Patterico's Pontifications

11/23/2009

Still More Doctors Amazed to Learn Patient in Persistent Vegetative State . . . Wasn’t

Filed under: General,Schiavo — Patterico @ 6:33 am

From the Daily Mail:

A car crash victim has spoken of the horror he endured for 23 years after he was misdiagnosed as being in a coma when he was conscious the whole time.

Rom Houben, trapped in his paralysed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them – but could make no sound.

‘I screamed, but there was nothing to hear,’ said Mr Houben, now 46, who doctors thought was in a persistent veg[e]tative state.

If there’s one thing I learned from the Terri Schiavo case, it’s that when doctors say you are in a persistent vegetative state, you are. No arguing, Mr. Houben. You’re supposed to be dead.

Doctors are never wrong. Except when they are . . . and then they’re shocked, stunned, and amazed.

73 Responses to “Still More Doctors Amazed to Learn Patient in Persistent Vegetative State . . . Wasn’t”

  1. From the article…

    About 20,000 are followed by a coma of three weeks or longer. Some of them die, others regain health. But an estimated 3,000 to 5,000 people a year remain trapped in an intermediate stage – they go on living without ever coming back again.’

    Supporters of euthanasia and assisted suicide argue that people who have lain in persistent vegetative states for years should be given the opportunity to have crucial medical support withdrawn because of the ‘indignity’ of their condition. But there have been several cases in which people judged to be in vegetative states or deep comas have recovered.

    Twenty years ago, Carrie Coons, an 86-year-old from New York, regained consciousness after a year, took small amounts of food by mouth and engaged in conversation. Only days before her recovery, a judge had granted her family’s request for the removal of the feeding tube which had been keeping her alive.

    aunursa (862c19)

  2. This brings to mind the peculiar (and awful) state of what’s known as “locked – in syndrome,” which was detailed in an amazing way from the writer of “The Diving Bell and the Butterfly.” The author found himself in this state for about 2 years, in which he discovered that he could communicate by blinking his eyes to his nurses. Using this excruciating method, he was able to write the entire book before he passed. Given the state of our technological advances in medicine, it seems that these types of situations will only be increasing in the near future.

    Dmac (a964d5)

  3. I can’t really imagine being in that position and not praying praying praying that someone would pull the plug. That’s the most horrifying story in the whole world ever almost. The only more horrifying one is that woman what stepped out of her car and got her face torn off by an insane chimpanzee. I dunno about you guys but I’m feeling like a very fortunate little pikachu this morning.

    happyfeet (b919e7)

  4. Without looking at what may have been written in the medical article, “locked in syndrome” as Dmac mentions is pretty much what it sounds like. see: http://www.merck.com/mmpe/sec16/ch212/ch212c.html
    (If link didn’t work, I’m happy if someone fixes it).
    Nothing new about the syndrome, having functional MRI’s that record brain activity is, though.

    While some in the “pro-euthanasia” movement will point out, rightfully, that this is only a minority of cases, it clearly demonstrates why we should be slow to withdraw treament unless adequate studies are done, and if people are trying to dispense with such for “practicality sake”, scream and run hard to a competant attorney.

    Of course, this does little in the face of those who would say, “But I wouldn’t want to live that way, anyway”, especially if they want to stand in the way of testing or appropriate counselling to someone found to be in such a state.

    While this is a significant additional fact to bring to bear in a situation such as Terri Schiavo, I think many of us would say that Schiavo was first a case about who was in a position to adequately be her surrogate in the particular situation.

    MD in Philly (227f9c)

  5. When I was a medical student, very early on we were told about a young woman who had spent several years in what was called “vigilant coma.” She was overcome by carbon monoxide and was being maintained in the neurology ward. After a period of more than a year, she completely recovered and then proceeded to tell her doctors about all the conversations they had held at her bedside describing her as a vegetable and what a waste of money it was to keep her alive. The moral of the story was about talking in front of patients who are alleged to be comatose. I have had patients tell me what I said during surgery when they were under anesthesia. Fortunately, because of the lesson from the young woman in vigilant coma, I have always been careful.

    Mike K (2cf494)

  6. I bet he heard all kinds of smack and whatnot over the years. You know there’s lots what are trying to remember what they said in that room.

    happyfeet (b919e7)

  7. oh. Which is almost the same as what Doctor Mike said except he had a moral.

    happyfeet (b919e7)

  8. I still don’t see how it’s not like being buried alive. Much worse than a coma. As I understand it, it’s irreversible front stem damage. Like MD in Philly said, what you want most is a good surrogate and a definite durable power of attorney for health care or a living will.

    nk (df76d4)

  9. Doctors,
    have there been any studies about the effects of Ambien on some coma patients … a few years ago there were reports that non-trivial numbers of PVS patients regained (temporairly) significant levels of consciousness when given Ambien.

    quasimodo (4af144)

  10. MD in Philly, in light of these numbers, I don’t think it really matter that it’s a minority of cases. It’s a staggering number of those suffering serious brain injury the mere possibility that there are many others trapped like Mr. Houbom is horrifying.

    Dr Laureys said: ‘In Germany alone each year some 100,000 people suffer from severe traumatic brain injury.

    ‘About 20,000 are followed by a coma of three weeks or longer. Some of them die, others regain health.

    It’s remarkable to read, too, that medical technology finally caught up with the patient and thus they were able to detect that he was indeed conscious. So if we end up with the government taking over our health care, will there still be the opportunity, financial resources, and push for advancements in medical technology – the very kind that allowed these doctors to discover the truth about Mr. Houbom?

    Dana (e9ba20)

  11. BTW this quote

    A car crash victim has spoken of the horror he endured for 23 years after he was misdiagnosed as being in a coma when he was conscious the whole time

    can make us leap to conclusions. Please click on Patterico’s link for the whole story.

    nk (df76d4)

  12. It is like being buried alive in a way, but you don’t have to worry about suffocating or being isolated from everything except from your own thoughts (at least if you have careful care-givers who are willing to look to see if your eye lid blinking is purposeful).

    Almost sounds like there is a new need, professional surrogates who can carefully interview a person and document one’s wishes- someone who needs both medical and legal understanding.

    MD in Philly (227f9c)

  13. Quasimodo – Ambien makes people do some pretty funky things.

    JD (ce39ff)

  14. You are right about Ambien, JD. Dennis Miller tells this great story (he is a nervous flier, like me) about taking an Ambien on a trans-Pacific flight.

    When he woke up, he didn’t have his shirt on, and couldn’t find it.

    I have also heard of people on Ambien doing “sleep eating” in the fashion of sleep walkers.

    Hmmm..

    Eric Blair (bc43a4)

  15. There was a paper in a medical journal written by three neurologists who had attended a meeting in Europe and took a sleeping pill ( I can’t recall if it was Ambien, I think it was Dalmane). When they got home, they couldn’t remember anything that took place at the meeting. It was permanent loss of memory.

    Mike K (2cf494)

  16. The horror of what we did to poor Terry Schiavo as a society – just floors me.

    If she was congient the whole time her last moments must have been beyond words

    EricPWJohnson (403cb1)

  17. I gotta say comas and coma-like states are strange creatures. Ya never know what might happen. Kinda like that Robin Williams movie “Awakenings” (I think it is) dealing with people who were “catatonic”. There is no way mankind will ever fully understand the human brain.

    I have a cousin who, as a youth selling greeting cards door-to-door, tried to cross a 2-lane highway. He was bounced from one 55-mph car’s windshield across to an oncoming 55-mph car’s windshield. As a result, he was comatose for weeks or months (I can’t remember). But he has a big dent in his head 30 years later.

    Comas, coma-like states, catatonic-like states, suchlike… I doubt we’ll ever have the technology to understand it all.

