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Ask Slashdot: Communication With Locked-in Syndrome Patient?
cablepokerface writes "We've had a significant family catastrophe last weekend. My sister-in-law (my wife's sister) is 28 years old and was 30 weeks pregnant till last Saturday. She also had a tumor — it was a benign, slow growing tumor close to her brain-stem. Naturally we were very worried about that condition, but several neurologists assessed the situation earlier and found the tumor to be a problem, but not big enough for her to require immediate surgery, so we decided to give the baby more time. She was symptomatic, but it was primarily pain in her neck area and that was controlled with acceptable levels of morphine.
Then, last Saturday, our lives changed. Probably forever. In the hospital, where she was admitted earlier that week to keep an eye on the baby, the tumor ruptured a small vessel and started leaking blood into the tumor, which swelled up to twice its size. Then she, effectively, had a stroke from the excess blood in the brain stem. In a hurry, the baby was born through C-section (30 weeks and it's a boy — he's doing fine). Saturday night she had complex brain surgery, which lasted nine hours. They removed the blood and tumor that was pressing on the brain.
Last Sunday/Monday they slowly tried to wake her up. The CT scan shows all higher brain functions to work, but a small part of the brain stem shows no activity. She is locked-in, which is a terrible thing to witness since she has virtually no control of any part of her body. She can't breathe on her own, and the only things she can move, ever so slightly, are her lips, eyelids and eyes. And even that's not very steady. Blinking her eyes to answer questions tires her out enormously, as she seems to have to work hard to control those. The crowd on Slashdot is a group of people who have in-depth knowledge of a wide range of topics. I'm certainly not asking for pity here, but maybe you can help me with the following questions: Does anyone have any ideas on how to communicate better with her? Is there technology that could help? Like brain-wave readers or something? Does anyone have any ideas I haven't thought of regarding communication with her, or maybe even experience with it?"
Then, last Saturday, our lives changed. Probably forever. In the hospital, where she was admitted earlier that week to keep an eye on the baby, the tumor ruptured a small vessel and started leaking blood into the tumor, which swelled up to twice its size. Then she, effectively, had a stroke from the excess blood in the brain stem. In a hurry, the baby was born through C-section (30 weeks and it's a boy — he's doing fine). Saturday night she had complex brain surgery, which lasted nine hours. They removed the blood and tumor that was pressing on the brain.
Last Sunday/Monday they slowly tried to wake her up. The CT scan shows all higher brain functions to work, but a small part of the brain stem shows no activity. She is locked-in, which is a terrible thing to witness since she has virtually no control of any part of her body. She can't breathe on her own, and the only things she can move, ever so slightly, are her lips, eyelids and eyes. And even that's not very steady. Blinking her eyes to answer questions tires her out enormously, as she seems to have to work hard to control those. The crowd on Slashdot is a group of people who have in-depth knowledge of a wide range of topics. I'm certainly not asking for pity here, but maybe you can help me with the following questions: Does anyone have any ideas on how to communicate better with her? Is there technology that could help? Like brain-wave readers or something? Does anyone have any ideas I haven't thought of regarding communication with her, or maybe even experience with it?"
Yikes, that sounds like a terrible experience. My sympathies to your sister in law and the whole family.
There are several methods available, most prominently implanting arrays of electrode over pre-motor cortex, which can then be decoded online and used to control a computer pointer.
See for example:
http://www.youtube.com/watch?v...
You might want to contact Frank Guenther at BU. Who has worked on this for several years, and has started the Unlock Project particularly for people in your sister in law's situation.
I'm not a medical expert, but work in computer forensics. I think it's wise to begin recording her facial movements immediately to establish a baseline of activity and determine when improvements or declines occur. This seems like something easily accomplished with today's off-the-shelf technology, such as GoPro style digital cameras.
Dasher is a small software package (akin to notepad) that assists in typing without a keyboard. Maybe you could combine some sort of eye-tracking or morse-code system that can translate her eye movements into numbers and letters on Dasher?
"The difference between genius and stupidity is that genius has it's limits" - Albert Einstein
You probably know this already. For the moment you should concentrate on telling her that everyone is ok and she needs to rest. Talk to her, tell her not to try to respond and not to be frustrated. Don't ask questions as that will make her more frustrated. Keep her in the conversation without expecting her to answer.
Or considering that she has even a slight ability to answer they could ask her.
Wish I could mark as both insightful, troll, and funny, all at once.
Troll is not a replacement for I disagree.
I can't help but think that this device would come in useful: http://www.emotiv.com/apps/epo... It seems that some software could used to map brain activity to letters if not common words (or just a pointer) to at least help her to be able to communicate with the "outside world"/
They probably can't. Euthanasia is illegal in most places. If she has higher brain function that probably isn't a legal option.
