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Ethics Debate: DNR Order for a Retarded Kid

Discussion in 'Topics in Healthcare' started by DropkickMurphy, 03.13.07.

  1. DropkickMurphy

    DropkickMurphy Removed

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    This is drawn from a discussion with another SDN member, but could provide a very interesting ethical conundrum. What would you do if the parents of a retarded kid wanted to put a do not resuscitate order on their otherwise healthy (beyond the mental retardation) child? What if they refused treatment for their child as being futile, given the fact that the quality of life it experiences is not likely to improve with treatment and it could be construed as having what amounts to a terminal condition- just as a patient with a brain tumor can have treatment withheld even if the acute problem (pneumonia for example)- might be readily treated?
  2. spicedmanna

    spicedmanna In Memory of Riley Jane Moderator Emeritus

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    Yes, that is quite an interesting problem. Is the child suffering from intractable pain, or otherwise suffering condition, that to artificially prolong his life would be tatamount to prolonging his suffering? You'd have to make a case that mental retardation would result in this, I think. Personally, I don't think a cognitively delayed child could be said to be suffering in that way, not in the manner that, say, an advanced COPDer, or a 70 y/o septic male, undergoing systemic organ failure, who is being kept alive by a vent and some drugs, or a woman with wide-spread metastasis in just about every region of her body as a result of advanced breast cancer, or the AIDS patient that has to take 50 pills just to stave off, albeit temporarily, deadly and painful diseases/infections as a result of irreverseable immunocompromise.

    I want to think about this more though.
  3. DropkickMurphy

    DropkickMurphy Removed

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    I think it's more the fact that the quality of life is more important than the quantity. The argument for allowing it that I have heard (and support on a cursory level): Why expend resources on someone that really is going to be a non-functional member of society and put the family through any more of the hell that stems from the stress of taking care of many such cases?
  4. spicedmanna

    spicedmanna In Memory of Riley Jane Moderator Emeritus

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    I can understand that argument. I'm pulling stuff out of my ass, because I'm not up on all of the medicolegal aspects of refusing medical treatment. A mentally sound adult patient can refuse treatment. Since the individual in question is likely not mentally competent to decide on his own care, the guardians would decide on his medical care. Assuming the guardians are of sound mind, I think you would need to honor it. There is significant grey area, however, because you can judge that the parents aren't mentally competent to make such a decision and get all kinds of people involved from psych to social services.

    This also begs the question, "what is considered a functional member of society?" I don't think doctors should decide this. I also wonder, could the parents give up the care of this child to another, who would be willing to care for this child?
  5. mave

    mave Chill out, man.

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    I don't think that it's ethically appropriate for parents to have a DNR in place for a child who is mentally retarded, if the child has no other co-morbidities. DNRs should only be accepted if they come from rational, consenting individuals. The inability to extract the wishes from the patient is what I think the line of demarcation is for something like this. I think this is similar to Jehovah's Witnesses not being able to refuse treatment on behalf of their children.

    That said, I am more than fine with parent/guardian to remove life support if the child is in PVS.
  6. spicedmanna

    spicedmanna In Memory of Riley Jane Moderator Emeritus

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    Interesting, so there is something of an ethical precedence for this case.
  7. DropkickMurphy

    DropkickMurphy Removed

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    What is so wrong with rational, logical people refusing care for their child based on the fact that there is something seriously wrong with it? I see no difference between such a case and if it involved a patient with any other devestating condition (as opposed to JWs who are simply operating with a questionable grasp on reality). The choice should be left to the retarded child's guardian(s) so long as they are truly working from the standpoint of it's best interest.
  8. DropkickMurphy

    DropkickMurphy Removed

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    Not really.....the JW analogy isn't that close in nature to the topic being discussed here because you are looking at quality of life as opposed to the right to religious freedom and expression.
  9. MirrorTodd

    MirrorTodd living life

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    I think that the answer to your question lies with the severity of the child's condition. It is entirely up to the parent to make decisions for their child. I had a severely disabled brother for all of my life. He had cerebral palsy. When he was younger, my parents would never have thought of having a DNR in place, even they had 7 other children to worry about. However, as time passed on, the came to realize that eventually the seizures my brother was experiencing would eventually put him in a state that would require constant support, i.e. breathing tube/feeding tube. They opted for the DNR because his quality of life would not have improved if he ever came out of such a condition.
  10. mave

    mave Chill out, man.

