Child euthanasia

Annika sent me a link to this story with a disturbing title:  Netherlands Hospital Euthanizes Babies.  An excerpt:

A hospital in the Netherlands - the first nation to permit euthanasia - recently proposed guidelines for mercy killings of terminally ill newborns, and then made a startling revelation: It has already begun carrying out such procedures, which include administering a lethal dose of sedatives.

I read that first paragraph, and promptly stopped.  Tears welled up.  I spent a couple of minutes returning student emails, and then, calmer, returned to the article.  I wanted to be open to the possibility that I was having an irrational reaction to a single inflammatory sentence.  I read on:

The Groningen Protocol, as the hospital's guidelines have come to be known, would create a legal framework for permitting doctors to actively end the life of newborns deemed to be in similar pain from incurable disease or extreme deformities.

The guideline says euthanasia is acceptable when the child's medical team and independent doctors agree the pain cannot be eased and there is no prospect for improvement, and when parents think it's best.

Examples include extremely premature births, where children suffer brain damage from bleeding and convulsions; and diseases where a child could only survive on life support for the rest of its life, such as severe cases of spina bifida and epidermosis bullosa, a rare blistering illness.

Now, of course, I'm welling up again.  Perhaps I ought to leave the whole damned piece alone, as I am clearly too sentimental to deal with this. 

My first concern as a parent would surely be that my child not be in pain.  I'm not a doctor, but it strikes me that the Dutch have posited a false dichotomy:  either the child is in agonizing pain, or it is euthanized.  Is there no medical technology that can stop a terminally ill infant's pain without immediately euthanizing the child?  Perhaps there isn't. 

Of course, I'm sure that adequate doses of painkillers could weaken a child's body, and even hasten death.  Is there any moral difference between deliberately euthanizing a child on one hand, and simply giving the child heavy doses of pain medicine that may have the side effect of death?  The outcome is surely the same, but somehow, it seems to me that there is a colossal distinction!

In my more extreme pacifist moments (especially after reading John Howard Yoder), I often remarked that "intent is irrelevant; actions are everything."  (I was arguing that all violence is morally equivalent, a position I found emotionally attractive but intellectually unsustainable.)  I think that's too harsh and un-nuanced an ethic. I cannot imagine ever finding it morally acceptable to put a child to death; I can find it morally acceptable to be so aggressive in treating that child's pain that death is hastened.   (If I'm not mistaken, doctor/theologian Scott Peck makes the same point in one of his books).

Any thoughts?

Comments

[John]

I recommend "Evangelium Vitae" on this subject. No, actually, "Forced Exit: The Slippery Slope between assisted suicide and legalised murder". By Wesley Smith, who is a friend and strong supporter of Ralph Nader. Both Fr. Neuhaus and Ralph Nader endorse the book-There's dialogue for you.

I must frankly say that, as a disabled person, I'm scared by this. Once they decide "Life not worthy of life", I'm on the hit list. Lord, have mercy on us!

[Hugo]

I've heard about "Forced Exit"; isn't it a play on the title of a book advocating euthanasia?

[annika]

The thing that strikes me about this trend against life is that it is confined to souls that can't speak in their own defense. The unborn, the elderly, people in comas, and now infants. There's no death penalty in the Netherlands, but they'll kill a baby for the crime of being in pain.

Hugo, a story like this really makes me question my support for the capital punishment. i don't think human institutions can be trusted with the power over life and death.

[Rob]

Hugo,

I saw the same report, after I added this entry to my blog. I tried to write something, but I wasn't able to come up with anything coherent.

Is the distinctions between withholding inappropriate lifesaving care, pain relief that (as a side effect) causes death, and active euthanasia a way we lie to ourselves so that we can accept some things?

To the men walking down the road in Luke 10, were they simply "withholding inappropriate lifesaving care?"

[Xrlq]

I think there is a huge moral difference between intentionally causing a death, on the one hand, and taking drastic measures that risk causing a death, on the other. Intentionally causing the death of a person who has committed a serious enough crime to warrant it is one thing. Intentionally causing the death of a helpless child, elderly person or someone in a coma, ostensibly for that person's own good, is quite another.

Unlike Annika, this issue does not shake my support for the death penalty, at all. What it does shake is any illusion I might have ever had that Europeans have any moral compass whatsoever. What else can you say about a people who value the lives of vicious murderers more than they value the lives of innocents?