In addition to technical solutions, you might want to investigate stem cell therapy to regrow or heal nerves in the spinal column. The technology is still in the early stages but has been show to improve motor and sensory function in some cases. Here's a recent review article from PloS that might be a starting point for you.
Consider unplugging the machines. That's no way to live. Not for her, not for anybody around her. I know it's a terrible prospect, but euthanasia is often the dignified way out.
While I would agree with you in the long term if there were absolutely no further room for recovery. However It is very likely that she will still gain back some of the motor controls she has lost. (though likely not all of it.) Brains have an amazing capacity for rewiring around damage, but it takes time and enormous effort on the part of the patient.
It's unnecessary. If someone wants to believe that their thoughts are in some way helping another, who cares (so long as they are not out killing people in the name of their religion or otherwise infringing upon others). At the very least, it may be comforting to the family to know that they are in the thoughts of others.
If the OP had said "but there will be many people thinking about you", no one would have had a problem with it. But since he used the word "prayer", it's important to ridicule him?
Similar experience here just a month ago. We've had luck with a hastily printed "Blink Board". An 18"x24" laminated print (so it can be written on) with the letters of the alphabet grouped into chunks of 4-letters (ABCD EFGH etc). The family member can point to the groups, and using blinks, allow the patient to (slowly) spell out words.
On the reverse side, we printed quick "I feel" icons that we can point to (pain, itch, hot/cold, etc).
Comment removed based on user account deletion
Wow. Just wow.
Life is suffering. We can all certainly avoid a great deal of suffering by killing ourselves painlessly now, whether we are locked in or perfectly healthy. But life is sweet as well. Dying forecloses on the possibility of further sweetness. This person clearly hasn't given up on further sweetness. This is not a good time to get into an argument about your favorite political hobby horse. I won't say that you suck as a human being, because I'm sure you have some legitimate and possibly heartbreaking reason for having said what you said. But context is everything, and this isn't the place.
That is her decision and not his to make. Unplugging the machines when she doesn't want them unplugged is murder.
Slashdot is always remarkably helpful.
There are a variety of eye trackers on the market, but those might be tiring to use. There are also some EEG devices coming out that might help you, with a bit of hacking.
Quick google search turns up:
http://mindflexgames.com/ - game from Mattel
http://interaxon.ca/products.h... - input device, doesn't look like it's available yet
http://emotiv.com/store/headse... - this one looks like the most developed. A bit expensive, of course, but nothing like a clinical EEG.
http://www.transparentcorp.com... - Some software and another device (NeuroSky).
http://harteware.blogspot.ca/2... - DIY
Although the situation in your case sounds much more severe, I had two brain-stem strokes when I was only 39 years old, both in the same day, caused by a ski-helmet that injured my neck in an otherwise perfectly safe fall (obviously I'll never wear a ski helmet again). They were pretty bad strokes, especially the second one, and treatment was not given in time to help because the idiot on the 911 line refused to believe my own diagnosis. I lost all sense of balance and Proprioception, limb coordination, fine motor skills... All were gone and the world did nothing but spin... 2 weeks later I was skiing again at around 75% capacity. Now (8 years later), I am at around 90% in most activities! and probably 95% in those involving gross motor skills rather than fine motor skills. It turns out that brain stem strokes are very common and you should be able to find great support. In most cases the brain rewires itself so quickly and so well to "work around" these types of strokes that recovery is surprisingly quick. I'm not sure that the case you describe is hopeless. And probably the worst thing to do is tell the patient it is hopeless. She needs to have hope that this could repair itself. You need to do some research, lots of it and very fast! Key to my recovery being so quick and so successful was a very strong will-power and my absolute need to get back on those ski slopes ASAP. I continually pushed far beyond the doctors recomendations in terms of physical activity, and that helped force my brain to re-wire and re-learn things quickly. I can still "feel" that the "wrong" parts of my brain or doing the work that used to be done my now-dead parts of my brain stem, but overall I guess I'm lucky. You need to get brain stem stroke specialists involved ASAP. At the time I had my stroke these were practically unknown, usually being misdiagnosed. I had to travel across the state just to find a specialist who had dealt with brain stem strokes. Not all doctors or even specialists will know what they should about this type of injury. Act fast, keep up hope, and maybe you'll find things aren't as bleak as they seem.
First of all, my condolences. That is a terrible, terrible thing to have happen. I feel especially bad for your sister-in-law, as this is pretty much a worst-case scenario -- conscious and aware, but unable to do anything. The mere thought of being in that kind of state terrifies me.