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    Quality of life is not an issue in this case. If the child is healthy enough to be living without other co-morbidities, then the quality of life (which is conceded by the individual) is sufficient and is therefore not an arguable point for this issue. Again, if the child is in a coma, then it becomes the parent's option to remove life support which is not the same as a DNR.

    While their sense of reality might be different from your own, DKM, it is still *their* reality. The ethical argument here is that parents can't refuse to allow their children life-saving medical treatment because it conflicts with their own religious morality. A DNR is the same argument - live-saving blood transfusions, ventilation, defib.
  11. LizzyM

    LizzyM the evil queen of numbers SDN Advisor

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    How likely is it that an otherwise healthy retarded child will develop a condition that requires resuscitation? Not very likely, I suspect. So DNR may well be a moot point.

    Not provide ordinary medical care for a child with retardation? This could be considered neglect.

    The presumption that a retarded child can/will not contribute to society in adulthood kept generations of retarded citizens from developing their full potential. Many are educable and capable of holding a job and can live in a supportive environment (e.g. group home) that provides assistance with tasks that are beyond the mental capacity of the residents (paying household bills, home repairs, etc).

    Have you ever met a parent who wanted a DNR for their child or is this just a hypothetical case? I suspect that with the exception of parents of severely disabled children (on a vent, for example), something like DNR never crosses the mind of parents with disabled children.
  12. DropkickMurphy

    DropkickMurphy Removed

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    Outside of the totally nonviable cases (severe MD, CP, etc) I've only heard of it one time locally with a case of Downs.....the doctor totally overreacted over it and called the police and child protective services in on it.

    Well, for the sake of argument......the patient in question comes down with pneumonia (seeing as many DS patients succumb to pneumonia or UTI derived sepsis in their 40s or 50s). The guardian(s) should have a right to withhold treatment that would not be beneficial in the long term given the patient's underlying morbidity. The decision should be left to those with the most invested in the case of the patient at hand, so long as they are competent to make decisions.

    It is completely a quality of life issue. If the patient is going to be functioning at a level that basically reduces them to a oxygen consuming, carbon dioxide expelling mechanism for turning enteral feeding into loose watery stool, then yes, I would definitely say quality of life plays a major role in it.

    There is no religious morality inherent in this debate (unless the religious nutcases decide to start protesting that is), but you must also realize that the underpinning fact of why JWs can not refuse transfusion for their children is due to the presumption that there is a possibility that the child might choose to not follow that cult when they grow up and are competent to make medical treatment decisions for themselves. So we must operate off the premise that such a person would wish for a transfusion even against the desires of their family.

    The fundamental difference in this case is that the patient in this case will NEVER be competent to object to their guardian(s)' wishes regardless of age or treatment. In my opinion, it would be no different than withholding care from the coma patient you described, or an intractably demented schizophrenic patient.
  13. mave

    mave Chill out, man.

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    You've changed every single parameter that you started out with. First, we started off with an otherwise healthy MR child. Now, we're talking about seizures, and then, it's about what their life will be like in their 40s and 50s if they're lucky to live that long (median age is 31 years). In terms of medical ethics, since that's the framework we're using to debate, you absolutely cannot base your ethical decision on what you *think* their life will be like in their 40s and 50s. Should we all sign DNRs on the basis of our own mortalities? I'm going to be 85 someday... should I just give up now?


    Calling the police might have been an overreaction.... protective services not so much. I'm surprised that there wasn't an ethics board that was in on this.


    These are facts that should should be presented at the beginning :)

    You make the fatal mistake of assuming that just because someone has a mental disability, they have an inherently lower quality of life and are miserable. Have you ever met a Downs kid? They're pretty happy people. Lots of them live independent lives.

    I'm the last person to defend religious fanaticism. But, again, just because it's not my reality does not mean that it isn't someone else's reality. That's the beauty of a pluralistic society - you have to respect everyone's beliefs, and adhere to their wishes regarding their autonomy, provided no one else is harmed.
    I wasn't actually intending to inject religion into the debate. Rather, I was merely making the point that parents don't always have the authority to withhold life-saving medical treatment from their children. The end result is the same as in a JW case study, except replacing blood with code treatment.
    Also, if you're saying that a particular brand of religious observance that doesn't fit with your own constitutes a questionable grasp on reality, then you have to examine not only the realities of JWs, but also that of every other religious sect seeking your esteemed treatment. Moreover... you would have to examine your reality that a perfectly healthy child's wish to die is not in itself a questionable reality.
  14. diggitybop

    diggitybop

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    drop kick murphy,

    could you clarify what situation you are presenting? it seems from your original post you are likening mental retardation to a terminal condition, and you are using this ridiculous judgment to possibly justify a DNR? (nothing is wrong with the kid, but then gets into an accident and parents opt DNR because the kid is "retarded" anyway and won't ever obtain a higher level of consciousness)

    reading the rest of other people's posts i don't think this is the case but from your original post i can't help but come to this conclusion. also the fact that you continue to refer to the disabled kid as an "it" makes me read along these lines even more. if this is the case then i would say there is no ethical dilemma, just a twisted view of what qualifies as an acceptable quality of life.
  15. DropkickMurphy