    John Hitchcock (3fd153)

  18. The moral of the story was about talking in front of patients who are alleged to be comatose. I have had patients tell me what I said during surgery when they were under anesthesia. Fortunately, because of the lesson from the young woman in vigilant coma, I have always been careful.

    Good advice, Mike. Thanks. It also speaks to the value of people who have conversations with their loved ones in comas and who pray with them. Even if you think they can’t hear, it’s worth it. Knowing that they possibly can — all the more reason.

    Myron (6a93dd)

  19. I had an experience with Ambien I won’t forget. It is a memory about forgetfulness. 😛

    I have had sleep issues from time to time, some of which were scary for my then-pre-teen daughter. I consider those issues a result of heavy stress combined with sleep deprivation. (I have always had a lot of stress and an active mind, so I have always had difficulty actually going to sleep.)

    Anyway, I would snore loudly and then suddenly stop snoring. It was because I was holding my breath in my sleep. Not because I couldn’t breathe but I “chose not to breath” somehow. Even in my “awake” time when I was totally out of it, I would find myself holding my breath.

    I went to a sleep specialist about it and had a sleep study done. Of course, it was done on Friday and I didn’t “have to be awake” at any time, so the stress level was automatically reduced. His decision? I don’t have sleep apnia and I need to quit drinking caffeinated beverages. Oh, and here’s some Ambien for now.

    Caution: When taking this medicine, be certain you have 7 hours devoted to sleep or you may suffer memory loss (and whatnot). Well, I would go to work after having 6-ish hours of sleep. I would look someone I have been working alongside for 8 years straight in the face and totally space out on his name.

    I no like Ambien.

    John Hitchcock (3fd153)

  20. Nor do I – had the worst series of nightmares in my life when they gave it to me one time while in the hospital. When I described the situation to my nurse, she blithely smiled and said that “it happens all the time with that pill.” So they gave me something else – didn’t matter, you never actually sleep in a hospital.

    Dmac (a964d5)

  21. Given the state of our technological advances in medicine, it seems that these types of situations will only be increasing in the near future.

    More likely decreasing, due to advances in cyborg technology.

    Michael Ejercito (6a1582)

  22. Mike K, in a bar full of MDs, I was mistaken for one of the select and included in the general conversation. Since it was their mistaken assumption, I let it ride. Truth is I was a bit flattered.

    The next hour or so was quite an eye-opening experience. Mostly surgeons working on cancer patients, the things they said about fat people were decidedly unflattering. By the second round, chit-chat gave way to a lively game of “ain’t it awful.”

    Most informative was the highly negative opinion of the disproportionate application of vast medical services to extend the lives of old people for a few weeks or months. Informal estimates reached as high as 85 to 90% of their time and resources practically squandered in order to buy a little more time for bedridden individuals clearly beyond any hope of recovery.

    Lacking an example from my own experience, I told a few jokes, picked up the tab for my table, and departed unexposed as an outsider, but convinced I got fair value for my money.

    ropelight (567018)

  23. Most informative was the highly negative opinion of the disproportionate application of vast medical services to extend the lives of old people for a few weeks or months. Informal estimates reached as high as 85 to 90% of their time and resources practically squandered in order to buy a little more time for bedridden individuals clearly beyond any hope of recovery.

    What proportion of medical costs are spent on old people?

    Michael Ejercito (6a1582)

  24. > If there’s one thing I learned from the Terri Schiavo case, it’s that when doctors say you are in a persistent vegetative state, you are. No arguing, Mr. Houben. You’re supposed to be dead.

    I cannot speak for Mr. Houben, only for myself, but, frankly, if I’m in that condition for six months with no particular expectation for recovery, then TURN OFF THE MACHINES.

    I can think of few hells more horrifying than being trapped, unable to move, to communicate, to do ANYTHING but lie there, indefinitely

    That we are rich enough to pointlessly keep someone alive in our society, despite the fact that the expense bears little opportunity to be justified on a societal level, based on the literally sick extremist notion that “life is beyond sacred, no matter the conditions under which it is experienced” is unfortunate.

    The current condition is the aberration — we have gained the ability to keep people alive, far, far longer than nature would ever have had them survive, via machines and sufficient wealth to withstand the expense of doing so with no return likely. It is by keeping people alive under such conditions that one is acting as God, not by allowing nature to take its true course.

    I believe that one should state one’s preferences in a legal manner, sure — if someone believes they would rather lie there indefinitely in the hopes that maybe they’ll regain some semblance of existence later, that’s expresses their choice — but, lacking that, turning off the machines is more likely to be an act of mercy, not an act of Godlike presumption.

    That so many miss this, and somehow think that, just because we have the power to extend life indefinitely that we should do so, that we MUST do so, no matter the conditions under which it may take place, out of some misguided interpretation of the sacredness of life, lies beyond the pale.

    OBloodyhell (811125)

  25. “beyond the pale” ?

    No, you’re the one being insane and extreme here. Keeping someone alive because there’s a not insignificant chance they can recover is simply a valid view.

    There are a variety of valid views on this.

    You don’t get to decide whether the view you disagree with is based on insane ideas. Some people want to preserve these lives in an effort to improve our medicine and heal these people. That’s not playing god, that’s playing man, because man has been defeating nature, one inch at a time, for thousands of years, and that’s exactly what we ought to be doing.

    Of course most medical care is spent on old folks… that’s when we need medical care.

    Dustin (cf255c)

  26. Whether or not Ambien or medicines like it do strange things to normal people is irrelevant to my question. it has been discovered that giving Ambien to people diagnosed as being in a permanent vegetative state can return them to consciousness. It kinda screws up our decisions to stop feeding and stave them to death … they were unlikely to be attached to machinery other than food & hydration. Starving anyone to death is no act of mercy.

    quasimodo (4af144)

  27. Dustin

    If you keep making just plain old fashioned common sense – you maybe asked to leave…

    EricPWJohnson (403cb1)

  28. Dana, I agree with you. I was purposefully giving some ground to the critics to still point out the reality, taking the thunder out of the, “but wait…”.

    OBH- I think most of us here are not of the “since we can we should” reflex. I believe what the majority here want is:
    1. someone making the decisions who cares about the person more than the inheritance or whatever other secondary gain motives, as was a major problem with Schiavo
    2. not letting medical staff project their opinions onto their patients who can’t speak for themselves
    and,
    3. Professionals not being pompous know-it alls who say things like “never” and “always” when it isn’t quite like that.

    In my experience, there are often times when the docs want to make an “all or none” push on a patient or family, often primarily to make things easier/more “cut and dried” for the staff. I think more discussion with the patient and family, coming to an understanding of what makes sense to offer in “giving the patient the opportunity to pull through if they can” and a resulting contentment knowing that nobody “gave up”, but the emphasis is then on “the person was too sick to pull through”. Unfortunately, the more medicine has fallen to be being a business, the less valuable talking to the family seems to be. happy to hear what Mike K. might add.

    Ambien- if using it, at least lock the fridge before you go to bed.
    I think there is a case report of someone getting in the car and driving and waking up later, not sure how they got to where they were.

    MD in Philly (227f9c)

  29. You bring up Schiavo—where the doctors were right. This does not help your case.

    technomad (0b1234)

  30. Comment by OBloodyhell — 11/23/2009 @ 9:23 am

    I thnk God you’re not a member of any military Medical Corps!

    AD - RtR/OS! (222944)

  31. Comment by technomad — 11/23/2009 @ 11:33 am

    I’m not sure you have understood the flow of this discussion. Especially if you are responding to my post at #28.

