did someone muck with the backend here

Re: An Alfie Evans Question

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Link.


Posted by: politicalfootball | Link to this comment | 04-25-18 1:53 PM
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My vague impression is that the medical authorities have determined? decided? that keeping him alive is pretty much just torturing him. So the theory is that his parents are being prevented by doing him harm by continuing treatment.


Posted by: LizardBreath | Link to this comment | 04-25-18 1:53 PM
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Wasn't there another baby with this kind of an issue?


Posted by: Moby Hick | Link to this comment | 04-25-18 1:55 PM
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3: Charlie Gard.


Posted by: politicalfootball | Link to this comment | 04-25-18 1:57 PM
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There have been other, different cases, too:

https://en.wikipedia.org/wiki/Ashya_King_case


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 2:08 PM
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Can Jehovah's Witnesses keep their kids from getting blood transfusions there?


Posted by: Moby Hick | Link to this comment | 04-25-18 2:12 PM
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Last paragraph of:

http://www.uhs.nhs.uk/HealthProfessionals/Clinical-law-updates/Young-person-refusing-blood-transfusion.aspx



The last time such a case was reported was of Re R (A Minor)(Blood transfusion) [1993]. The law has been firmly settled for 20 years.

The section 8 (Children Act 1989) specific issue order was designed specifically with this in mind, at the behest of the Jehovah's Witness community, among others. This order permits the court to exercise its power over (in this case) the specific issue of blood transfusion; whilst leaving the rest of the rights and responsibilities conferred by parental responsibility firmly with the parents. With such an order, transfusion is permissible. In desperate circumstances, such an order, or its oral equivalent, can be obtained over the telephone from a High Court judge in a matter of 30 minutes. This can be done through the site manager, who will direct you to the appropriate person to make this call, depending on the time of day. Perhaps it is for this reason that no similar contested litigation has been reported since 1993.

But if there really is insufficient time (i.e. less than 30 minutes) to make this application, then if the child will die without transfusion, and all feasible clinical alternatives and adjuncts to transfusion have been exhausted, then blood must be given to save the child's life, despite the refusal of patient and parents. English courts have never allowed litigation to commence against a clinician who saves a life in good faith.


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 2:17 PM
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Gah, dodgy blockquote.

Anyway, no, they can't.


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 2:18 PM
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in good faith

Does that include Presbyterians or just Church of England?


Posted by: Moby Hick | Link to this comment | 04-25-18 2:19 PM
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I think the JW mostly quit trying to stop kids from getting transfusions here, but that they had to remove the kids from their parents' custody to do it.


Posted by: Moby Hick | Link to this comment | 04-25-18 2:21 PM
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That wasn't very clear. I think that the JWs found a reason to allow transfusions for kids after courts found a way to remove the kids from their parents' custody if a transfusion was needed.


Posted by: Moby Hick | Link to this comment | 04-25-18 2:23 PM
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One of the dilemmas Alfie's case has raised is whether doctors are the right people to determine whether withdrawing life-support treatment is in "the best interests" of a terminally ill child.

Apparently, in Britain, doctors, not parents, have the right to decide to cut off life support, even over the objection of a parent. In the United States I don't *feel* like that can possibly be the law -- I might believe that a doctor could override a parent's wishes an order that a child be maintained on life support but it seems hard to believe that a doctor could order that life support be cut off when a parent wants life support to be kept on -- but I honestly don't know the law at all in this area. The British rule would seem (to me) to raise serious constitutional substantive due process concerns in the USA, honestly, I don't know this area of law at all.


Posted by: Robert Halford | Link to this comment | 04-25-18 3:31 PM
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s/b "could override a parent's wishes AND order"


Posted by: RH | Link to this comment | 04-25-18 3:32 PM
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Massachusetts case. I suspect U.S. practice varies widely by state and by family race/SES.


Posted by: Minivet | Link to this comment | 04-25-18 3:35 PM
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re: 12

What would happen in the US if a child was terribly ill with no prospect of cure, and their could only be prolonged by costly medical intervention, for the duration of their natural life?*

How long would treatment continue? And what if the parents had no insurance, or no means to pay for that care?