    DropkickMurphy Removed

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    It's not the number of years, but what they will be able to do with those years. Yes, a small minority of them are high functioning enough to not require oversight at all times, but a good many of them are the drooling, twitching bearers of pithed expressions that you seldom see demonstrated when people discuss such patients. But then again, we live in a society that believes if you give a moron pleasant name to something it makes it less serious......retarded isn't right, let's call them developmentally disabled, cognitively impaired or whatever other name might make the rest of us not cringe so much and thank our lucky stars our own genes weren't scrambled during an early stage of development whenever we hear it mention.

    I respect their beliefs and I'm the last one to intervene and not let some idiot screw himself over if that is his wish based on misguided religious pretenses.

    BTW, I consider being woken up at 5 am and asked if I've found Jesus harmful. Can we put a stop to them now?

    I only question those religions or groups that have beliefs that contradict common sense.

    In my book, a retard is not "perfectly healthy". I would object staunchly to someone who wanted to refuse care for a child that is extremely likely to grow up to be a meaningful and productive member of society.
  16. gsmithers68

    gsmithers68

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    I think that assigning a DNR is a moot point if no life support is necessary. Denying the child medications for their condition in this scenario would be neglect. If the child were to go into a fatal stage and die because of a lack of medication administered by the parents I don't think this fits within the parameters and then the parents should be held responsible for their child's conditions and the state will probably immediately claim custody after the doctor reports the case. Now I think it is completely fine if a DNR is placed on a childs file regardless of mentally ill or not... this is the right of a parent. The DNR would be moot unless an emergency arose from a complication, accident, etc. An example would be if the medication had adverse side effects, the child had seizures and spasms then coded. I don't think a doctor can deny a parent the right to file a DNR before a terminal condition arises though.
  17. DropkickMurphy

    DropkickMurphy Removed

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    Would it be better if I chose an appropriate name? Mongo perhaps? But seriously, I only used "it" because it's gender neutral and typing out "he/she" in every other sentence would get annoying after a point.

    OK, you're a doc and the parents bring in a kid with severe Downs.....your typical DS patient with an IQ approximately equal to his body temperature in degrees Celsius and poor, if any, control of his bowels or bladder. The kid has a low grade fever, pulmonary infiltrates, and a productive cough (in other words: pneumonia) and the parents are refusing antibiotics on the grounds that their child is effectively terminal and they don't wish to do anything that will prolong the suffering of their child. What do you do?

    I just used the DNR order as an initial example because I figured many of the premeds on here would not be up to speed on the intricacies of palliative care and the ethics that accompany it.
  18. DropkickMurphy

    DropkickMurphy Removed

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    Nah, if it was twisted, I would have used the term lebensunwerten Lebens and suggested rounding them all up and actively euthanizing them. (BTW, not to add fuel to this, but the initial method the Nazis used to get rid of people they felt were unfit (mainly retarded kids) was starvation).
  19. pennybridge

    pennybridge Removed

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    is this kid hospitalized because of an explosive candy-gram?
  20. gsmithers68

    gsmithers68

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    I feel that a kid with this acute DS would have some more serious issues and probably wouldn't live through this pneumonia.

    My question is, a DNR is a DO NOT RESCUCITATE. Does that imply you have the right to stop antibiotics if the condition is not deemed terminal by the physician? This seems like it would fall under neglect if the parents refused to allow the treatment if the child is not going to die imminently from complications.This seems like a reasonable case where the DNR order would be legitimate considering the condition to be terminal. If the condition were not terminal then parents cannot refuse antibiotics for the pneumonia.
  21. DropkickMurphy

    DropkickMurphy Removed

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    Nah, dog bite.
    [YOUTUBE]http://www.youtube.com/watch?v=Dl8-yyTgt_o[/YOUTUBE]
    [YOUTUBE]http://www.youtube.com/watch?v=TzKpTHKu6WM[/YOUTUBE]
    [YOUTUBE]http://www.youtube.com/watch?v=NeDy5eRMwLg[/YOUTUBE]
  22. justin5790

    justin5790

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  23. DropkickMurphy

    DropkickMurphy Removed

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    You'd be surprised. I used deal with that very scenario on a regular basis (there was a large "group home" down the road from where I worked).....they normally survive a few bouts with it before there is either a resistant strain picked up, something else complicating the pneumonia (renal failure, aspiration, etc) or a delay in diagnosis.