    MD in Philly (227f9c)

  32. Hmmmm… (that’s to simulate thoughtfulness)

    I have been involved with too many critical and final illnesses to count. (Well, I could count them I suppose if I could remember them all. But suffice to say, quite a few. Say… over 200?) And I rarely, and I mean r-a-r-e-l-y run into the keep-them-alive-at-all-costs thing. I don’t know what kind of hospitals you guys have visited, but I have found doctors much more likely to be like those guys in the bar, figuring that this patient isn’t worth all the effort.

    Of course, if the patient is 14 years old, then they’ll move heaven and earth and spend the national budget.

    Personally, I think that anyone who starts picking which lives are worthy of treatment and which ones are not has turned onto a very bad, bad road that goes to no good place. I think that people are worth caring for because they’re people. And we should do it because it’s the right thing to do.

    Sometimes we (meaning the family and close loved ones, and hopefully not anyone who stands to gain a suspiciously great amount of money) will have to make a hard decision – in the effort to treat a person appropriately. It might mean keeping the patient on a respirator, which seems like torture. Or it might mean weaning them off of a respirator because it seems to us, operating on the best information we can gather, that further treatment will not help the person to get well. But it will almost never (except in the last stages of dying) mean discontinuing food and water (as they did to Schiavo).

    That’s my 2 cents and then some.

    Gesundheit (cfa313)

  33. Mark Kleiman on the Texas Futile Care Law (and Schiavo)

    “Nonetheless, if the distinction among the cases is so fine-grained, it’s hard to credit the sincerity of people who throw around terms such as “murder” and “Dachau” when talking about Schiavo but make no objection to the Texas law, especially since the Texas law specifically lists “artificial nutrition and hydration” as among the services that can be discontinued.

    Moreover, the law allows for… the termination of life-sustaining treatment for patients with “irreversible” conditions (i.e., conditions from which they will not recover and which leave them unable to care for themselves) even if their higher brain functions are completely normal. Indeed, the law contemplates that a fully competent patient may be served by his health-care provider with a 10-day notice to find another provider or have his plug pulled; it even provides that the patient has the right to attend the committee meeting at which his fate is to be decided. (Sec. 166.046) And the law provides no substantive guidance other than the provider’s decision that the requested life-sustaining care would be ‘inappropriate.’ ”
    samefacts.com/2005/03/schiavo/schiavo-hudson-and-nikolouzos/

    bored again (d80b5a)

  34. Here’s bent-over-in-front-of-Sullivan-again to throw a look-over-there at us again. Hey creepo, I blogged against Texas’s euthanasia law four years ago. Go back to cruising rough trade.

    nk (df76d4)

  35. Moreover, the law allows for… the termination of life-sustaining treatment for patients with “irreversible” conditions (i.e., conditions from which they will not recover and which leave them unable to care for themselves) even if their higher brain functions are completely normal. Indeed, the law contemplates that a fully competent patient may be served by his health-care provider with a 10-day notice to find another provider or have his plug pulled; it even provides that the patient has the right to attend the committee meeting at which his fate is to be decided. (Sec. 166.046) And the law provides no substantive guidance other than the provider’s decision that the requested life-

    Whose decision would it be to terminate?

    Michael Ejercito (6a1582)

  36. Dustin @#25:
    No, you’re the one being insane and extreme here. Keeping someone alive because there’s a not insignificant chance they can recover is simply a valid view.

    Yes, by all means, torturing someone because you have the power is a totally valid view.

    A rather sick, demented one, but sure, it’s valid.

    I do take issue though, with the corollary notion that it is in any way sane or unextreme.

    I more than concur, if someone expresses a desire to be “kept alive at all costs” then that wish should be followed within reasonable limits.

    Lacking it, I would prefer to err on the side of caution, and not likely torture them for decades.

    But that’s just me having compassion that outranks any questionable religious interpretation which was never meant to deal with modern technology’s possibilities, at least as far as I can see. I see little mention in the Sermon on the Mount, or Corinthians, regarding resuscitation, intravenous drip feeds, heart lung machines, and things like that.

    And, unlike most, I have true faith in God — if He doesn’t want them dead, things will happen to prevent them from dying, regardless of what we may choose to do. He’s funny that way.

    > Some people want to preserve these lives in an effort to improve our medicine and heal these people.

    Thank you, Doctor Mengele.

    > That’s not playing god, that’s playing man, because man has been defeating nature, one inch at a time, for thousands of years, and that’s exactly what we ought to be doing.

    Not at that price, sorry. Planning to re-open Tuskeegee, are you?

    Hey, it’s for the good of everyone but the patients!!

    > Of course most medical care is spent on old folks… that’s when we need medical care.

    ??? WTF does THAT have to do with anything I’ve mentioned?

    MD @#28:
    > 1. someone making the decisions who cares about the person more than the inheritance or whatever other secondary gain motives, as was a major problem with Schiavo

    No doubt, in principle — Who you figuring is going to be better? The Government? Do you REALLY want to give them that power? Because once you give it to them, don’t count on ever, ever getting it back.

    Me, I’d trust a lot more a living will expressing my own feelings in that overall event. But if anyone’s going to err, I’d prefer it be the one which doesn’t have me trapped inside a useless, immobile body for a decade and more.

    Further, I also happen to know a little bit about the human body — once it’s been sitting there, largely functionless and immobile for a decade and more, it’s got little chance of picking up where it was. When they speak of “full recovery”, I’d damned sure like to know what is defined as “full recovery”, because I suspect his mobility after all that time is going to be severely impaired by the atrophy of muscle tissue, which I haven’t heard has a solution at this point in time. It’s a major problem for people who have had nerve damage eliminate their ability to move their legs — even if the nerve damage is repaired a decade later, chances are the lack of moving their legs has resulted in such a severe atrophy of tissue (even with steady therapy) that they still won’t be able to walk. Chances are etter if they are young, but once you get past a certain age, your best hope is probably a wheelchair. That might be acceptable to some, but the prospect of being trapped for decades in a suddenly useless body, possibly to be followed, IF I come out of it, by a remainder in a wheelchair doesn’t strike ME, personally, as all that appealing. If there’s no clear prospect of coming out of it inside of a year, then turn off the machines (and again — if you’ve publicly expressed differently, then, by all means — follow that expression rather than the above presumption).

    Also: If you do advocate the Government Solution — are they going to take over paying the bills if they disagree with the family?

    > 2. not letting medical staff project their opinions onto their patients who can’t speak for themselves

    Medical staffs will always do this, as will any professional in any field (even non-medical ones), to some extent. If you imagine otherwise, then you’re a fool. Hell, they are EXPERTS, that’s why their opinions are worth more than some idiot on the street corner, and why you ask them and not said idiot.

    The only solution is the due diligence of any consumer — get multiple opinions from unrelated sources (i.e., don’t ask the professional to recommend someone else for a second opinion, go out and find one independently from that individual)

    > 3. Professionals not being pompous know-it alls who say things like “never” and “always” when it isn’t quite like that.

    See above about being a diligent consumer. One hopes that you’ve already spotted such a butthead before you even get them on your case at that late a point.

    > the docs want to make an “all or none” push on a patient or family,

    a) Once more — “due diligence”
    b) Grow a spine. Stop being a sheep. Make up your own mind, even when it’s a hard choice.

    Ad @#30:
    > I thank God you’re not a member of any military Medical Corps!

    Define the scenario, then we can talk. Field triage one makes that kind of choice constantly as a matter of necessity. And frankly, anyone who goes into a high-risk profession like Fireman, Police, or the Military who hasn’t made their wishes sufficiently concreted that everyone knows what they want (in which case my own comments have no relevance of any kind), then they’re idiots.