This above a genuine question rather than a piece of rhetoric.

* I'm not thinking here of cancer, but the sort of genetic disorder from which there is no possibility of recovery, and where someone might live years on life support with no possibility of any change.


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 3:37 PM
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I suspect that they would be treated if their parents wanted them to be.


Posted by: Moby Hick | Link to this comment | 04-25-18 3:38 PM
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And for as long as their parents wanted them to be.


Posted by: Moby Hick | Link to this comment | 04-25-18 3:40 PM
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re: 16

And the cost of that care would be borne by?

Again, genuine question. Because it's a reasonably common new story here that someone (often but not always a child) is raising money to go to the US for experimental treatment, or treatment unavailable on cost-benefit grounds on the NHS. And in those cases, it's usually pretty clear who is paying. There'll have been an appeal, or a rich donor, or something.

But what about poor Americans? And where there's no medical case to be made for recovery.


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 3:41 PM
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18 should read 'reasonably common news story'.


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 3:41 PM
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16 and 17 are my sense as well. As long as someone was willing to foot the bill, treatment would continue. At first I thought the Evans case was a cost issue, but that's not it. It does seem to be that the state has determined that treatment = harm.


Posted by: ogged | Link to this comment | 04-25-18 3:43 PM
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18 - I honestly don't know, but my *guess* is that treatment could absolutely continue as long as the parents and/or their insurance were able to pay for it. If they stopped being able to pay for it (and there may or may not be limits on what insurance companies can do in these situations, and interaction with state care/medicaid) my *guess* is that the hospital would not be required to provide free care indefinitely, but there may well be provisions for state-financed medical care in those situations.

Not adding much value.


Posted by: Robert Halford | Link to this comment | 04-25-18 3:44 PM
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As long as someone was willing to foot the bill

Yes, that's my question. What happens if no-one is willing to foot the bill?

And yeah, I don't think the Evans case is a cost issue. But it is true that NHS doctors are part of a system that does make some decisions on a cost benefit basis. Usually not at the level of individual patients, but in terms of general clinical guidelines (from NICE) that say, "People with condition X should be treated with medicines A,B, or C." or "People with condition Z have a very low likelihood of recovery and the NHS will provide palliative care only". N.B. those clinical guidelines are usually based on a great deal of research and analysis, but they are only general guidelines, and can be wrong about specific patients, obviously.


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 3:46 PM
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Kids almost always have health insurance (maybe not in the shittier states?) and have since Clinton was president. Life support isn't "experimental". "Local child dies from lack of feeding tube while parents cry" makes for very vivid TV and very bad publicity for hospitals. Nobody does cost-benefit calculations (the local word for that is "death panel"). Putting people in an institution and keeping them alive is something America is good at for certain values of "good."


Posted by: Moby Hick | Link to this comment | 04-25-18 3:49 PM
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re: 23

And that's generally what happens here, too.

What tends to get publicity is the edge cases where there's a genuine clinical case to be made that continuing life support is both pointless and cruel. And, obviously, sometimes (I don't know much about this specific case) in some cases those edge cases get handled badly.

There's no death panel thing happening. No-one is deciding vis a vis a specific patient, that they should die on cost-benefit grounds. But there might be guidelines that 'condition X has no prospect of recovery, and the NHS recommendation is palliative care only, and no heroic measures to prolong life.' And those guidelines will be based on both potential benefit to the patient, the prospect of suffering, and, sometimes, cost.


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 3:52 PM
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It's certainly possible that there are all kinds of poor kids being denied this and it just hasn't made the press.


Posted by: Moby Hick | Link to this comment | 04-25-18 3:53 PM
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Nobody does cost-benefit calculations

Except in the very general sense that lots of people die, because they can't afford to be treated.


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 3:53 PM
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This, from CNN, captured what I think struck me as very different

What most Americans found unusual "and perhaps radical about (the Charlie Gard) decision was, the family wasn't asking the hospital to continue treatment or the National Health Service to pay for it. They said, 'We have the money. We have a doctor in the US who's willing to do it. Just let us go,' " Lantos said. "And the courts essentially said, 'Nope, we're not even going to let you go.' "
English law, explained Fenton-Glynn, does not see parents as having the "right" to make decisions on behalf of their children. "The concept is called parental responsibility: That is, the parent has a responsibility to make decisions, to look after the child," she said. "Parenthood doesn't give them rights; parenthood gives them responsibilities."


