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What Did You Expect?

Posted by WhiteCoat on February 19, 2008

sleeping-beauty.jpgLast week I read a story about a woman who woke up from a coma (alternate story here) and just haven’t had the time to comment about it. I haven’t had a good rant in a while and I have to get something off of my chest.

I’m happy for this family. What occurred was unarguably a miracle. These same types of miracles happen every so often. Here is a story about how a sleeping pill helped someone wake from a six year coma. Here is a story about a man that woke from a 19 year coma and said “Pepsi” as one of his first words. Here’s a story about a Polish man that also woke up after a 19 year coma. This guy woke up after two years in a coma and remembered everything. Do a web search on “wakes from coma” and you can probably find more.

The media doesn’t report about the 99.9999% of the other cases, though. No one gets joy hearing about comatose patients on ventilators for many years that get contractures, bed sores (even though bed sores should “never” happen), recurrent pneumonias, countless blood draws, Foley catheters, feeding tubes, etc., and then die a slow death. “If it bleeds, it leads” obviously doesn’t refer to decubitus ulcers.

What do we gain from keeping people alive in comas? I did a quick internet and Medline search and it appears that most of the time we don’t gain much. Here is one study stating that after 24 hours in a coma due to cardiac arrest, the chance of making a meaningful neurologic recovery is pretty much nil. After 72 hours, the three patients that woke from their comas “had severe brain damage and required permanent care in an institution” Granted that this is a small study population and it was published in 1982, but I didn’t find many other studies on the topic. This study shows a model to predict poor neurologic outcome after 24 hours in a coma, but did not have a way to strongly predict good neurologic outcome. Also note that these studies do not discuss traumatic brain injury, only comas from cardiac arrest.

There’s the old joke about the lottery being a tax on the mathematically challenged. Yet what do we hear about on TV? The winners whose lives have been changed by winning the lottery. Is the whole Lotto publicity thing a conspiracy? See this post on the Dilbert Blog. What you don’t hear about are all the indigent people who spend what little money they do have trying to hit it big in Jeff Foxworthy’s “redneck retirement plan” and who end up with even less money than they started out with.

I have a pet peeve about the show “ER” for the same reason. Sure, it’s great drama. But things don’t work that way in real life. One minute the paramedics are busting through the doors with an unresponsive patient on the brink of death, after the commercial for BellyBuster Burgers, the patient is sitting up in the hospital bed looking like a TV soap star. Most people in the medical profession realize that the TV show is drama, but the show also fosters unrealistic expectations in a significant subset of people who don’t know how medicine works. I see it every day in the ED and in the patient complaints the ED physicians receive.

The feelgood stories are great, but when you create a public expectation that such things will happen, you’re doing the public a disservice. Anyone who put all their lifesavings into lottery tickets (a move might even make it to the evening news) would be resoundingly criticized if they lost their money. Yet we routinely validate the same longshot odds when we keep comatose patients alive on ventilators year after year after year.

Wonder if the ending would have been the same had Sleeping Beauty been on a vent.

13 Responses to “What Did You Expect?”

  1. anon Says:

    These coma stories create unrealistic expectations among many. How could I pull the proverbial plug on a loved one when there are these exceedingly rare cases where someone “wakes up”? Yes, I know the overwhelming odds are that this hypothetical family member will never get better and will likely only suffer… but what if? It is the what ifs that make this a difficult situation.

  2. Jersey Says:

    Am I right that I heard that the majority of doctors are rather against most forms of life-support for the comatose? Mainly because most of the time they do eventually die?

  3. Nurse K Says:

    Now, now, Whitecoat…with hypothermia protocol following resuscitated cardiac arrest (and coma following said arrest), your chances of meaningful neurologic recovery are actually pretty decent these days…

  4. Patrick Says:

    If the desire to keep comatose family members vented, peeing, and pooping as deeply rooted and insane as the desire to gamble, there probably isn’t much hope.

    But one thing you could do is send each and every patient who comes through your ER with a pamphlet on coma survival statistics, a photo of a foley and a vent, a generic living will, and the address of a local free-legal aid clinic. Advanced directives don’t work all the time, but it might help cut down the number . . .

    You would run the risk of being branded as that “creepy Dr. Death guy” who works nights at the ER, but that wouldn’t really be so bad. It might make non-emergent patients think twice before coming in to bother you. :)

  5. scalpel Says:

    Don’t get me started again, Nurse K. Just don’t.

  6. Kat Says:

    Yea, I never really liked medical drama shows like ER, Scrubs or even Grey’s Anatomy- please, attendings hooking up with interns?? Ok, maybe so, but I still opt for shows like the Diagnosis X on TLC.

  7. davidrochester Says:

    I’d say an equal disservice is done by the “worst case scenario” medical stories. Either way, though, the fact is that extremism sells. The everyday whatever the hell happens to most people is of absolutely no interest. Hope and fear make money and keep people captive.

  8. Hope Says:

    I see your point. Actually…I see all points. I guess when you love someone it’s just hard to let go of hope. Is it really so bad that “we” are able to find hope? I’m not a “medical person” but we’re all human.
    So the odds are against “us”…Hope is a good thing. Maybe the best of things.

    Hope is a good thing, but unrealistic hope is a bad thing.
    I’m going to guess at the numbers, but look at things this way: Assume that there are 5,000 people in the United States in longstanding comas (or “chronic vegetative states” ;) on ventilators. Not a big deal, right? Each day on a vent in an ICU costs at least $2000 - probably more. That doesn’t count all the infections and surgeries for bedsores and antibiotics and specialized enteral nutrition, etc. Using just these numbers we are spending $10 million per day or $3.6 billion per year to foster “hope.” Lets say that one of those people wakes up after 19 years. We have spent $68 billion to allow one person to wake up to the point that he requires institutionalized care for the rest of his life.
    Couldn’t we put this money to better use? As in providing basic healthcare for the 50+ million uninsured in the United States?
    Hope may spring eternal, but it seems that this is only the case when someone else pays for it.