    Ges @#32:
    > Personally, I think that anyone who starts picking which lives are worthy of treatment and which ones are not has turned onto a very bad, bad road that goes to no good place. I think that people are worth caring for because they’re people. And we should do it because it’s the right thing to do.

    Look, I know we’re all trained to the idea that “life has no value” — well, yeah, it does. It always has. And that value is derived from two factors:
    1) Money isn’t an object. It’s a concept. And at the heart of that concept is that it is something I’d suggest be thought of as Crystalized Human Time. Every single “dollar” of wealth anywhere on this planet is a stand-in for someone’s time. Every one of them. So money CAN be equated with someone’s remaining lifespan.

    2) From “1”, it is clear — at some point, the expenditure of other peoples’ lifespans will become disproportionate with the remainder of the patient’s life. If a doctor has to spend the entire remainder of their 40 year career to add 10 weeks to the lifespan of a single 70yo, does that make any rational equation? If a child has to put themselves into debt for 20 years to add one month to the lifespan of their parent, is that a reasonable thing to demand? Not ask, not choose — demand.

    3) We’re comfortable with the notion of putting some of our spans at risk — we have no problem with this headline: “Three die attempting to save drowning boy”. And that’s GOOD — because it shouldn’t be a cold calculus equation, “A==B”. But at some point, it stops being a sensible equation: “1000 people die attempting to save drowning boy”. Too small? “One million die attempting to save drowning boy”? At some point, one is going to be a bit cold — “Sorry, let him drown, it’s not worth the risk or loss” This is a common failure of libtards, guys — they want to look only at one side of the equation, and ignore the other side of it. So we wind up with hysterical idiots deciding for gun control because some school got shot up by a lone lunatic, utterly ignoring the other side, which is all the people saved by guns unnoticed. That’s basically how both the UK and Australia got their severe gun control laws — two incidents, Dunblane in Scotland, Port Arthur in AU, propelled the passage and seizure of virtually all legal guns.

    My point here is that money IS a valid part of the equation — every dollar spent to prolong someone’s life is a dollar’s worth of someone else’s time doing that which is needed to do it. There are equivalences possible there which rather clearly aren’t valid.

    > which seems like torture

    You are free to have your own definition of torture… but mine certainly includes locking someone in a room, strapped motionless to a bed with a TV in sight where they can watch everyone and everything around them, but do nothing of any kind to interact with them, feeding them intravenously so they cannot die a natural death.

    That sounds positively worth of Edgar Allan Poe, to me.

    > But it will almost never (except in the last stages of dying) mean discontinuing food and water (as they did to Schiavo).

    You know, if it’s something to do EVER, then you’re just making excuses when you’re claiming there are “some” circumstances under which it’s “acceptable”.

    I personally suspect that, if there was any consciousness still attached to Ms Sciavo, she was probably so busy screaming in her head, “THANK YOU THANK YOU THANK YOU” that she probably wasn’t having a problem with being hungry or thirsty.

    Speculation on my part, I grant, but the point is, you’re so busy sidestepping the heart of the matter that you don’t see, or don’t want to see, it.

    You are very busy tap-dancing around the issue, which is that, if someone IS trapped in there it is an act of supreme, utterly heartless cruelty to force them to live in that state, without express prior indication that they would wish to do so.

    OBloodyhell (811125)

  37. Even with the Crystalized Human Time concept in the mix I fear consensus remains elusive.

    happyfeet (b919e7)

  38. I didn’t read OBH’s comment, which I am sure is pretty understandable, as it’s over a dozen pages long, but I did catch the bit at the end about how we are forcing people to stay alive.

    No we aren’t. Take responsibility for yourself. Whether you agree with this or not, make sure your wishes are known. If you take no measure to have your wishes known, it’s your own fault if what happens to you is not your preference. No one is forcing anything.

    One of those options really ought to be to permit doctors to push the envelope in trying to revive you, and donating your carcass to science if they fail.

    Dustin (cf255c)

  39. OBH argues very elegantly really. It’s worth reading. He kind of reminds me of Mr. SEK. I haven’t checked in on Mr. SEK lately.

    happyfeet (b919e7)

  40. Sadly, OBh invoked Godwin’s Law … and then tossed in Tuskegee for his (her?) own reasons …

    Alasdair (205079)

  41. It was neat to learn about how the Australian ones lost their rights to bear arms. Australians are a happy folk. Very easy to like. here… you can tell. I imagine they get more than their share of being taken advantage of.

    happyfeet (b919e7)

  42. Obloodyhell:

    I personally suspect that, if there was any consciousness still attached to Ms Sciavo, she was probably so busy screaming in her head, “THANK YOU THANK YOU THANK YOU” that she probably wasn’t having a problem with being hungry or thirsty.

    Where do you draw the line? Does your theory apply to only the mobility-impaired, the brain-injured, or should a candidate be both to be expendable? What about people who can move and think but have an incurable disease — should we put them out of their misery, too?

    It sounds like you are arguing for euthanasia and there are reasons for and against the practice. But is euthanasia a valid choice to make for someone else when you don’t even know their mental status, let alone what they would choose?

    DRJ (dee47d)

  43. The Netherlands and the elderly afraid to drink their orange juice for fear of being euthanized?

    John Hitchcock (3fd153)

  44. Progressives have traditionally opted to put down humans who have no way to defend their lives or usefulness.

    Eugenics equates human life to dumb animals. A dog is cat is a rat is a boy, or girl. Just kill the ones that can’t contribute to the collective.

    obloodyhell is no different. It’s just the latest.

    Ag80 (3d1543)

  45. Michael Shermer points out that the typing that the coma victim is doing appears to be a case of Facilitated Communication.

    Christian (b3503d)

  46. Watch the video and watch who is doing the typing. The brain scans and other misdiagnosis are still true, but it doesn’t look like the statements that are claimed to be coming from the man are legitimate.

    Christian (b3503d)

  47. I’ll respond to those points made in reference to my post(s).

    First, I’m not sure if you are reacting to what I was trying to say, or what comes to your mind when you see a phrase, for it seems you spend a lot of time reacting against things I would never agree with.

    “MD @#28:
    > 1. someone making the decisions who cares about the person more than the inheritance or whatever other secondary gain motives, as was a major problem with Schiavo”
    No doubt, in principle — Who you figuring is going to be better?

    The rest of your dialogue on this is pretty tangential to what I was saying. I think a private individual who has the person’s best interests in mind is appropriate. In the case of Terri Schiavo, there was plenty of evidence to suggest her husband had motives more of his convenience and benefit than concern over his wife. It would have been appropriate, I think, for this to have been a/the major point of legal challenge, but I don’t think technically it was (could be wrong).

    “2. not letting medical staff project their opinions onto their patients who can’t speak for themselves”
    Medical staffs will always do this, as will any professional in any field (even non-medical ones), to some extent. If you imagine otherwise, then you’re a fool. Hell, they are EXPERTS, that’s why their opinions are worth more than some idiot on the street corner, and why you ask them and not said idiot.

    FYI, “MD in Philly” means I am a physician in Philly, not someone with the initials MD or from Maryland.
    Getting the educated opinion of an expert is one thing, letting one’s prejudices subconsciously alter their judgement is another. The later is what I mean by the term “projection”.

    > 3. Professionals not being pompous know-it alls who say things like “never” and “always” when it isn’t quite like that.
    See above about being a diligent consumer. One hopes that you’ve already spotted such a butthead before you even get them on your case at that late a point.

    Unfortunately I think it is hard to be a “diligent consumer”. Pres. Obama was elected because the majority of Americans are not. He sounded nice and people on television said so too, and they voted for him. Had they really understood who he is and what his views are I don’t think he would have been elected.