The brain is quite resilient. Your idea of some sort of brainwave device may actually have some merit; the "biofeedback" craze of the 1970s and '80s demonstrated that you can train yourself to modify your own brainwaves (and other "involuntary" bodily functions), and people have been working on brainwave-based control devices ever since. I'm not sure what's currently out there, but perhaps a creative combination of off-the-shelf sensors and some hacked-together interfaces to a laptop or Raspberry Pi type device could yield some useful results.
If you don't mind telling, what is her prognosis for recovery? Is this believed to be a temporary, or (shudder) long-term/permanent condition? This will certainly affect how you will want to proceed.
this is NOT insightful.
we (medical or scientific communities) do not have the understanding to guide such a decision. we simply can't tell when a patient will never recover.
I personally would not want to be kept alive without prospects of a quite high quality-of-life. others certainly have different thresholds, and none of us can gainsay that preference. to do so is murder.
I can re-check the research, but IIRC, most folks even, after they've had some months to get used to their new situations prefer to live than to die. (It's easy to project what you think your preferencs would be... but you in the situation is not you watching it from outside. I haven't been through anything nearly this severe, but I dealt with a spine injury which I was told meant I would never live an active life again*... and mostly learned not to try and second guess future me.**)
* This turned out to be incorrect, but there were some years in there that were chock full of suck.
** Which doesn't mean I don't have a living will, but did influence how I wrote it.
It's hard to say what her long term prognosis is at this point- it takes weeks or months for swelling to go down and the brain to return to normal and/or rewire itself.
love is just extroverted narcissism
The question was about methods of communication, not "should she be allowed to live?"
Guitarist Jason Becker communicates very effectively using his eyes. Look up information about him.
If she has higher brain function, and from the summary it seems she has full higher brain function, pulling the plug without asking her would be murder.
We've had similar predicaments in the family, and my dads uncle is in jail (life time sentence) for making the 'human choice' - which was illegal.
It's easy to say someone sucks as a human being, but are you really willing to sacrifice your own life, to euthanize someone elses? (effectively ending two lives at once)
she has virtually no control of any part of her body. She can't breathe on her own, and the only things she can move, ever so slightly, are her lips, eyelids and eyes
My condolences to your sister-in-law, her and your families, and congratulations on a healthy new baby. This is a terrible situation for everyone. I have some idea as my wife died of a brain tumor (GBM) that herniated her brain stem in January 2006, just 7 weeks after diagnosis (Remember Sue...) Thankfully, we had that time together and were able to discuss and finalize her wishes. (We even had one last kiss and "I love you" before she, unexpectedly, became unconscious.) Have you asked her what she wants to do and if she already has a DNR, advanced health-care directive and/or health-care proxy?
I know she is only 28 years old and may, over time, possibly recover further, but she may not and may get worse (soon). Please take this time as if it were your last together, just in case. Consider and prepare for the alternatives and unexpected. I'm sorry I cannot offer more.
It must have been something you assimilated. . . .
So you are advocating pulling the plug on quadripelegics, because they have no motor control? You people disgust me. She has full consciousness and ability to think. She can communicate by blinking. Why don't they just ask her?
I'm truly sorry for what has happened.
Many people are addressing how to communicate, but few are addressing what to communicate. At this time, your sister-in-law is tired, afraid, and a new mom. Her mental stamina is low and she is trying to heal. Making it harder, her potential to heal won't be apparent immediately, and can take several weeks or months to show.
Let her spend time with the baby. If things go badly this may be her crowning achievement, and if things go well, this may be her greatest mental uplift giving her the energy to heal.
Spend time listening as well as talking with her. Always give her comments to you priority over your comments to her. If her time is limited, there's much she will want to say - you have to let her get it out.
Just take things day by day. There will be good days and bad days. Bad days can actually be good news - healing is tiring, and while her brain swelling goes down and she recovers she will be extra tired. As parts of her brain switch back on and fumble to find their mental feet, she will sometimes seem off-balance.
Finally, given the affected area, modify your expectations of touch. Contact is important, but it should be somewhere she is connected to. If she can't move or feel her hands (which are two quite separate things) but she can move her eyelids, contact with her face might work better. Give her a say in that - she will guide you. Touch and intimacy are vital to her wellbeing.
I hope she makes a full recovery. She may well not. Take what you can get, listen to her, and do the best you can as a family to work with what you now have.
Congratulations on the new baby. I hope they will grow to know and enjoy their mother.
I'd agree with this. This is very early days, and while the road ahead is difficult, she could recover far more than is immediately obvious.
The world's burning. Moped Jesus spotted on I50. Details at 11.
She's not a vegetable you idiot.
