Another Terri Schiavo Muddle in the Making?

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Should authorities pull the plug on Janet Rivera, a woman who has been comatose for a couple of years in a Fresno, Calif. special care facility? In mid-July, Rivera's court-appointed conservator, on the advice of five physicians, asked that her respirator be removed and food and water be withheld. Some family members objected and the conservator reversed his request.

Rivera's situation differs in many respects from the Terri Schiavo case. First, Rivera is described as being comatose. Comatose by itself implies a possibly transient inability to respond to stimuli and temporary deep unconsciousness. On the other hand, the five physicians consulted by the conservator believe Rivera's unconsciousness is irreversible. Second, unlike the Schiavo case, Rivera's family members apparently all agree that she should receive artificial hydration and nutrition. And third, again unlike Schiavo's case, no one claims to know what Rivera would want to be done.

Although Rivera's court-appointed conservator says that expense played no role in his decision to have hydration and nutrition tubes withdrawn, there is an issue concerning how Rivera's care is being paid for. On July 28, the Chicago Tribune reported:

The cost of Rivera's care also has become part of the discussion.

Rivera's medical bills are being paid by Medi-Cal, the state-federal insurance program for low-income families.

Some bioethicists say that regardless of whether money is an issue in Rivera's case, her situation raises a question that's impossible to ignore in the end-of-life debate: How to decide whether it's worth spending limited resources to maintain life support in an apparently hopeless case.

"The stewardship of scarce resources does require us to take resources into account," said Ben Rich, a UC Davis bioethics professor. "But it has to be done carefully."

The cost issue and what is going to happen to Rivera in the immediate future was more or less resolved on July 29, when a California judge appointed one of Rivera's cousins as her conservator. The local Fox Television affiliate reported:

Rivera will likely spend the rest of her life in a hospital bed. Her family says they plan to keep her on life support until she is ready to die.

If Rivera's care were being paid for by a private insurance policy or out of her family's assets her case would not be a public issue. The weighing of benefits versus costs of care would have already been decided by the patient and/or her family in advance. However, decisions about rationing are inherent to government-financed medical care—bureaucrats, not patients, must weigh the benefts versus the costs on behalf of the taxpayers who are footing the bill. For now, a California court has ruled that Rivera's family can decide how much money California taxpayers must spend on her care.

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  1. If I remember correctly, there were a couple of similar cases in Canada this past year where the families desired to keep the patient on life support. The state run healthcare sytem wanted to remove the life support, most likely for cost reasons, although the hospitals argued that it was for moral reasons. In those cases patients and their families were religous and argued that for religious reasons the patient would not have wanted life support removed. And if I remember correctly, the courts in Canada ruled that the hospitals had to keep the patients on life support.

  2. If the State of California is allowed to pull the plug on this woman, the next thing you know, state funded euthanasia teams will be roaming the halls of nursing homes, clubbing the elderly and infirm.

  3. If Rivera’s care were being paid for by a private insurance policy or out of her family’s assets her case would not be a public issue.

    One of the strangest things I’ve ever read in Reason (granted, I’ve only been reading a year or two). The fact that most people use private insurance or assets has been a turned into a huge public issue. Beleive me, if it wasn’t the of California doing this, we’d be hearing about the faceless, heartless insurance company scumbags trying to maintain profit margins by offing the helpless.

    Why some people think this wouldn’t happen under some form of government funded healthcare is a mystery to me. Even weirder are the ones who do know but would find it okay…

  4. Jammer:
    What about the faceless, heartless hospital execs trying to maintain profit margins by keeping her alive?

  5. Putting aside the state paying for it, the question of how much to spend on hope(real or false) is interesting one with no good answer.

    I hope that I never have to make that choice and that however I go, it doesn’t burden my loved with with financial or moral dilemmas.

  6. Jammer: I obviously didn’t make myself as clear as I should have. You are right if, say a private long-term care insurance company tried to get out of paying what it promised to pay, it would be a huge deal – such a company would deservedly be called a scumbag.

    What I am suggesting is that the decision to buy private insurance is a weighing of costs (premiums) vs. benefits (care in the event of illness) that takes the rationing decision out of the public sphere. However, I must acknowledge that if the private insurance runs out, people (like Rivera’s family) expect the taxpayers to pick up the costs of care. That’s when explicit rationing comes into play.