Unlike those kids in the Netherlands, Scott Peterson got a fair trial to determine his guilt. In fact, he got a fairer-than-fair trial, which included a change of venue out of his own community, and into the notoriously anti-death penalty Bay Area. If he overcomes all odds and ultimately gets the penalty he deserves, everyone will understand why we did it: to punish him and avenge the two innocent lives that he willfully and intentionally snuffed out. We won't do it because because some doctor with a Messiah complex appointed himself as Scott's representative and concluded that Scott's own best interests are served by him dying. The idea is to put him out of our misery, not his own.

BTW, while I bash the Euroweenies for valuing the lives of killers more than innocents, I should note that their American cousins at the ACLU are no better. Recall all their caterwauling over Terri's Law, which supposedly violated the separation of powers by setting aside a legally imposed, de facto death sentence after it had been fully adjudicated by the courts. Now try to picture the ACLU making exactly the same argument about a person who has been condemned to death by a jury, lost every appeal, and then managed to persuade the Legislature either to abolish the death penalty outright, or to restrict it such that his crime would no longer qualify for it. Would the ACLU argue that his death sentence must be "grandfathered" in? I rather doubt it. But Terri's case is different; she didn't commit a crime, so her death is vital to the preservation of our constitutional democracy, much more so than your life or mine is.

[La Lubu]

I have not followed the link; I don't know if I'm ready for it yet. But I can already tell ya, this is one conversation that I'm not able to be 'objective' in.

My daughter (25 weeks, one pound, ten ounces--or 735 grams) spent over three months in the NICU before her neonatologist was willing to use her name. No one, and I mean, no one, expected her to survive. I was the only holdout, for a looonnnggg time. The shorthand term I developed in order to quickly explain to well-meaning friends who would ask about her, and how she was doing, was "alphabet soup". She had a list of over a dozen complications, most of which formed three-letter acronyms....IVH, PVL, RDS, BPD, ROP, NEC, DIC....if you're curious, go to my blog and look in the sidebar under 'Preemies'; click on the link 'For Parents of Preemies'. That's one of the first resources I found on the 'net when I was a NICU parent. It explains all the terms. Look, it's easier for me to tell ya what she didn't have wrong with her (her urinary tract. it always worked like a million bucks).

Anyway...when I'd get back home from the hospital (I lived in the neighborhood, so about the only time I came home was to eat and sleep), I'd get on the Internet and research like a demon. No one wants to really explain anything...it even takes the nurses a while to get on your side. I learned very quickly that "blue collar" is synonymous with "retarded" in the eyes of physicians and specialists....I'd go home, get on the medical sites, and just tear into it all...just rip it up. I'd come back to the hospital loaded for bear. It was a crash course in neonatology. I learned to sling medical lingo with the best of 'em...rapid-fire multi-syllable arcane terminology...I'd spit it like I was cursing in Sicilian. Then, and only then, I got respect (well, the nurses...I think they started their respect after I was changing iliostomy bags!).

It was six months (and two hospitals, and multiple surgeries) before she was home. Even then....I mean, first, it was "perhaps it's time to call a priest", then "well, no one knows what's in store (translation? "your daughter is going to be a vegetable"), to "well, there's services available" (translation? "your daughter will be severely disabled/retarded and unable to live on her own), to...well, good luck!

She's five now, in pre-K (late birthday, late start to school). If it wasn't for the cool network of scars across her belly (yeah, I told her they were cool, and showed her my classic "c" cut for comparison...after all, she'll have a whole lifetime of people trying to convince her that they're ugly. I want her to see them as a visible reminder of her strength), no one would know she was a preemie.

The point? I'm getting to that....somehow. During my research, I found plenty of medical sites that recommended not caring for these babies...that it was a waste of time, and money. They'd couch it in "oh, it's giving false hope for the parents", but really...it was about the money. It's about the dollar value placed on human beings.

My little girl is a "miracle baby". But she's not one in a million. I've met others here in the same city that have similar stories. There's a hell of a lot of stories out there...go volunteer at a Ronald McDonald House sometime. The experience was a real window on a world for me....I was one of the electricians that worked on that building....the new maternity/pediatric/NICU building. Never in a million years would I have thought I'd be spending so much time there ('cuz, after she was released, she had therapy four times a week).