Posted by: ogged | Link to this comment | 04-25-18 3:54 PM
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23, 25 - yes, though I would be pretty surprised if there was a "parents want to keep life support on/state-financed CHIP insurer says it will stop paying and turn life insurance off" case but that we don't know about it, if only because it would make such a compelling news story.


Posted by: Robert Halford | Link to this comment | 04-25-18 3:55 PM
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life insurance s/b life support. I give up.


Posted by: Robert Halford | Link to this comment | 04-25-18 3:57 PM
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re: 28

Yeah. I don't know. These cases crop up every few years in the UK and they are rarely if ever, at the level of the specific case, about cost. But there is definitely an element of paternalism -- we decide what's best -- that is often well meant but can be gotten wrong. And clinical guidelines can be quite inflexible. The case I linked in 5 might be one of those, for example.


Posted by: nattarGcM ttaM | Link to this comment | 04-25-18 3:58 PM
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26: Somebody dying because they can't afford to be treated is the "free market." Somebody with insurance being told to try a cheaper generic drug before an expensive on-patent medication is a "death panel," at least if the insurance they have in Medicare.

It's a tricky language we use here.


Posted by: Moby Hick | Link to this comment | 04-25-18 4:03 PM
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28: I would also be surprised, but I've been surprised before.


Posted by: Moby Hick | Link to this comment | 04-25-18 4:06 PM
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Here's a disturbing story where the child has been brain dead (the coroner issued a death certificate!) and on long-term life support in the US. I think this case would not happen under English law.


Posted by: md 20/400 | Link to this comment | 04-25-18 4:15 PM
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It's certainly possible that there are all kinds of poor kids being denied this and it just hasn't made the press.

Undocumented kids' families are less likely to raise a stink if they suffer or die for lack of coverage. California added this group - at least the lower-income segment - to Medi-Cal state-paid coverage a couple of years ago.


Posted by: Minivet | Link to this comment | 04-25-18 4:21 PM
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Lots of things in that story are disturbing.


Posted by: Moby Hick | Link to this comment | 04-25-18 4:21 PM
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It's very interesting.

Relevant to ttaM's question:

According to New Jersey's 1991 statute on death, insurance providers can't deny coverage because of "personal religious beliefs regarding the application of neurological criteria for declaring death."

I don't know about other states, but I assume all of them know New Jersey knows more about death than they do.


Posted by: Moby Hick | Link to this comment | 04-25-18 4:42 PM
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I saw 33 a few days ago and was horrified. That one is extra disturbing because she is brain dead in large part because of racist treatment in the hospital.


Posted by: heebie-geebie | Link to this comment | 04-25-18 6:21 PM
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"Garden" is just another word for "Persistent Vegetative".


Posted by: ajay | Link to this comment | 04-25-18 6:21 PM
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That's just horrible.


Posted by: Moby Hick | Link to this comment | 04-25-18 6:45 PM
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38 to 36. 37 intervened.


Posted by: | Link to this comment | 04-25-18 8:47 PM
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I understood it. I meant "horrible" in the state-nickname pun sense.


Posted by: Moby Hick | Link to this comment | 04-25-18 9:13 PM
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OT but unless I am misreading this, Macron just finished up Trump's state visit by pretty much calling him insane in public.
https://www.theguardian.com/world/2018/apr/25/macron-goes-against-trump-on-paris-climate-deal-and-iran-nuclear-accord


Posted by: ajay | Link to this comment | 04-26-18 12:38 AM
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The original judgment is here if you want to see the legal reasoning. It basically boils down to "the sole principle is that the best interests of the child must prevail and that must apply even to cases where parents, for the best of motives, hold on to some alternative view".