  7. It’s easy.
    California just needs to write a law that says the comatose and brain-dead cannot be denied private insurance coverage, then make it retroactive to this woman’s situation.
    Next!

  8. the question of how much to spend on hope(real or false) is interesting one with no good answer.

    The question of how much of your money to spend on hope doesn’t have a good answer.

    The question of how much of other people’s money to spend on hope may not be so imponderable.

    I hope that I never have to make that choice and that however I go, it doesn’t burden my loved with with financial or moral dilemmas.

    Easily done. Appoint someone your medical power of attorney, with unequivocal authority to make decisions on your behalf if you can’t. Leave clear instructions on what you would want done.

  9. Don’t worry. With national/mandatory health insurance, no matter which plan is cobbled together, there will be unlimited health care for all and nobody anywhere will have to make difficult decisions.

    You have to undestand that Janet Rivera’s expenses are being paid for by the government which is the same as free.

  10. A quick way to see how long Ms. Rivera’s family is willing to keep her alive. Send them a monthly bill.

  11. “Rivera’s family members apparently all agree that she should receive artificial hydration and nutrition.”

    That shouldn’t matter anyway. Food and water is not “medical care.” (Neither is it, contra ZH 11:51, “life support.”) Food and water is food and water. Neither the family nor the facility should have any authority to deny it to an incompetent.*

    Death by dehydration is neither natural nor passive. It is an active (and gruesome) process willfully imposed by external actors, no different from putting a pillow over her face.

    (*As for taxpayers picking up the tab, let’s acknowledge that there are some libertarians / classical liberals who are not offended by the notion of minimum taxpayer support for the truly innocent incompetent. But that’s another thread.)

  12. by the government which is the same as free.

    Government isn’t free, there’s a hefty fuckin’ fee. Government costs a buck-oh-five.

  13. Food and water is not “medical care.”

    When its delivered via dishes and utensils, I would agree.

    When its delivered via tubes that are surgically inserted, and consists of prescription formulations, then I think “medical care” pretty much sums it up.

  14. When its delivered via tubes that are surgically inserted, and consists of prescription formulations, then I think “medical care” pretty much sums it up.

    There is no free tube-feed.

  15. KipEsq,

    Indeed. If a state tried executing a mass murderer by withholding food and water, the courts would undoubtedly rule that it was cruel and unusual punishment…yet we choose that method of death for comatose patients, because we’re too wimpy to actually kill them.

    To my mind, there’s very little moral difference between killing someone and putting them in a situation where they will certainly die. If the former can be done in a way that causes less suffering, we shouldn’t be afraid to do it.

  16. RC is exactly right.

  17. Beleive me, if it wasn’t the of California doing this, we’d be hearing about the faceless, heartless insurance company scumbags trying to maintain profit margins by offing the helpless.

    Not on Reason we wouldn’t.

    Apparently, it’s better when the bureaucrats looking at the bottom line consider only the money, and there isn’t any provision made to take other values into account.

  18. Food and water is not “medical care.”

    One could say that air isn’t medical care, either. I’m pretty sure putting sombody on a ventilator counts as medical care, though.

    Same thing.

  19. joe: Take your own values into account all you want, but please pay them yourself.

  20. “However, decisions about rationing are inherent to government-financed medical care – bureaucrats, not patients, must weigh the benefts versus the costs on behalf of the taxpayers who are footing the bill.”

    Oh please, Ronald! You don’t think there’s rationing by private insurers concerned with the bottom line? Why do you think some of them pay bonuses to adjusters on the basis of claims they reject?

  21. ..but please pay for them yourself

  22. This, in a way, cuts to the core of libertarianism. To wit: do human beings who are mentally and physically unable to fend for themselves have positive rights to food, water and shelter?

    I know “For the Children” is a deservedly-mocked trope that nanny-staters invoke for all kinds of nonsense…but can we mandate food, water and shelter “for the children”? And if said incompetents are not taken care of by the individual responsible, what happens then?

    Does the possible recognition of positive rights of children then infer that invalids and the mentally and physically *disabled* (note: not handicapped) possess the same rights?

  23. Yeah, I’m sort of in the “if the family wants her to continue to get care they should pay for it” camp, except for the fact that our health insurance system is already so messed up that the family is, unfortunately, fighting an unfair fight. That’s why you can’t make policy decisions based on individual cases. But, in a freer market, you would see more charity in cases like this.