    “> the docs want to make an “all or none” push on a patient or family,”
    a) Once more — “due diligence”
    b) Grow a spine. Stop being a sheep. Make up your own mind, even when it’s a hard choice.

    Yes, that’s what I do when physicians prefer to “write-off” family members in the ER than think 2 minutes. Fortunately, I can make that happen speaking up as a doctor. Unfortunately, non-doctors have a much harder time of it, and when they do they often get labelled as “problems” rather than someobody making the effort to listen to their concerns.

    I was speaking to the responsibilities of health care workers as a health care provider. Patients and their families have rights and responsibilities, true, but that does not relieve professionals of theirs.

    MD in Philly (227f9c)

  48. Back in the day when lawsuits were rare, most medical care was under the direction of doctors. Nowadays the Lawsuit Lobby has scared most hospitals into doing everything they can to keep from being sued. This more than any other one factor leads to extraordinary measures to keep dying people alive.
    My father was a doctor and used to tell me stories of how old people faded off when they stopped eating. The medical staff would provide water and basic care, but no machines, because a lot of them didn’t exist yet. We could do the same thing today if the Tort Lawers would let us.

    tyree (124934)

  49. “…Where do you draw the line?…”
    Comment by DRJ — 11/23/2009 @ 9:38 pm

    Well, if they’re a registered Dem, or have contributed to ACORN, etc, works for me (sarc)!

    AD - RtR/OS! (8bd229)

  50. As far as the Aussies go, you could ask the guy they based Crocodile Dundee on — clearly a strong-willed, capable, and determined individual able to stand on his own two feet… the kind of guy you want at your back in a crisis — about what he thinks of Australia these days.

    Oh, wait, no you can’t. They killed him. Drove him nuts, and shot him dead after he acted in defense of his rights. Not much on that in the news outside of Australia, though.

    ==========================

    HF @#37:
    > Even with the Crystallized Human Time concept in the mix I fear consensus remains elusive.

    Of course it does — every person will have their own weighting factors — but I think it helps a lot in grasping that the claim of “you’re assigning a monetary value to a human life” is crap — in the end, the two constructs are intimately related. Certain groups just don’t grasp that idea, since it prevents them from justifying their thefts of same. It IS appropriate to “assign a monetary value to a human life”. What we need to do is to grasp the full context in which that value is to be set.

    Dustin @#38:
    > No we aren’t. Take responsibility for yourself. Whether you agree with this or not, make sure your wishes are known. If you take no measure to have your wishes known, it’s your own fault if what happens to you is not your preference. No one is forcing anything.

    but then he says:
    > I didn’t read OBH’s comment

    Gimme a break. Stop trying to argue against a single statement without grasping the context in which I made it. Stop playing with your Wii long enough to get an attention span.

    This is not a trivial concept and it’s not going to be resolvable by statements that fit on bumper stickers.

    Many of the chief hot-button issues of The Right — abortion, euthanasia, etc. — tie to the essential question of “What constitutes human life?”. Most people on the right want to be able to answer this difficult and very complex question the same way that libtards want to solve all their problems — with a single, all-encompassing (usually stupid) statement that will fit on a bumper sticker.

    Hint: If your entire justification for solving a complex issue fits in a single sentence, chances are, you don’t understand the problem

    Further — if you had read my comment, you would note that I did, indeed, make this a part of what I said — but in the end, you have a person who is incapable of articulating their wishes, and you are using a standard of “all life is sacred, no matter the condition/situation under which it takes place” as a justification for maintaining them alive.

    Because YOU are maintaining them alive — not nature. Nature would have killed a person in a vegetative state inside of weeks, without someone taking active, conscious measures to prevent that from occurring. Does that mean we should always let nature run its course? No, of course not — but at some point we should be asking a very reasonable, mature, and responsible set of questions — is this person ever going to regain a “useful” life (as in “functional”, where they are not utterly depended on people to wipe their asses and feed them — where they can contribute something to society and have a decent feeling of self-worth?)? Are we possibly torturing them in order to preserve that option? Does society owe any person so much that they should spend 200 man years to save 30 or so of the patient’s? Can/should we force those who will do so to do so?

    I mean, in the end, if life’s value, in terms of prolonging it and preventing its termination is beyond limit, it means we should be able to force a doctor to work for free to save that person’s life, should we not? I think that’s usually called “slavery”, but you may have a different definition.

    And if it’s paid for by The State, then we’re just doing a nickle-and-dime variant of it — we’re stealing/enslaving people peacemeal — an hour at a time — in order to produce the wealth needed to “save” this person’s life. Because, as P.J. O’Rourke notes, that’s what taxes really are — the collective deciding that everyone in the collective will give up some piece of their life towards a goal. And they do so at gunpoint… It’s paid for by taxes. If you don’t pay your taxes, someone comes to take you off to jail, and/or to seize your property to pay for your taxes. If you resist, they will certainly jail you, and may shoot you D-E-A-D dead. So, at any point, one should be considering: “Would I think this is something worth killing someone over?” Because, in the end, that IS what you are doing with taxes — killing them a tiny bit, by stealing away that which they’ve spent their own limited time on this planet creating/earning.

    DRJ @#42:
    > What about people who can move and think but have an incurable disease — should we put them out of their misery, too? What about people who can move and think but have an incurable disease — should we put them out of their misery, too?
    And
    > But is euthanasia a valid choice to make for someone else when you don’t even know their mental status, let alone what they would choose?

    And,
    a) At what point did you read into what I said a total ignorance of the fact that this is about people who are utterly incapable of expressing their own wishes?, and have, unfortunately, failed to do so when they had the chance. If you read what I said (and clearly, few of you actually did, figuring you could skim it and understand it — YOU CAN’T), then you would know that I concur, if someone HAS expressed their wishes, and/or is capable of articulating them, then there is a clear moral obligation to attempt to follow them within the limits of society’s own interests.
    b) A decision HAPPENS either way…. or did you MISS that blatantly self-evident part in your all-encompassing obliviousity?
    c) I find it succinctly interesting how NO ONE arguing against this position wants to face the fact that it may well constitute a truly horrific form of torture to keep these people alive. Yes, **Keep** You just handwave right past that part, like it was a trivial thing. IT’S NOT TRIVIAL. It’s at the HEART of the issue.

    And, in case it wasn’t clear, I do believe in voluntary euthanasia — if a person does not feel their life as a quadriplegic is worth living, then it is not society’s purpose to force a continued life upon them. You do have an obligation to ascertain that they ARE of sound mind and capable of making a rational decision, but no, the idea that life in a specific condition isn’t worth living is not, in itself, a sign of an unsound mind.

    As to the moral and religious implications, that’s between the individual and God — not you, not me, not society.

    Once more — I have faith in God… if He really doesn’t want the person making that choice, He will be quite capable of giving them another view, if they are open to alternatives. And it’s still, in the end, a matter of Free Will. God gave us that for a reason. It is amazing to me how few people really respect that decision of His.

    Arg @#48
    > Progressives have traditionally opted to put down humans who have no way to defend their lives or usefulness. Eugenics equates human life to dumb animals. A dog is cat is a rat is a boy, or girl. Just kill the ones that can’t contribute to the collective. obloodyhell is no different. It’s just the latest.

    Ah, me. Name calling. “He’s a ‘progressive’, so we don’t need to listen to him”. You’re a moron studying to be an idiot, and failing. How are you any better, in any way, shape, or form, than some idiot talking head on CNN dismissing you as a “teabagger”? Shame on you, just for that alone.