    We had a case where the patient had no less than four drug resistant bugs in his respiratory or urinary tract, aspiration pneumonitis (he inhaled his vomit), and kidney failure. One of the ID docs joked that such patients are perfect examples of the old adage about your chances of surviving things that should kill you is inversely proportional to how much you have to offer to society.
  24. DropkickMurphy

    DropkickMurphy Removed

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    *wags finger* Personal attacks are a good way to get banned around here. :laugh:

    I'm not a heartless prick, I'm just playing devil's advocate. Just because I don't support the Special Olympics (it's more for the parents than the athletes.....it's like a dog agility trial for humans) or go on about how many homeless people I spent my days picking lice off of as an EC, it doesn't make me a bad person. Neither does the fact that I choose to be open about the judgments I make about people and their rights (such as the right to refuse care for themselves or those for whom they are legally responsible) and their place in society. Oh wait, you do the same thing. Nice way to demonstrate the definition of hypocrisy. :thumbup:
  25. NickRiviera

    NickRiviera MS-Never

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    Sorry I'm late guys, I was making popcorn.
  26. DocBR

    DocBR MS-3

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  27. DropkickMurphy

    DropkickMurphy Removed

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    Did you bring me the caramel popcorn like I asked?
  28. Dr.Inviz

    Dr.Inviz Removed

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    Damnit, you forgot JP. :laugh:
  29. justin5790

    justin5790

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    My brother has Down syndrome. I consider you calling disabled people "retards" that have nothing to offer society a personal attack, if you want to talk about grounds for banning. I wonder if you would make the same remarks if one of YOUR family members had DS, or any other mental handicap, for that matter.
  30. NickRiviera

    NickRiviera MS-Never

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    How's this?
    [​IMG]
    I'm too lazy to photoshop my face onto a tin.
  31. DropkickMurphy

    DropkickMurphy Removed

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    My cousin is retarded thank you very much (and I mean that....I'm not just being funny or sarcastic). I just don't think changing the name of the disorder changes anything in a real sense. I mean AIDS would still be AIDS if we called it the "a really bad cold" or even if it was "Happy Fun Sunshine and Kittens Disease".
  32. NickRiviera

    NickRiviera MS-Never

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    Yet "Happy Fun Sunshine and Kittens Disease" isn't a derogatory term...
  33. Dr.Inviz

    Dr.Inviz Removed

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    Darn, where would I barf?
  34. DropkickMurphy

    DropkickMurphy Removed

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    Yes, but you would still have a lethal viral infection. Not to mention once people caught on to the reason why you call it HFSKD, then it loses some of its luster because people would still avoid you out of fear and ignorance.
  35. Dr.Inviz

    Dr.Inviz Removed

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    Relax, nobody is making a mockery out of the situation.
  36. Tired

    Tired Still winning.

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    Nice.

    You know, despite your righteous indignation, the issue in this thread comes up pretty frequently. People (MR or not) with recurrent pneumonia will request no further intubation or have it requested for them by their guardians. And children born with severe chromosomal abnormalities will have invasive/life-saving interventions refused by the their parents. A parent faced with a profoundly MR infant will sometimes refuse surgery for TE fistulas, cardiac repair, or other interventions that will undoubtedly result in the child's death. Sometimes this is met with a fight by the physician, other times the doctor will go along with it.

    So why are you getting so worked up? Is it DKM's "lack of sensitivity to the subject"? Because I've got news for you, people who have actually functioned in this world frequently do not show the level of reverence you are demanding. If you want to cry with every patient facing a hard situation, feel free. The rest of us utilize callousness to protect our own hearts. Wanna guess who lasts longer in this field, seeing pain and horror every day?

    For myself, I see a couple different levels to this discussion. Refusing treatment for a child is not a simple matter, and specifics of each case do come into play. There has to be a judgement made (both by guardians and providers) as to the potential benefit of the intervention versus the pain/invasiveness of the intervention. Refusing intubation or surgery seems to be a little easier that refusing antibiotics or IV hydration. This is probably a good thing.