Part of why so many preemies survive now, and why so many are doing better, is because of what has been learned over the years in caring for them.

There's a tendency amongst some in the medical industry, to want to "play God". It almost seems as if they want to make up for areas in which they lack knowledge---too many unknown variables---by loading the dice...in favor of themselves. That probably sounds harsh, but screw it! I've been through a lot, you know? Not all of them were like that, but too many were. Maybe it's inherent to the training they go through. Maybe it's the isolation of long hours and too little contact with the general public. Maybe it's the fear of failure, or frustration with a public that demands too much from them. I dunno. But the attitude is there.

If someone had even once suggested to me that I just let her die, if someone had even breathed the slightest suggestion,...let's just say they'd'a found Jimmy Hoffa first, 'kay?! Did my daughter feel a lot of pain? The jury is still out on that one...some will say that early preemies don't feel as much pain, because their nerves haven't developed to that extent yet. Pain is so subjective anyway....I experienced my c-section as more of a dull ache....like deep bruising, like a bad mountain bike wipeout. Not sharp, very 'liveable' (I was far more wiped out from the blood loss...low blood pressure and fatigue). So, who knows?

OK, I've rambled enough, no? Maybe I'll try the link now. It'll probably piss me off. So, I might be back! (I've only had one post-traumatic stress response...to the episode of "ER", where the preemie baby didn't make it....the baby had NEC, what my daughter almost died of--twice. Yep, I lost it!)

[Rob]

XLRQ,

I think there is a huge moral difference between intentionally causing a death, on the one hand, and taking drastic measures that risk causing a death, on the other.

Ok, what's the difference?

In the case of pain relief, if there was a chance the child would recover, the pain relief would be withheld. Why is it suddenly all right to administer the pain relief if the child is not expected to recover, especially since it will shorten the life of the child?

[joe]

"Is there any moral difference between deliberately euthanizing a child on one hand, and simply giving the child heavy doses of pain medicine that may have the side effect of death?"

The word "may" above is what clarifies some of the difference. However, given these diseases/ complications it is well know that giving heavy doses of pain killers i.e. Morphine will, not may, hasten the death process. So is euthanasia different when done through a single dose or multiple doses over a day or two or three? Essentially this is the same. The difference is in alleviating or minimizing guilt on the responsible party who makes the decisions of care. There is a moral responsibility in doing this.

[NancyP]

Rob, phrase that post using the word "adult". Most adults with terminal cancer prefer to have the option to have adequate pain relief even if their respiratory systems might be dangerously depressed by such medication. Most adults refrain from using high dose pain meds in such situations because they have recognised plans - to hang on until a child's graduation a week from then, or until a sister can fly in from another city, or to reach a 50th wedding anniversary, etc.... . When the plan is accomplished, or if they have no such plan, they medicate. Infants, on the other hand, live entirely in the present, and very young children live mostly in the present. It seems irresponsibly cruel for parents to refuse pain medications for these infants with terminal disease.

[Hugo]

Again, intent matters, joe. In practice, there may not be much of a distinction -- but somehow, this is one of those moral areas where stated goals are more important than methods. The means, if you will, justify the ends.

[annika]

Wonderful comment La Lubu. You made me realize another problem with the Groningen Protocol, over and above the obvious moral problems. If we start giving up on sick newborns because there's the easy out of euthanasia, wouldn't that prevent the development of medical advances that might in the future help other newborns with the same conditions?

[Hugo]

Yes, La Lubu, thank you. Very moving, and much needed.

[John]

There is a difference. There's a difference in intention, to begin with. In one case, you are acting to end life, deliberately. In the other, you are acting to end pain, not life. Further, the "double effect" is only right if there is a chance that the patient might not die; ie: if he will certainly die, you can't give it to him. If there is only a possibility that he may die (even if it's a significant one), then the pain-relief of the patient takes precedence, even if it will shorten life. Evangelium Vitae sets this out well.

La Lubu, that was a moving and truly gorgeous story. Thanks for sharing it.