    Second, idiot, I’ve NEVER been anything vaguely “progressive”. Not even in high school, at my most inexperienced — I was the guy who stood up in Humanities class and argued consistently against all the proto-libtards around me in favor of those positions which nowadays constitute “conservative”. And this was long before anyone ever even conceived of Alex P. Keaton. So, as politely as possible: Osculate My Posterior

    If there is any ideal I can be “shoehorned into” it would be small-l libertarian. And you might, if you had any brain at all, see where that fits into my arguments — someone is making a decision. And it should be done on as personal a level as possible. Sometimes that’s going to be in contest with the motivations of the family, but, in the end, it still needs to be kept at that level. I sure as sh** don’t want the Government deciding on it.

    All YOUR claims do is stamp you as an unthinking fool who has followed the mantra you’ve been told to say — blah-de-blah-blah. You’re no better than any libtard imbecile reeling off his anti-Palin anti-Rush anti-Fox News talking points.

    Either defend your positions with facts and reason or sit down and STFU, you’re adding nothing valuable to the discussion.

    Alas @#40:
    > Sadly, OBh invoked Godwin’s Law … and then tossed in Tuskegee for his (her?) own reasons …

    OK, here’s a secret: You don’t get to write off an argument by Godwin’s law when someone DOES express something that is positively Nazi-ish.

    The Doctor Mengele reference IS perfectly apt, and WAS offered with a specific connection to a statement someone said which could easily have been used as a justification by Mengele. And if you don’t grasp the Tuskeegee significance in relation to, once more, the quoted expression that preceded it (most especially since I “boiled it down” right after that), then you really, really need to work on your reading comprehension skills.

    OBloodyhell (811125)

  51. With all due respect, why are your comments so bloody long?

    Is it really so hard to articulate your simple ethical view in less than 1500 words?

    I glanced at it and see you’re calling those you disagree with ‘libtard imbeciles’, ‘idiot’, and telling people to ‘stfu’. You use allcaps, bold text and a fourth grade vocabulary.

    It doesn’t look like you even have any new points. You’re just rambling about how holy you are, and how everyone else is really bad. That’s not a good use of your time. I don’t care what kind of life you lead, this is simply a waste of it.

    Dustin (cf255c)

  52. Just another recycled troll who is searching for acceptance.

    AD - RtR/OS! (8bd229)

  53. I happened to have Ms Word open, and OBH’s comments are, put together, about 20 pages long.

    And all he’s doing with this opus is calling everyone idiots, and repeating his extremely simplistic euthansia stance. He thinks it’s really darn bad to let people live without their consent, but he spends hour upon hour writing about something else entirely: how great OBH is and how those who are actually digging into this interesting ethical dilemma are really ‘imbeciles who should stfu’.

    In his latest rant, he tries to pass himself off as a concerned conservative. He’s clearly a moby who is completely pathetic.

    Dustin (cf255c)

  54. MD @#47:
    > The rest of your dialogue…(snip)… but I don’t think technically it was (could be wrong).

    The problem is that you seem to want a case-by-case application of the law. That’s not how the law works. If you don’t allow the family the power to make the decision, then you are putting it into someone else’s hands. Always.

    > Getting the educated opinion of an expert is one thing, letting one’s prejudices subconsciously alter their judgement is another. The later is what I mean by the term “projection”.

    Actually, I presumed you were an MD. That doesn’t change the fact that experts cannot help but approach anything that’s not a clearcut, technical assessment without bringing their own baggage and viewpoints into it — and it’s rather obvious that this issue is far more philosophical in nature than it is medical. The doctors can give you rational assessments of the chances of recovery, at what level, and how long. They can’t make decisions regarding quality of life and what makes life worth living better than anyone else involved in the case, and, almost certainly knowing the patient less than family members, will almost always not understand the context in which any decision in absentia, that must be made.

    > Unfortunately I think it is hard to be a “diligent consumer”. Pres. Obama was elected because the majority of Americans are not.

    Look, you don’t make people into anything but dunderheads by playing to the fact that they are dunderheads

    We got into this situation by attempting to take away all responsibility from people.

    You aren’t going to “fix” it by NOT assigning responsibility to people. So unless your approach is “bend over and kiss your ass goodbye, it’s over and done with, and too late to fix” (in which case, why are you even here?) then you need to start forcing people to behave responsibly by placing responsibilities on their heads. Yeah, they are going to screw up. You cannot let that stop you from giving them the responsibility they long ago should have learned to take on in an effective and rational manner.

    > Fortunately, I can make that happen speaking up as a doctor. Unfortunately, non-doctors have a much harder time of it, and when they do they often get labelled as “problems” rather than someobody making the effort to listen to their concerns.

    Look, this is real simple: You have to learn how to deal with bureaucracies, idiots, and obstructionists.

    The first rule is to step on toes until people apologize.

    The second rule is to not take “no” for an answer, and to refuse to “make” decisions based on some “expert”s unexplained say-so.

    The third rule is to not wait until the last minute to learn what kind of physicians you have. If they aren’t willing to explain things long before you get to the final option, then you need to find a different doctor right then and there.

    Sorry. Most of this kind of thing is people not willing to make noise, not willing to be “a problem”, and not wanting to be responsible, despite the fact that it’s clearly their responsibility.

    If you want something that will be the doom of this country, that is at the heart of one part of it.

    “There is no week, nor day, nor hour, when tyranny may not enter upon this country, if
    the people lose their supreme confidence in themselves – and lose their roughness and
    spirit of defiance.”

    – Walt Whitman –

    That which is missing in their behaviors is those very qualities.

    > Patients and their families have rights and responsibilities, true, but that does not relieve professionals of theirs.

    And the chief question becomes, in many cases, whether those trump those of the patients.

    I would exclaim most certainly not.

    You do not, as a doctor, have a responsibility to prolong life in the face of torment and pain. You are expected to be able to, if not assist, then to step back and stay out of the way… or should be, if The Law was not screwed up royally by tort attorneys.

    OBloodyhell (811125)

  55. 24 pages

    Dustin (cf255c)

  56. Oh shit, forgot double space. 28 pages, then.

    Dustin (cf255c)

  57. “You do not, as a doctor, have a responsibility to prolong life in the face of torment and pain. You are expected to be able to, if not assist, then to step back and stay out of the way… or should be, if The Law was not screwed up royally by tort attorneys.”

    Look at this sentence. What is it saying?

    It should say “I think doctors ought to let hopeless patients die when they are suffering, and I blame lawyers for the fact that they don’t.”

    Was that really so hard? You’ve said that about 500 times in this thread, but you never actually get beyond your conclusory statement. Tell me what ethical principle makes your case.

    Dustin (cf255c)

  58. 54.MD @#47:
    > The rest of your dialogue…(snip)… but I don’t think technically it was (could be wrong).
    The problem is that you seem to want a case-by-case application of the law. That’s not how the law works. If you don’t allow the family the power to make the decision, then you are putting it into someone else’s hands. Always

    I’m not sure what’s driving you and what point you’re trying to make. I will spell out exactly what I mean and see if we have a disagreement, and if so, where.

    Say “Bill” and “Mary” keep “Uncle Jim” in a back room, feed him only plain rice or pasta, and often leave him in soiled diapers for a day or more. They keep him because they use 90% of his SS check for themselves. I think most people would say that “Bill” and “Mary” are being cruel and criminal in their treatment of “Uncle Jim”, and they should no longer be in the role of making decisions for “Uncle Jim”, even if the last document “Uncle Jim’ signed 5 years ago gave them that responsibility. Do you agree with that?

    MD in Philly (227f9c)

  59. How about

    78-year old patient with congestive heart failure (10% function), on phentanyl and morphine for total ankylosing spondylitis, intubated in ICU, with a needle being stuck into his chest every day to extract a two liters of fluid,

    and his son who does not want to lose him tells the doctor who suggests “hospice” to go pound sand?

    nk (df76d4)

  60. What kind of answer are you looking for? (Thoughtful and drawn out? A brief objective perspective?)

    It is relatively easy to put up general boundaries that should not be crossed, and another thing to approach the reality of life which demands decisions in spite of confusion and uncertainty.