  24. My point being that there isn’t a good answer to a situation like this right now. We (they) are dealing with the consequences of our policies.

  25. Ron Bailey | August 1, 2008, 1:44pm | #

    joe: Take your own values into account all you want, but please pay them yourself.

    The “value” at issue here being the ability of people to get the medical care they need to stay alive. It’s amazing how people like Bailey can shut their concern for this value on and off at will.

    Every week, we see ZOMG! somebody in Britain was denied medical care, those bastards!

    Croccodile tears. That certainly was easy.

  26. For now, a California court has ruled that Rivera’s family can decide how much money California taxpayers must spend on her care.

    It sucks that taxpayers are forced to foot the bill in cases like this, but until the system is changed, I don’t see any other option. Currently, poor people are forced to rely on the state for end-of-life medical care. Because the system is weighted so heavily in favor of the state sponsored system, there simply is no reasonable, private alternative. Because the state created these conditions, I don’t think that they should have any say in life support termination decisions.

  27. Every week, we see ZOMG! somebody in Britain was denied medical care, those bastards!

    Same sentiment, joe. When we are talking about someone failing to get medical care through a state system in Britain, it’s to highlight the failures of state health care systems.

    That’s the same thing that’s being said here. A bureaucrat is attempting to make a dollar-driven decision, same as with the NHS stories.

    The “value” at issue here being the ability of people to get the medical care they need to stay alive.

    That’s not the value being debated, because you’re removing the context. Where shoul”people” should get the money for their medical care from is at the heart of the debate.

  28. People need to take responsibility for themselves. Every state has Advanced Directive forms. Medical Powers of Attorney, DNR orders, etc.

    The missing information in this scenario is the wishes of the cucumber laying on the bed.

    The efficiency of the market analysis doesn’t provide much to answer the question of govt vs private insurance or the health care mess we have, but efficiences could be gained (and add a tiny amount of clarity) if people just admitted to themselves that they are going to die and fill out the proper instructions.

  29. “The “value” at issue here being the ability of people to get the medical care they need to stay alive.”

    But “stay alive” at who’s expense and with what purpose? And yes, like it or not, there is a high opportunity cost involved with this case. Limited resources spent on keeping her alive can be used to help others live as well, perhaps others who have a better chance in life than remaining comatose in a hospital bed.

    The issue here is why does continuing Rivera’s life superseed the needs of other terminally ill patients, who deserve to “stay alive” as much as she does. It’s a tough but fair question to ask.

  30. TAO,

    A bureaucrat is attempting to make a dollar-driven decision, same as with the NHS stories. And just like all of the stories about people being denied coverage by their HMO, which never seem to make it onto Reason.

    Where shoul”people” should get the money for their medical care from is at the heart of the debate.

    I understand that. I understand that even when a pretense is being made by the author that maximizing the well-being of patients is at the heart of the debate. I’m merely pointing out that fact.

  31. Another complication in the “this would be different if she had private insurance” argument is that most private insurance policies have lifetime payout limits. As soon as that limit is hit, it’s back to “the government pays for her care, or she’s left to die”. (And given the comment about a $200K hospital bill run up while Medi-Cal lapsed, I don’t think it would take long for her bills to hit a $1M or even $5M limit.)

  32. rana,

    The issue here is why does continuing Rivera’s life superseed the needs of other terminally ill patients, who deserve to “stay alive” as much as she does. It’s a tough but fair question to ask.

    In other words, it’s a rationing question, just like denials of service by the funds-limited NHS, and just like the denials of service by for-profit HMOs.

  33. Although the NHS doesn’t turn a profit. There isn’t some amount of money it has access to that it just chooses to take out of the health-care system.

  34. “In other words, it’s a rationing question, just like denials of service by the funds-limited NHS, and just like the denials of service by for-profit HMOs.”

    Sure, but when the government foots the bill, several issue arise that are vastly different from private insurance:
    1. we are ALL paying for her healthcare
    2. we are all just as much “entitled” (I won’t go into who is entitled to MediCal based on age or income, etc) to “staying alive” (God, I can’t even write the words without thinking about the BeeGees… TGIF)
    3. the government has deeper pockets than any private insurance company, increasing the potential of alloting Rivera a far greater amount of limited resources which otherwise could be used to help other deserving patients.