Generally, and particularly in this sort of case, my understanding is that US law is much more deferential to parents. That may in part be why the US is so resistant to the Convention On The Rights Of The Child


Posted by: Ginger Yellow | Link to this comment | 04-26-18 1:12 AM
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IIRC the Children Act 1989 created the principle that the child's interests are paramount and the courts can enforce this over parents' (or anyone else's) objections. If you think back to any of the UK scandals of the 80s you can see why.


Posted by: Alex | Link to this comment | 04-26-18 1:37 AM
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And...here come the Russians.

https://twitter.com/Byline_Media/status/989440995745058816

Family is getting advice from a Russian pseudo-lawyer also associated with Nigel Farage, Trump, and, well, Russia.


Posted by: Alex | Link to this comment | 04-26-18 4:04 AM
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From what I've read the doctors' position is that the child is nearly brain dead, very little "white matter" left in his brain. However, the reason his family can't take him elsewhere is that it would be "torture" to do so. If he is brain dead he is incapable of feeling pain or reacting to "torture." The child has no "interests" if their claims about his brain are true.

The whole thing seems more like doctors saying "we have the legal right to make the decision, so sod off."


Posted by: DaveLMA | Link to this comment | 04-26-18 5:00 AM
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Family is getting advice from a Russian pseudo-lawyer also associated with Nigel Farage, Trump, and, well, Russia.

Was that who arranged their trip to meet the Pope?


Posted by: Cryptic ned | Link to this comment | 04-26-18 6:10 AM
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From what I've read the doctors' position is that the child is nearly brain dead, very little "white matter" left in his brain. However, the reason his family can't take him elsewhere is that it would be "torture" to do so. If he is brain dead he is incapable of feeling pain or reacting to "torture." The child has no "interests" if their claims about his brain are true.
Well he is, or was at the time of the judgment anyway, having frequent seizures, so clearly not brain dead. The doctors say it's very hard to tell if he can or or cannot feel pain, given his condition. For example:

It is my opinion (and that of my intensive care consultant colleagues), that Alfie has a poor quality of life. He is completely dependent on mechanical ventilation to preserve his life. He has no spontaneous movements, cannot communicate and continues to have frequent seizures. I believe that is it unlikely that Alfie feels pain or has sensation of discomfort but I cannot be completely certain of this since Alfie has no way of communicating if he is in pain or discomfort. I believe that given Alfie's very poor prognosis with no possible curative treatment and no prospect of recovery the continuation of active intensive care treatment is futile and may well be causing him distress and suffering. It is therefore my opinion that it is not in Alfie's best interests to further prolong the current invasive treatment. It would, in my opinion, be appropriate to withdraw intensive care support and provide palliative care for Alfie for the remainder of his life."

And:

Alfie has shown severe/profound developmental delay and has lost what skills he had acquired entirely. He will never make any developmental progress (gross motor, fine motor, vision, hearing, social, emotional). Alfie is not responding to any painful or uncomfortable stimuli other than with seizures or with spinal reflexes to uncomfortable/painful peripheral stimuli. Due to his underlying neurological process it is highly unlikely that Alfie has any awareness of pain or discomfort and does not show any neurological signs that would suggest that he is in pain or discomfort such as increase of heart rate, blood pressure, respiratory rate to uncomfortable/painful stimuli. It is likely that the pathways that would usually transmit the stimuli are interrupted/dysfunctional making a cognitive awareness of pain unlikely. However, as Alfie is unable to communicate, it is important to consider whether, despite his inability to respond, Alfie may still have some awareness of pain and discomfort and this should therefore be kept to an absolute minimum considering that he might still be able to "feel" uncomfortable sensation I think it is unlikely that Alfie has any ability to be reassured by the voices and touch of his parents.


Posted by: Ginger Yellow | Link to this comment | 04-26-18 6:31 AM
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45: Just to check is Russian ancestry or citizenship now an automatic indication of untrustworthiness in your estimation? Cause you're emphasizing pretty heavily that he is Russian.


Posted by: Bass | Link to this comment | 04-26-18 6:34 AM
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That may in part be why the US is so resistant to the Convention On The Rights Of The Child

No. It's because we have daddy issues and Ain't No One Gonna Tell Us What to Do Or How to Raise Our Damn Kids, Over Our Dead Bodies, That'll Be the Day.