    Physicians who are uncomfortable with a parent's decision always have recourse available. First, they can refuse to perform procedures/treatments if they consider them medically futile. Second, they can seek cover from the hospital ethics committee. Third, they can ask for intervention from the local CPS or equivalent. Fourth, they can attempt to get the hospital's legal department to initiate guardianship of the patient. What they do not have to do, under any circumstances, is provide or withhold care that violates their conscience, although this may mean transfering care to a different provider.
  37. DocBR

    DocBR MS-3

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    I currently work for the contract habilitator for the Department of Developmental Disabilities in my state, and while none of my families would want their child to die, 80% or so of the time (at least after puberty) the children are a hugely destructive influence for the family and cause tons of problems. The wealthy parents usually send their kids to a residential (year round) program, while the poor families almost always send their children to live in group homes.

    When the kids with DS are young, they are gentle, loving and warm, but that does not usually last.

    I think the argument can be made for a lot of these parents that they would rather not have to deal with their children's disabilities. You may not like it, but it is the truth.
  38. MirrorTodd

    MirrorTodd living life

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    Well said :thumbup:
  39. DocBR

    DocBR MS-3

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    Point in case:

    Remember in the early 80's the term was Gay Acquired Immune Deficiency Syndrome? Then there was a huge movement (especially in the gay community) to drop the Gay part - well they did that, and in the mid-90's AIDS was still considered a 'gay disease'.

    It does not matter what you call it, Cognitively impaired, retardation, mental disability, etc eventually people will catch on and their will be a new PC term... Who's to say we will not keep upping the ante and wind up with Happy Sunshine and Kitten disease?
  40. DropkickMurphy

    DropkickMurphy Removed

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    Tired is the person I will hire as my speechwriter if I ever decide to enter politics. :thumbup:
  41. Davjc2009

    Davjc2009

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    Refusing treatment because they will not become a "meaningful and productive" human is somewhat hypocritical. By that same token, should you refuse to treat the homeless? I personally don't think begging on the street corner is meaningful and productive. Should we just screen at the ED doors "oh you aren't productive? there's the elevator go to the roof and do us all a favor"
  42. justin5790

    justin5790

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    It is not the issue that I take offense to, it is the language and attitudes used by so many here in this forum. I fully realize that the question is legit, and that many physicians could indeed face such a situation. However, I do not believe that "Well, your retard son wasn't really good for anything anyway, so let's pull the plug on him. Hey, it'll be nice to not have to clean up his piss, crap, and drool anymore, won't it?" is an attitude that anyone would desire of their physician. And even if this kind of talk was done away from the patient and their family, it is inevitable that one will hear you talking this way.

    Again, it is not the discussion of the topic that I think inappropriate, but the way in which some people are discussing it that certainly IS making a mockery of the situation.
  43. DropkickMurphy

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    Actually it was originally "gay related immune deficiency syndrome" (GRIDS) until they started to find cases outside of the gay community. ;)
  44. Dr.Inviz

    Dr.Inviz Removed

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    Make sure he/she doesn't bring Genetics along for the ride .... :laugh:
  45. DropkickMurphy

    DropkickMurphy Removed

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    :laugh: I've worked one call of someone threatening to jump. There was a cop on scene who decided to holler "JUMP YOU F___ING *****! C'MON! DO US ALL A FAVOR AND GET IT OVER WITH! IT'S COLD OUT HERE!" Even as callous as I am, I had to pick my jaw up off the ground on that one.
  46. Dr.Inviz

    Dr.Inviz Removed

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    You have much to learn about what physicians feel/say about certain things when not around the patient or patient's family. It isn't exactly all moral/ethical/flowery. Not that its appropriate for people to say that, but there are some out there who do ...

    And yes, you can be that doctor who cries with his patients even if the patient fell and scraped his/her knee as far as I care ...
  47. Dr.Inviz

    Dr.Inviz Removed

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    It's reverse psychology at its best. The person will never jump after that.
  48. DropkickMurphy

    DropkickMurphy Removed

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    You'll notice not a single one of us ever advocated soliciting a family to do that. The situation discussed was the opposite: the family suggesting that approach.

    My suggestion is develop thicker skin now, and it will make your experiences in healthcare a lot more pleasant.
  49. Davjc2009

    Davjc2009

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    F that... I'd Good Will Hunting his @$$... take the wrench ...

    That cop would live the rest of his life knowing he was responsible
  50. Dr.Inviz

    Dr.Inviz Removed

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    That is assuming the said-person actually jumped. Get back to me if that actually happens. Then, I will agree with your statement.

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