Rob: I think you are right to be wary, but there is a difference between killing and refusing or witholding extra-ordinary care. Humane care, which is food, warmth, pain relief (insofar as possible), cleanliness and ordinary care (like stopping the blood when you chop your arm off) those things, no one should be denied. (Note to Michael Schiavo). Extra-ordinary care, such as blood transfusions, respirators, organ transplants, chemotherapy-These things can be refused (or denied, by the consent of the patient's family, if the patient can't) if using them would do more harm than good. If you have an aggressive cancer, and a 2% chance of controlling it in terrible pain with chemo for 2 extra months, then you can refuse, if you like, I think. But that's different. That's accepting the inevitable gracefully, not chopping off life artificially. There is a point when it becomes wrong to hold someone, and they should be let go. But you shouldn't give them a push.

Hugo: Yes, there's a book by that Vulture Derek Humphrey, called "Final Exit", and Smith, who by the way is a member of the International Anti-Euthenasia Task Force (www.iaetf.org), and implies in his book he is pro-choice, as well as being a Nader-fan is my favourite writer on this topic. Strange, no?

[joe]

John: “Further, the "double effect" is only right if there is a chance that the patient might not die; ie: if he will certainly die, you can't give it to him.”

In all the hospice patients I have taken care of I have never seen this to be the case. I have never seen a doctor of family withhold pain meds because it was known the patient was going to die.

“Humane care, which is food, warmth, pain relief (insofar as possible)”

gastric tube feeding is extra ordinary for a person who can no longer feed themselves

“…These things can be refused (or denied, by the consent of the patient's family, if the patient can't) if using them would do more harm than good”

these things can be refused for any reason regardless of the good or bad they may be.

[Amanda]

As a child who suffered through frightening and painful illnesses, all I can add is that when you are in the middle of it, you do wish for death. Of course, I'm glad to have lived but if there was nothing but pain and death in my future than I would have rather died immediately. Or that's how I remember it....

[La Lubu]

Annika: exactly. When my daughter was born, a study was just being completed on the use of Aquaphor (an emollient) on preemies; it not only helps their fragile skin, but reduces cases of infection as well.

A young man down at the end of my block was born at 25 weeks; he has cerebral palsy that affects his gait, and ROP (retinopathy of prematurity) gave him poor, uncorrectable vision that keeps him from driving. Didn't stop him from completing college, though (due to discrimination against the disabled, he's still having problems finding a job, but that's a whole 'nother ball game, there). His twin brother, given the same care, died. The viability of early preemies is so unpredictable.

One of my union brothers who came to see me in the hospital (he's a real trip...in the middle of all that drama, and he had me laughing so hard I thought I was going to blow staples across the room!) had a son born that early too. His son has cerebral palsy to the extent that he uses an electric wheelchair and has limited use of his arms. He graduated from the University of Illinois with honors and is an engineer for Boeing.

I followed the link...it was pretty mild, in comparison with some of the sites I've been to that advocate withholding care from preemies. No one can really predict which babies are going to make it or not. And no one knows what the outcome is going to be for those who survive. Ever listen to Stevie Wonder? He was born premature.

Being a parent, being in that position....to survive, I developed a certain steeliness, and a tunnel vision. I was in battle mode---that's what I called it. One of my road buddies, who was both a combat vet and father to a preemie (27 weeks) told me I wasn't far off the mark in that assessment. A lot happens, and very quickly.

I don't know anything about the medical system in the Netherlands; I wonder what would happen if the parents wanted care given to their child, but the physicians said, "nahh, no hope." Would care still be given? Or would it be, "sure, we'll give the care....you just pay in cold, hard cash first." Because I can't help but think if that were the dominant line of thinking here, that insurance companies would cancel payment.

[zuzu]

Recall all their caterwauling over Terri's Law, which supposedly violated the separation of powers by setting aside a legally imposed, de facto death sentence after it had been fully adjudicated by the courts.

Considering you raised a due-process comparison with Scott Peterson's trial in the paragraph preceding this statement, I'm not sure how you get to this conclusion. The problem with Terri's Law was that Jeb Bush did not have the power granted to him by the Florida Constitution to do what he did, which was overturn a fully-adjudicated decision of the state's highest court by executive fiat. It was a power grab, pure and simple.

[John]

Amanda, of course, that's true. I'm still in that situation sometimes. But you get over it, the pain-killers kick in, you get some sleep. People change.