  35. joe,

    A little late, but I had to look up NHS…
    I guess, for the most part, we agree…

    I think it is the government’s responsibility to spend wisely… (ahahaha!!! comedy relief)… and I would rather see the resources spent on those who have a better chance of LIVING a meaningful life.

    Maybe I have been living in a third-world country, where resources a vastly limited and these choices are made without much thought… “hmm, give up a hospital bed, food, medicine, care, etc, to a permanently comatose patient or provide these resources to another patient? hmmm”

    Forgive me if I am callous.

  36. regardless of the “crocodile tears” smear of joe, who has a terrible habit of threadjacking with his vanity attacks around here, I’d appreciate some insight from anybody re: my 1:50 post.

  37. There isn’t some amount of money it has access to that it just chooses to take out of the health-care system.

    Oh, so profits that are paid out to the owners of healthcare businesses are “taken out of the healthcare system.”

    Of course, the money that those owners invested in their company would never have gone into the healthcare system without some return on investment. Those bastards! Investing in health care like that!

    Frankly, I can’t see any way to prevent the horrible evil of owners getting a return on their investment except a fully nationalized system.

  38. I think it is the government’s responsibility to spend wisely… (ahahaha!!! comedy relief)… and I would rather see the resources spent on those who have a better chance of LIVING a meaningful life.

    rana,

    Expecting the government to spend money wisely is laughable, but so is expecting it to make wise decisions in moral matters.

    I don’t want the government involved in my financial or moral decisions, but in this case, they are going to be involved in one or the other. So which decision is more important?

  39. To wit: do human beings who are mentally and physically unable to fend for themselves have positive rights to food, water and shelter?

    I kind of grind my teeth on either answer to this (if by “positive right” you mean “right to taxpayer funding” or “right to state coercion on their behalf”). I would like to say no, and point to the enormous amount of healthcare provided to poor people in this country by charitable/non-profit organizations, to say that such a society can be humane.

    OTOH, I’m not unalterably opposed to a “bare-minimum” safety net.

  40. Apparently, it’s better when the bureaucrats looking at the bottom line consider only the money, and there isn’t any provision made to take other values into account.

    Other values, like treating many disparate cases with an extremely high probability of recovery, versus expending the same, finite resources to prolong the illness of a single individual?

  41. TAO,

    re: your 1:50 post.

    I think that is the tough question – my thought is along the following lines – parents or guardians have a legal responsibility that they took up when they became parents or guardians to provide some minimal level of food/shelter/etc. to those in their care (whether children or disabled or in a coma). That may or may not be a “libertarian” position, but I refuse to treat children as property. They arent.

    What happens when said parents/guardians fail to meet their responsibility? Other than being arrested and/or having their parental status/guardianship stripped from them, Im not sure. At this point, my version of libertarianism would suggest they be taken care of by private charities. However, since the state is involved in taking the child away, do they (meaning: we) have to provide until some charity comes along. I have no doubts, based on history that private orphanages/homes would exist for 99% of these cases, but it still leaves questions about the occassional 1% who slides thru the cracks. Do we just call that regrettable human error?

    My general rule is to not to make sweeping generalizations based on cases outside of 2 sigmas from the norm (Example: if Im discussing abortion, I refuse to dicuss rape/incest/parital birth until the principle on basic abortion on demand has been reached). Thus, use the middle 95% as my guide, the answer is no, children and etc have no positive right to food/water/shelter/clothing.

  42. Death by dehydration is neither natural nor passive. It is an active (and gruesome) process willfully imposed by external actors, no different from putting a pillow over her face.

    It’s called “inanition” and I assure you, it’s considered a perfectly natural way to die.

  43. “Expecting the government to spend money wisely is laughable, but so is expecting it to make wise decisions in moral matters.”

    Absolutely agreed.

  44. This is why I break from my normally libertarian leanings on the euthanasia/assisted suicide issue. It’s far too easy for ‘I don’t think my life is worth living and want to die’ to become ‘We don’t think your life is worth living and want to kill you’.

  45. IIRC, the custodian discontinued her feeding because after consulting with her physicians, he felt her body was shutting down (organs beginning to fail)

    If your kidneys fail so you can’t eliminate the fluid coming in, and the doctors can’t restart the flow (no matter how many drugs they push), it is unethical to continue to push fluids and no reputable physician will do so.

