a chance to 'live'.
This is one of those cases that cuts both ways and it makes me very, very nervous.
Personally I'm a bit miffed that parents would rather let their infant die rather than take a low risk, high benefit procedure due to their back asswards superstitions. But there is no cure for stupid and humans are flawed creatures on many levels and we simply have to accept that or go mad.
I do wonder how they intend to hide this story from the child as he gets older. Once it appears on the internet it is there forever (hail google cache) and chances are pretty good he'll run across it one day.
Posted by: flame821 | March 12, 2008 10:42 PM
The other issue PZ brought up is 'forcing' the parents to deal with a lifetime of care, bills and emotional distress. Again, no one (let alone the state) should be allowed to force that on anyone. And this is were the even trickier part of the equation lays.
What if a simple, yet expensive surgery would repair all the damage but leave the family bankrupt and unable to support themselves?
What if it were an inexpensive procedure but it would require a lifetime of care? Or necessitate one parent quitting their job and solely tending to that child for the next several years?
While horrible positions to be put in, those sort of situations can ONLY be decided by the family in question. People always 'say' they will be there with time, money, etc to help, but how many come through in the end?
*shrugs* its just not a good situation anyway you look at it. But if it involves my child 'I' want to be the one making the decisions and not have to defend myself to a legal court or the court of public opinion. It is a difficult enough decision to make and live with.
Posted by: flame821 | March 12, 2008 10:50 PM
I have to disagree with PZ on this one. My thoughts on reading the article were that the parents were perfectly happy with this loophole in their religion. They have some crazy idea that consenting to save their son would have been an unforgivable sin, but it's okay if the decision is taken out of their hands. The JW grandmother asked for the judge to save her grandson (and, yes, I realize that "save" could refer to his soul or his life, or even both).
I think DanioPhD (#9) and Jane E. Valentine (#13) summed up my thoughts on this very well.
I do actually agree with you on a lot of your other points, including the gaspworthy one you made at #26. This was not a case of going "against the parent's [sic] wishes." Their wishes were that their son be saved, and the doctor did that. The hospital lawyer found that loophole whereby the surgery could be performed using donated blood and yet the parents remain sin-free. I think that'd be an interesting conversation with Jehovah.
Posted by: MandyDax | March 12, 2008 11:11 PM