    MD in Philly (227f9c)

  61. Forgot, stomach bleed (Plavix), inoperable, necessitating blood and plasma transfusions, too.

    If it’s not my time to die, I want people who love me around. But if it is my time to die, God help me from people who love me.

    nk (df76d4)

  62. nk, If that father did not make his wishes known, then it’s the son’s call to spend money on that kind of thing.

    I think that the family should be required to pay, via insurance or whatever, for this decision, but if the actual patient has not made a preference, then it’s up to the family to decide to try to preserve that life. There will be innovations to medical science made because people tried to extent the lives of very ill people, so I am glad some people do that.

    Dustin (cf255c)

  63. Well, that’s what I did, and they “stabilized” him and sent him home, and we had two caregivers and a visiting nurse caring for him, and then one day he had “no rhythm”, and the paramedics broke his neck trying to resuscitate him.

    nk (df76d4)

  64. nk-

    I started writing out a number of thoughts concerning the original question. Would you like me to post them still?

    MD in Philly (227f9c)

  65. nk, I’m sorry for your loss. End of life decisions are inherently awful. People really ought to make their wishes known. It helps a lot.

    Dustin (cf255c)

  66. Yes, please, MD in Philly.

    nk (df76d4)

  67. nk- Here are some thoughts on the issues I would have seen involved, for while you have given considerable detail, there is also much more I would need to know if I was going to be specific in what I would suggest.

    -Is the patient conscious, or is there any expectation that he may become conscious in the near term? Is he unconscious because of the morphine?
    -What was the precipitating event that brought him into the hospital, worsening CHF?
    -What condition was he in the week before he was hospitalized?
    -What is the son’s expectation or desire for the outcome of the situation?
    -What was communicated to the son with the word “Hospice”?

    If you tell me he was at home a week previous ago, debilitated but alert and interactive with family and glad of it, and some additional self-limited event put him “over the edge” for a moment (the GI bleed, pneumonia, mix up with medications) I would be slow to do anything but continue full options of care (except perhaps for chest compressions with CPR).

    If you tell me he has been declining for the last months in spite of close attention from a good physician, and he was taken to the ER one morning when he wouldn’t wake up, then I would definitely try to discuss with the son and others what their expectations are, and if there is a way we can come up with a plan to meet those.

    I generally try to put things in the perspective of “giving the person a chance to recover, but accepting the reality if they don’t”, and recognize there are “little things” that may make a big difference.

    When all is said and done, it would be good if all involved, family and doctor, could say “we did what we could, but he just couldn’t pull through”, nobody wants to walk away with the sense that they prematurely “gave up”. If that means a day or three more on a respirator for the family to see that things are not going to get better, fine.

    For example, if the narcotics have “put him out”, one could try giving stimulants to “wake him up”. A person can be on high dose narcotic to control pain and still be alert with dextroamphetamine. One doesn’t often see it done, more likely than not because people don’t think of it, but it is in the hospice literature.

    The things that could be done would range from full care including CPR in the event of a cardiac arrest, to withdrawing the ventilator and making sure the morphine drip was high enough he would feel no pain, no respiratory distress, and would quietly pass relatively soon.

    The path that I would likely take myself and would think “reasonable” to discuss would be to 1) take another thought about what simple things we could do to optimize his condition (doses of meds, etc.)
    2) extubate him when the family is aware and present or in the waiting room, give O2 etc., or morphine if necessary with respiratory distress
    3) assuming extubation is successful, decide with family if he is to be cared for in the hospital, in the home, or a residential hospice/nursing home convenient to the family.
    4) provide care to maximize his function and comfort as possible, and that of the family
    5) I would discuss ahead of time with family that attempts at CPR would be futile and unnecessary in the event of cardiac arrest

    It sounds like what was done was about what I would have thought appropriate (with the information that I have). The one exception is I would have tried to make it clear that CPR was not necessary, both to the family and to the paramedics.

    A friend who was in our wedding collapsed while playing volleyball in her mid-late twenty’s. While they revived her she was comatose for many weeks. They eventually decided to take her off of the respirator. The docs didn’t think she would breath on her own, but she did. And over the next many months/years, just about every time the docs said , “She’ll never…”, she would. That is what I call “giving the person a chance”. She wasn’t put on a morphine drip prior to extubation, she was given meds and food by a G-tube for months until she could swallow, etc. Last we saw her she was home with her family, with some major memory issues to be sure, but walking, talking, and hugging her children and husband.

    As I mentioned previously, nobody likes ambiguity, we want if “x”, then “y”, but life often does not give us the luxury of such specificity. Medical staff would prefer to know if they are to “do everything” or “let the person die”, as if those are the only choices. When my 95 yo grandmother was in the ER a number of years ago, the main thing the docs wanted to know was her “code” status, and my mother got ahold of me to talk with the doctor. I understood their concern of what to do in the event she stopped breathing or her heart stopped beating, but at the same time I wasn’t going to let them “put her into a corner to die”. I asked about her condition, and the answers revealed they hadn’t bothered to look very hard at what was going on. I tried to tell them, “Look, I don’t want CPR done, but I want you to evaluate her and treat her. I don’t want her to die from something you could treat simply”. Well, the doc didn’t like that answer and in frustration said, “OK, full code”. It is good I was on the phone, had it been face to face I might have needed to call you from jail. (She survived the doctors that time, no thanks to them).

    The original idea of hospice was to provide ongoing care after the specialist said, “there’s no more we can do”. It was/is not be only giving enough narcotics and ant-anxiety meds until the person dies painlessly, but to maximize the person’s life experience as possible. Sometimes that does mean fairly rapid and quiet passing under heavy sedation for pain or shortness of breath. But sometimes it means controlling pain well enough to get out of bed to greet friends, or to treat that pneumonia so we can make it to granddaughter’s wdding next month. (Yes, she’s dieing of cancer, but she doesn’t have to die from it today!)

    My experience was treating a lot of folks with AIDS, as over the years we went from having relatively little we could do up to the point where we expect people with AIDS to live an essentially “normal life”, but there was a lot of ambiguity along the way. There was a time when hospice rules, as interpreted anyway, were very strict. If a patient with AIDS and CMV retinits wanted to go on hospice, they would have to forfeit the medicine for the retinitis, risking blindness before they died. Well, that was a hell of a choice, struggle to survive alone at home with your sight, or being in a safe place being cared for but going blind. Thankfully, a lot of that irrationality has gotten much better.

    In general, I don’t think life is honored anymore as much as it should be. That does not mean I think everyone should have “everything done at all costs”, but that no life should be thought of as inconsequential. (Believe it or not, upon meeting my grandmother, one doctor actually said, “What’s the matter, don’t you want to go and be with Jesus?” It was not out of sincere faith, but condescendingly as in, “Why are you still around?”) While the rest of us were dumbfounded and didn’t know what to say, she said, “Well, I guess heaven doesn’t want me and the devil is afraid I’ll take over!”

    That is obviously a lot of info in regard to your question, along with a lot not directly related, but rounding out the topic.

    MD in Philly (227f9c)

  68. Thank you, MD in Philly.

    The stomach bleed, I believe, was the precipitating event — his hemoglobin had dropped to 6 by the time we got to the emergency room.

    Prior to that, at home, he was a 100% in command of his mental faculties even on the phentanyl. I was able to discuss business with him and I welcomed his advice. Very weak physically though and wasting no matter what diet he tried. At the hospital, he was knocked out by the extra opiates and also other sedatives (in order to endure the tubes and the procedures).