    I didn’t see any evidence that the custodian EVER mentioned costs, just what was in the best interests of the patient.

  46. Tacos mmm,

    Ebola is a natural way to die as well. That a form of death is natural does not prevent it from also being gruesome, painful, and undignified, and also does not prevent those who bring it about from being inhumane brutes.

    If you don’t want to pay to keep a PVS patient alive any longer, the humane thing to do is to put a bullet to their brain stem, squish. It’ll be a lot less painful than dehydration.

  47. Why did the court-appointed county guardian change his mind?

    He is a physician and he concurred with five of Rivera’s treating providers that stopping the artificial nutrition and hydration was in her best interests.

    But during the course of the family’s litigation, the county guardian caved to temporarily permit a family member to serve as guardian for health care decisions. The court approved that agreement.

    Since the family offered no subjective evidence of Rivera’s preferences, the required and appropriate decision making standard was to do what was in Rivera’s best interests. The desires of Rivera’s family that she stay alive are irrelevant.

    It appears that the county guardian and the court abdicated their roles to act on behalf of Janet Rivera, in favor of a new guardian who, it appears, will not appropriately act on Rivera’s behalf.

  48. Whoa. This one sent me dashing to find my Advance Directive. I’m DNR, but need to have it tatoo’d to my forehead so as not to be resuscitated by EMTs. I’ll make sure our directives make it clear that IV hydration/nutrition are NOT permitted. That stuff’d wipe out our modest retirement funds in a NY second.

    BTW, I truly did die 6 times about 5 years ago. Heart stopped, brain stopped, dead. Not bad. Lights go out and all is black. Forget the white light and rerun of life history. I suppose that might happen in a prolonged (say an hour) death, but I was out for the count instantly.

    Had a dear, close friend who said he wanted to ‘grenade’ when he died. Car crash, gunshot to the head, fatal heart attack or stroke. He did… while enjoying dinner. I smiled, then called to express my sympathies to his family.

  49. It’s really only a matter of time before basic food and water is denied to people who are deemed not worth living, irrespective of their say in the matter. Just because someone who in the prime of their life directs that they should be kept alive when bedridden doesn’t mean that their wishes will be fulfilled.

    I’d mention an episode in history where the sick and people the state took care of were largely exterminated, in an attempt to cut back on “wasteful” spending, but then I’d be accused of a Goodwin moment. Still, it seems that history has to repeat itself. And of course, like all revolutions, this one will eat its own as well.

  50. The Dead Collector: Bring out yer dead.

    [a man puts a body on the cart]

    Large Man with Dead Body: Here’s one.

    The Dead Collector: That’ll be ninepence.

    The Dead Body That Claims It Isn’t: I’m not dead.

    The Dead Collector: What?

    Large Man with Dead Body: Nothing. There’s your ninepence.

    The Dead Body That Claims It Isn’t: I’m not dead.

    The Dead Collector: ‘Ere, he says he’s not dead.

    Large Man with Dead Body: Yes he is.

    The Dead Body That Claims It Isn’t: I’m not.

    The Dead Collector: He isn’t.

    Large Man with Dead Body: Well, he will be soon, he’s very ill.

    The Dead Body That Claims It Isn’t: I’m getting better.

    Large Man with Dead Body: No you’re not, you’ll be stone dead in a moment.

    The Dead Collector: Well, I can’t take him like that. It’s against regulations.

    The Dead Body That Claims It Isn’t: I don’t want to go on the cart.

    Large Man with Dead Body: Oh, don’t be such a baby.

    The Dead Collector: I can’t take him.

    The Dead Body That Claims It Isn’t: I feel fine.

    Large Man with Dead Body: Oh, do me a favor.

    The Dead Collector: I can’t.

    Large Man with Dead Body: Well, can you hang around for a couple of minutes? He won’t be long.

    The Dead Collector: I promised I’d be at the Robinsons’. They’ve lost nine today.

    Large Man with Dead Body: Well, when’s your next round?

    The Dead Collector: Thursday.

    The Dead Body That Claims It Isn’t: I think I’ll go for a walk.

    Large Man with Dead Body: You’re not fooling anyone, you know. Isn’t there anything you could do?