Joe: I expressed myself badly. I meant that your intention must be to cure, not to kill, and that even if killing is the outcome, so long as it has a substantial element of cure in it, it's fine. Yes, of course people also have the right to refuse medical treatment in any case, but never humane care. The "more harm than good" bit ought to have had a "they consider that it will cause" in front of it; so it is a statement of the likely mental process, not the law or practice. (ie: They are offering treatment X, I consider treatment X to be not worthwhile, therefore I shall not consent to it). As for feeding tubes being extraordinary for people who can't feed themselves, I respectfully disagree. I think to determine that, you would have to look at the rest of their health, and whether they were likely to recover. Wesley Smith has dozens of chilling examples of paralysed or supposedly "non-responsive" patients who, although they were alive, and wanted to live, were unable to feed themselves, and had their feeding tubes removed. Terri Schiavo is but the latest example of this.

[Xrlq]

Zuzu, you've got the basic facts wrong. Terri's Law is, as its name implies, a statute, not a mere executive order. The phony "separation of powers" argument is based on the silly premise that only courts, not legislatures, have the authority to modify laws.

Of course the ACLU does not believe its own rhetoric here. If they did, they'd apply it more consistently. For example, rather than backing Proposition 66, a principled ACLU would have opposed this "power grab, pure and simple," whose mandatory re-sentencing provisions would have overturned thousands of "fully-adjudicated decisions of the state's highest court" by "legislative fiat." The separation of powers issue in both cases is exactly the same, the only difference being that in this case, the ACLU liked the fiat.

[Amanda]

John, your dismissive attitude kicked in before you noticed what I had to say. If I had no exit from my pain and fear, I'd rather be dead. Can I put it more plainly? Knowing you will survive makes all the difference.

Weirdly, not knowing if you will live or die makes the pain easiest of all to bear.

[zuzu]

Xrlq, I presume you've shifted from Florida to California simply to bash the ACLU on a completely different issue (without, of course, giving background on what you're talking about -- does Proposition 66 deal with the three-strikes law? You've really got to learn to provide context). The Florida legislature authorized Bush, at his behest, to override the court's decision in this particular instance and he then ordered the reinsertion of her feeding tube by executive order. It's most definitely a separation of powers problem. Rather than pass a law superseding the court's decision directly, which it can do, the legislature authorized Bush to exceed his powers and override the court "one time." They didn't have the power to do that under the Florida constitution, and if the court didn't stop that, there's no telling where it ends.

The difference between Florida's constitution and California's is that Florida's didn't support the legislature's empowerment of Bush while California's allows referenda.

[John]

Heck, I really am having a bad day. My point is actually rather similar to yours, Amanda-Sorry if I sounded dismissive. In fact, physical pain is something I can't dismiss, having to live with it. My point was that there ARE in fact "exits" from pain that fall far short of Euthenasia. Pain relief, or just someone to hold on to. Many people say they want to die; mostly what that means is that they want someone to suffer with them, to be with them, to help them. That is literally what compassion means-to suffer with. Sometimes, to employ a Kiwism, you need someone to say "What a bugger!".

[Xrlq]

Zuzu, you're reaching. If the Florida Legislature has the power to repeal the Kevorkian Act for everyone, as you apparently concede but the ACLU does not, then it also has the power to amend it in other ways, limit its scope, or even grant an official the power to override it completely under certain circumstances. That person happens to be the governor in this instance, but it needn't have been. It could have been anyone else, as designated by the statute. Other statutes give similar powers to the Secretary of State, the Insurance Commissioner, or countless other officials, many of whom you've never heard of, and most of whom owe their entire existence to one statute or another that was passed by the Legislature. That's what legislatures do.

None of this has anything to do with the quirks of California's voter initiative system vs. Florida's more traditional legislative power. Voter initiatives are subject to the same separation of powers challenges as other statutes are. If the separation of powers argument were legit, it would apply just as strongly here (if not 27,000 times more strongly given the number of people potentially affected by it).

[zuzu]

None of this has anything to do with the quirks of California's voter initiative system vs. Florida's more traditional legislative power.

So why bring up Proposition 66 at all?

The Schiavo case had been in the courts for years, and it's been almost 30 years since the Karen Ann Quinlan case. If the legislature had wanted to do something about discontinuing feeding tubes for any and all patients, they had time to act prior to the decision. Instead, they exceeded their powers by granting an "exception" to the governor to intervene "one time" during an election cycle.

[Rob]

Hugo,

Not a response, but a footnote to your article.