Posted by: heebie-geebie | Link to this comment | 04-26-18 8:21 AM
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49: In combination with, you know, delivering a lot of supposed archive documents to UKIP MEP Gerard Batten in order to further his political goals and then pulling the same trick with Daily Caller to "expose the Marxist foundations of the Obama presidency" and now showing up working for something called the "Christian Life Centre".


Posted by: Alex | Link to this comment | 04-26-18 9:07 AM
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NO: It's the Christian Legal Centre, which has been trying for decades now to import American fundamentalist attitudes into British law, and just as repeatedly failing. Since one of their main campaigning tactics is lying about cases by omission everyone else on their side hates them (including the all party parliamentary group for evangelical christian MPs) because they inevitably fight and lose high profile cases.

Stroilov seems to be even worse than their usual guy, Paul Diamond, who is at least a qualified lawyer, though one whose views once led me to ask in a radio interview exactly how hard he believed a husband should legally be able to hit his wife.

As I read the case, he persuaded the poor parents that they had a legal right to remove Alfie from the hospital so they attempted to do so by force, more or less, and were thrown out. That seems to have been the episode that made a compromise seem impossible. But to read the details of the poor child's treatment is to be quite clear that the only question is where and how he is going to die.


Posted by: NW | Link to this comment | 04-26-18 9:32 AM
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I don't mean capital NO -- I just have a hard time getting my finger off the shift key in time.


Posted by: NW | Link to this comment | 04-26-18 9:33 AM
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An entirely novel bad take on the situation.


Posted by: dalriata | Link to this comment | 04-26-18 9:57 AM
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That's gorgeous. Because of course they're happy to deal with heavily armed passengers at commercial airports these days.


Posted by: NW | Link to this comment | 04-26-18 1:04 PM
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Everything is an action movie to these guys.


Posted by: ogged | Link to this comment | 04-26-18 2:40 PM
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I wonder what the bioethics committee would make of admitting the patient with the armed parent.


Posted by: Moby Hick | Link to this comment | 04-26-18 2:55 PM
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If I had a gun, I could impose my will upon the world, unless somebody else had a gun. Or I have no possible way to determine if the person telling me they can't do something or tried but failed is being honest. Or it takes longer than I can stay awake. Or it requires the cooperation of two or more people who are not in a position where I could shoot both of them from the same spot.


Posted by: Moby Hick | Link to this comment | 04-26-18 3:06 PM
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I imagine that no amount of explaining would bring the guy to a realization of how pathetic he sounds. He intends to be, and thinks he is, the opposite of pathetic!


Posted by: CharleyCarp | Link to this comment | 04-26-18 3:12 PM
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Aaaa. Pathetic.


Posted by: Opinionated Fonzie | Link to this comment | 04-26-18 3:28 PM
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On occasion, I see my peers who have high school-aged daughters posting memes about their guns and the effect of the gun toward improving the behavior of the boys who might be interested in their daughters. If the high school boys are posting memes about shooting middle aged men in the back, I haven't seen it.


Posted by: Moby Hick | Link to this comment | 04-26-18 3:33 PM
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Incels at the point of a gun, dreaming of one day being on the other side. Both ready to blame the daughters for anything they might do.


Posted by: fake accent | Link to this comment | 04-26-18 4:05 PM
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Poor kid died this morning


Posted by: NW | Link to this comment | 04-28-18 12:50 AM
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63: I heard that on the radio this morning


Posted by: Bostoniangirl | Link to this comment | 04-28-18 5:35 AM
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I always think of the Onion headline, "Terri Schiavo Dies of Embarrassment" under the most inappropriate of circumstances.


Posted by: heebie-geebie | Link to this comment | 04-28-18 5:42 PM
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63: Just saw this. That poor child.


Posted by: Just Plain Jane | Link to this comment | 04-28-18 6:32 PM
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42- Arguably Macron mistranslating himself, where a more appropriate word would be "senseless".


Posted by: SP | Link to this comment | 04-29-18 5:35 AM
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I feel like, by analogy with the Bush administration, I should deliberately eat more French fries in support of Macron.


Posted by: Moby Hick | Link to this comment | 04-29-18 6:06 AM
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