    The Dead Body That Claims It Isn’t: I feel happy. I feel happy.

    [the Dead Collector glances up and down the street furtively, then silences the Body with his a whack of his club]

    Large Man with Dead Body: Ah, thank you very much.

    The Dead Collector: Not at all. See you on Thursday.

    Large Man with Dead Body: Right.

  51. Food and water is food and water. Neither the family nor the facility should have any authority to deny it to an incompetent.

    Simple enough. Let the family feed and water her.

  52. Those who want to make this a cause celebre should put up or shut up. If it’s all about the state’s money, and the family wants to keep the woman alive, then surely a group of these concerned citizens, or wealthy individuals, can come up with the funds to continue life-support and care.

  53. Hey joe…where you goin’ with that feed’n tube in your hand?

    One could say that air isn’t medical care, either. I’m pretty sure putting sombody on a ventilator counts as medical care, though.

    Same thing.

    I disagree.

    Breathing is an involuntary organ function that isn’t prevented solely by the person’s state of consciousness.

    Conversely, feeding oneself is a “daily activity” that can be interrupted merely by one’s state of consciousness.

  54. Jammer | August 1, 2008, 11:54am | #

    “we’d be hearing about the faceless, heartless insurance company scumbags trying to maintain profit margins by offing the helpless.”

    Maybe… but a lot of that would come down to the contract. If the lifetime max payout was up it would be a nonissue (to me or I suspect the average Reason reader). If the insurance company was trying to cut payment before this was reached, then it would be a legit thing to ding them for.

    Anyway, this is another problem with government care. You get people working for the system trying to ration it on one side and then people on the other with hard cases who want unlimited resources for their problems (even, sometimes, unreasonably expensive things or drugs that hardly improve their odds).. It just sucks all the way around.

    I’d, personally, rather get screwed by myself [or my failure to buy enough insurance] than the state pulling my plug?. Or, on the other hand, bulk up on enough insurance to not have to worry about any plug pulling?

  55. Has anyone noted that Terri Schiavo was NOT on a respirator? Surely that’s an important distinction…..simple food and water are just not what most people think of when they hear the term “life support”. This lady is apparently on “life support”, but Terri Schiavo was not.

    Given what we now know about the brain activity of apparently “comatose” people, have they done any imaging, or tried this lady on a bit of Ambien to see what’s going on up there?

    If it was #1, or a loved one, it seems like most of us would want to have the docs actually do what they can to find out if anything is going on upstairs before they stopped providing us air, and ESPECIALLY before they quit feeding us!

    Maybe that’s just me.

  56. If Rivera’s care were being paid for by a private insurance policy or out of her family’s assets her case would not be a public issue.

    Family assets, sure. Private insurance policy? Not hardly. That industry is regulated to the hilt.

  57. When the images of Schiavo’s brain were released it was evident that there was no injustice occurring. I’d hope judges had learned something about PR from that.

    Most people are too smart to rely on family assets. They give everything away as they get closer to going into a nursing home so they can qualify for Medicaid. Even when the state takes a lien on their homes, they can’t exercise it while they’re alive and they stand empty sometimes for years and then the state recovers a third or less than what it has spent.

  58. I tried posting this earlier; if I’m duplicating…apologies.

    RC said:
    “Easily done. Appoint someone your medical power of attorney, with unequivocal authority to make decisions on your behalf if you can’t. Leave clear instructions on what you would want done.”

    Easily said, at least. Those decisions are simple to make when you are in good health, but don’t kid yourself that once you’ve made the decision–and told your family and put it in legal form–that you’re finished with the decision. If you’re the “cucumber in the bed”, someone else will have to make the decision. Sure, you’ve told them what you want and things are supposed to go your way–but medicine is rarely clearcut. Chances are there will be a gray area where your family stands around and tries to figure out what to do with you or for you. Sometimes you’re the guy on the respirator but still aware and making decisions about your own care. What then? Yep–you’ll be making those easy decisions all over again, though not so easy this time around.

    Anyone who thinks Advanced Directives are the answer has never sat next to a friend on the respirator and watched that friend make that decision for herself.

    As for the arguments about who should pay for what, I have no idea. It just bugs me that this discussion brings out the clowns who imagine that what they think at this moment will never change. Life is unpredictable.

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