  9. Nurse K Says:

    Don’t get me started again, Nurse K. Just don’t.

    I almost added “despite what Scalpel is probably going to say.” Remember, not everyone who arrests and is “brought back” qualifies to be cooled.

    The last 2 patients who would have fit the study criteria we had…resuscitated-in-the-field cardiac arrest (they don’t haul here unless their heart is pumping blood on its own prior to arrival), comatose after resuscitation, relatively normal vital signs:

    1) Was posturing in ER, woke up after re-warming, had some brain damage, but was consistent more with STM loss in a demented old person. Was able to walk on his own prior to discharge…

    2) Was posturing in ER, seizing, no CPR x 10 minutes after collapsing, had massive increase in ICP from hypoxia, but woke up, nodding yes/no to questions after re-warming…will need more intensive therapy to recover, but is expected to recover pretty well.

    It’s amazing!! Most people who arrest never show up in the ER though because they’re dead in the field.

    OK, I searched your blog and Scalpel’s blog, but I couldn’t find the rift on hypothermia. Cough it up.
    I read your post on hypothermia when you posted it, K. I thought it was a cool idea (pun intended), but also thought that for most places outside of academic centers, hypothermia protocols would be difficult to implement. The rural hospital where I sometimes work has difficulty keeping the ED’s ice machine working at peak efficiency and there is no neurologist on staff.
    Also interesting that the study you cited in the previous comment showed that 26-39% of patients without hypothermia did well. Lot different than the study I found about neurologic outcomes. Why?

  10. scalpel Says:

    We haven’t explored our rift regarding the hypothermia protocol yet, but many of the same thoughts I have about PCI in STEMI apply to this protocol too.

    Both protocols are beneficial but are not easily generalized to all facilities. With the time pressure that occurs when these protocols are initiated, I am concerned that important findings can be missed that might ultimately reduce the already meager mortality benefit of each. I also wonder about the cost/benefit ratio.

    I’m a fan of both protocols, but as with tpa in stroke, I think the benefits are often overstated and the patient selection perhaps should be more carefully considered before I’m ready to dive in headfirst.

  11. Nurse K Says:

    These are my two posts about the hypothermia protocol working. These are just a couple of patients I had.

    The article I linked in my previous comment was a summary paper with numerous study findings. Some of the study centers only used ice bags to cool the patients, others had sophisticated cooling equipment. I didn’t look around for other articles when I linked it.

    In our hospital, we have the Arctic Sun and are able to maintain the patient’s temps dead-on at around 91 degrees. This machine is also used to warm the patient back up. We don’t start it in the ER, however; In the ER, we use chilled normal saline and ice bags to start to cool the patient. We use a foley cath with a thermometer in it.

    The only special equipment one would need is this arctic sun machine and the temperature foleys. Everything else is standard ICU care. Obviously, you’d need specialists/intensivists trained in such a thing.

  12. SeaSpray Says:

    Interesting posts and comments.

    I hope it is ok if I do this for you and Dr S. (I am guessing it is)but if not then please delete this. In a comment to a post on Surgeonsblog called “On Death.Two.” a commenter had this to say:

    happyj said…

    “Dr. Schwab,
    In regard to what a person in a coma or an unconscious person can feel, from the point of view of one who has been there: the unconscious person is extra-extra sensitive to emotion, and that extra sensitivity doesn’t go away for a long time after awaking. Much more so than hearing what people are saying to them, the unconscious person senses what people are feeling. Its as if there are eyes and ears over the whole body, but those eyes and ears pick up on emotion. I know it sounds wierd, but the feelings of the person beside you (as the unconscious person) become your own. There are no longer emotional boundaries. Those who visit the unconscious really need to leave their negative feelings (from anything at all) checked at the door. I still have nightmares from people who’s feelings weren’t positive around me. And all of those feelings that are sensed take on a life of their own and become the world that the unconscious person is temporarily living in. I know this will sound odd, but I think the closest way that I can describe being unconscious/in a coma is like being Dorthy in “The Wizard of Oz.” I write this because I feel passionately about new doctors understanding not only the state of mind/spirit of the unconscious person, but I write this because I want new doctors to know the power that they have over the unconscious person. Being in a coma is like being hypnotized. Anything, and I mean anything, that the doctor says to the unconscious person takes on a life of its own within the unconscious person and becomes truth. I knew then that if a person was supposed to die, there was nothing in the world that could save them, and if a person is meant to live, there’s nothing in the world that can kill them.”

    I found that to be most interesting. Sorry off track a bit. :)

  13. undergrad RN Says:

    I’m a little on the late side, here, but I was just reading that article about the heroin OD girl who has “miraculously arisen”…

    I have yet to find any particular point in the article where she is supposed to have made a significant bounce back to her former self. Perhaps I’m alone in this, but breathing independence and voluntary eye movement doesn’t mean this daughter is back. Far as I can tell, the best they have yet seen is a facial reaction to sweet/sour. I also see a lot of comparisons between her slack-jawed vegetative state and her vibrant high school pictures. But isn’t that the worst kind of hope you can give someone - just enough for them to keep believing? It’s like variable-schedule operant conditioning. The closer you are to giving up hope when your hope is ‘rewarded’, the longer you’re willing to wait before facing the inevitable end. What does that mean for heroin girl?

    ‘It’s a day-today waiting game to see what will happen next, but I just know she’s going to speak any day.’

    For now, it seems to mean to continue waiting and hoping. And waiting.

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