    I had the same problems with the codes. I was there when he had his respiratory distress at the ICU and I pointed out that because of his ankylosing spondylitis no chest compressions were possible and he could only be intubated by an anesthesiologist with and endoscope and that’s how it was done. I was not there with the paramedics. His nurse called me on the phone. They told her “We do everything or we do nothing”. Hell of a choice, when there’s no heartbeat.

    My daughter was four and a half at the time. She overheard our conversations and to this day she says “Grandpa died because he lost his rhythm”. ~_~

    nk (df76d4)

  69. You’re welcome, nk. My sympathy for your loss.

    MD in Philly (227f9c)

  70. More about facilitated communication in the Houben case:

    “If facilitated communication is part of this, and it appears to be, then I don’t trust it,” said Arthur Caplan, director of the University of Pennsylvania’s Center for Bioethics. “I’m not saying the whole thing is a hoax, but somebody ought to be checking this in greater detail. Any time facilitated communication of any sort is involved, red flags fly. . .”

    “Houben has since proven able to answer yes-or-no questions with slight movements of his foot. It’s a tremendous accomplishment, and raises the chilling possibility that, as estimated by Coma Science Group leader Steven Laureys in a Monday New York Times story, as many as four in 10 people considered utterly comatose may be misdiagnosed. But the legitimacy of interviews given by Houben and his facilitator to Der Spiegel, and shown on video by the BBC, may not be as certain.

    “I believe that he is sentient. They’ve shown that with MRI scans,” said James Randi, a prominent skeptic who during the 1990s investigated the use of facilitated communication for autistic children. But in the video, “You see this woman who’s not only holding his hand, but what she’s doing is directing his fingers and looking directly at the keyboard. She’s pressing down on the keyboard, pressing messages for him. He has nothing to do with it.”

    Brother Bradley J. Fikes, C.O.R. (0ea407)

  71. MD@#58:
    > they should no longer be in the role of making decisions for “Uncle Jim”, even if the last document “Uncle Jim’ signed 5 years ago gave them that responsibility. Do you agree with that?

    I’d concur. And there are specific rules/laws for such, too. Even more so than in the past, regarding abuse of the elderly. The key question here is that there be abuse, not disagreement over how much money is to be spent prolonging a life either long since gone or possibly living under far, far worse conditions than being kept in a dark room in a diaper.

    If Terry Schiavo was abused, I’ve never heard any legitimate claim to that end.

    Dustin@#57
    > Look at this sentence. What is it saying? It should say “I think doctors ought to let hopeless patients die when they are suffering, and I blame lawyers for the fact that they don’t.”

    Dustin, I am not going to waste any time defending a single statement which you have, in an assinine and irresponsible manner, taken utterly out of the context it was made in and tried to treat it as though it did not occur in a much larger context, twisting its meaning and content all out of its intent. Either make valid arguments and refutations regarding what I’ve actually said or go directly to Hell. Do not pass Go. Do not collect $200. In summary: STFU, you’re a jackass.

    nk @#59+
    > How about …
    1) Offhand, I didn’t see anything there which precludes consciousness and a self-expression of intent. If the individual is conscious and of sound mind, nothing I’ve commented on has any relevance, other than the right to not be forced to live if they choose otherwise.
    2) If they aren’t conscious, then there does need to be a measure of consideration of the possibility of zero recovery and no possibility of significant remission of the problem(s). Why should society or family consider it necessary to spend a hundred thousand or more to add 2,3,4 or even 15 weeks to that life? It’s not a natural progression towards death we’re rejecting, here — it’s an unnatural extension of life.

    Subsequent reading of later comments:
    1) Your actions represent a short term decision, not a long-term one. I certainly would not suggest that a person in an uncommunicative state for a very short time be treated with anything less than full reasonable care. How “reasonable” is defined depends largely on may factors not the least of which is the financial burden on the family and its future.

    As a mature adult, I certainly would not want my family spending my entire life savings (i.e., their inheritance) on keeping me physically alive an extra 10 weeks, esp. not in a comatose state. To demand/expect otherwise is downright selfish in the extreme. Sure, “I” earned it, it is mine to choose what to do with — but frankly, you can’t care very much for your kids if you would rather live in a coma for an extra 10 weeks than have them enjoy a boon of 50k or 100k, or more, whatever the costs would be. And by a not inappropriate extension of that, you should not demand it of the insurance company even if they paid for all of it — — because you’re essentially, by doing that, raising the premiums for every other customer. Again, exceedingly selfish, for a pretty minor boon to yourself, if it’s any boon at all.

    2) Don’t take any of this as a callous call on my side — you were in a difficult scenario for any human. I believe you should have discussed it with your father beforehand. Lacking that, you had an onus placed upon you that is a difficult one for any caring human being. Hopefully, this will impinge upon you the importance of making your wishes known, preferably to someone (preferably more than one person) who knows you and whom you trust to do things as nearly to your own desires as you can. And one hopes you also do the same with your wife, and, later on, encourage your children to do the same when they become old enough to really grasp the issues.

    3) People all too often work on the “head in sand” approach when it comes to end-of-life and QoL issues. They think talking about it is going to somehow ward off evil spirits. It doesn’t. It just transfers full responsibility onto people who shouldn’t have to shoulder that responsibility.

    ========

    My entire point is that you cannot make these decisions, nor argue for them, in just a few words. A human life is not just a form — a quadriplegic is still a human, though s/he lacks the form. It’s not the DNA — you can implant human DNA into a tomato. It’s still a friggin’ tomato.

    Unless and until we actually manage to develop a reliable test for “soul” (good luck with that — don’t hold your breath), a human life is in the mind — the thoughts, the feelings, the perceptions, the experiences… And many things The Right argues for a mindless protection of are things which really do fail on that level by all the data we actually have. That’s a tricky argument to negotiate — it’s fraught with potential pitfalls. But it’s one our power of saving/ending life has brought us to the level of. And I argue this: Mindlessly going “Save them ALL!” is just as foolish as the opposite.

    God gave you a mind, a heart, and a sense of Right and Wrong. Use it. EVERY TIME, in EVERY CASE. If you make a hard-fast rule that can be expressed in a single sentence, you’re failing both yourself and Him. There is NO RULE you can possibly name which I can’t detail an exception (possibly a pathological one, specifically designed to violate the rule) to. Not one. You can’t do it in Mathematics (Godel’s Incompleteness Theorem) — I will guarantee you you cannot do it in human interactions.

    OBloodyhell (811125)

  72. My entire point is that you cannot make these decisions, nor argue for them, in just a few words. A human life is not just a form — a quadriplegic is still a human, though s/he lacks the form. It’s not the DNA — you can implant human DNA into a tomato. It’s still a friggin’ tomato

    I think we all agree on this, not sure why the tone of combativeness.

    If Terry Schiavo was abused, I’ve never heard any legitimate claim to that end.

    I’m not sure if we differ on the meaning of “legitimate” or if your reading about the case missed some details. Her husband had a relationship with another woman and had fathered children by her. Terri Schiavo’s parents were willing to assume responsibility for her care, allowing him to divorce and marry the mistress, but he refused. In my opinion, that situation is a de novo argument why he should no longer be her power of attorney. There were numerous other issues as well.

    MD in Philly (227f9c)

  73. OBH:

    People all too often work on the “head in sand” approach when it comes to end-of-life and QoL issues. They think talking about it is going to somehow ward off evil spirits. It doesn’t.

    Several of us have tried to talk to you about this. You’re the one who seems to be trying to cut off the discussion.

    DRJ (dee47d)


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