How about the wishes of the fully conscious patient? Maybe that should prevent him from doing what you think is right.
While the brain can remap, as someone mentioned earlier, it can take up to a year of effort on the patient (as well as the doctors) for the process to really begin. It is draining on the patient, severely draining. My wife lost the toes on her right foot recently, and she is beginning therapy soon to try and stop the phantom pain by using a mirror to re-wire her brain into thinking she has toes on that foot and to stop with the pain and 'oh crap toes missing' messages that are currently being sent.
She isn't expected to even begin to see results from this for 9-12 months while the brain re-wires itself.
Unless there is some possibility of quick recovery from this, I would have to go with some of the others and recommend the painful (painful for you; remember, funerals are for the living), but more humane, option of pulling the plug. This situation is exactly why my wife and I both have extremely detailed living wills.
the sad thing is you are coming off like the same kind of prick you equate believers to be. Kudos for showing that atheists can be just as big of an asshole as christians and islamists
have you seen my sig? there are many others like it but none that are the same
I like one of those other suggestions get one of the games that respond to brain wave levels. Set it up as yes or no. Then get a board with different words and conditions on it. So I feel and point out the words(pain, happy, want to get drunk). And an outline of a body. So you can quickly make sentences with just a handful of yes no replies.
i thought once I was found, but it was only a dream.
My thoughts exactly. Dasher is a really good product, easy to use.
If something is so important that you feel the need to post it on the internet... It probably isn't that important.
Everything you will want to try is going to require enormous sums of money, money the insurance company is not going to give you willingly. They may provide her care, they may pay for some baseline therapy, but they are not going to pay for exotic therapies.
Money from a lawsuit can help pay for these therapies. Money from a lawsuit can get her home renovated to handle her expected condition for the foreseeable future.
Someone messed up. You wife's sister should not end up in a closet, bankrupting families in the attempt to improve her life.
Get a lawyer.
So, now it's sociopathy to want to end suffering, rather than force them to live in agony for our own selfish motivations?
An enigma, wrapped in a riddle, shrouded in bacon and cheese
You seem to hate theism with a religious fervor.
Are your assertions based on a careful controlled study or are they an article of faith?
I'll take someone who is deeply religious but believes "to each his own" over an atheist who thinks they need to tell everyone else what to (not) believe every day of the week.
Once the world is free of people who can't stand to have others believe differently from them, it will be a better place.
If she has higher brain function, and from the summary it seems she has full higher brain function, pulling the plug without asking her would be murder.
So ask. Hook her up with one of those Stephen Hawking eye-tracker things, and ask her what she wants.
Were I in her hospital gown, I know what my answer would be. The tough part would be deciding which smart-ass remark I want on my tombstone.
An enigma, wrapped in a riddle, shrouded in bacon and cheese
It's not a direct help, but I can tell you that it's certainly possible these days to communicate and control external actuators using brain activity only. What they're doing (AFAIK) is record the 2D electrical activity on the brain's surface (using EEGs on the scalp or -- for even greater accuracy -- below the skull bone), analyze it statistically and deduce what the person is thinking of doing, e.g. move a mouse pointer in some direction and choose which of several buttons to press. It requires a learning phase, but then the accuracy is quite high. I'm not sure about the actual bandwidth that you can achieve when communicating using this method only, but it's much better than what was possible only a few years ago, and it's improving further.
Brain-Computer Interface-The HCI communication channel for discovery
brain-controlled Pinball
(the links refer to a Berlin-based research group -- but that's just a coincidence because I live there a saw a presentation a few weeks ago. I'm sure there's even more research on the subject in the US).
First, recognize the need for empirical information on the state of your loved-on. It is of very little use to make subjective observations, since humans are incredibly good at finding patterns where none exist.
Second, recognize the difficulty of what you're undertaking. Humans are at the very beginning of understanding how our bodies work, and we have essentially no model to predict when patients will, or never will, recover from injury like this. What makes it hard is that this ignorance means that you will be trying to make decisions under extreme uncertainty - but that doesn't mean you shouldn't do so. For instance, there should probably be a time past which you withdraw life support when there are no signs of recovery. No one knows how long that should be, but the key thing is whether there are signs of hope.
What would be such signs? You've already read something about the locked-in phenomenon. First, CT cannot possibly provide any information about function: it measures x-ray density, and provides only structural information. At best, it might show which tissue has died - but unfortunately, we have very primitive knowledge of how that relates to function (or recovery). ERP (scalp electrodes) are MUCH more relevant: there is a huge literature describing the sorts of obligate responses made by sensory portions of the brain (our understanding of less sensory processes is rather spotty). PET can map metabolic activity, but that has a much less obvious relation to organized, functional brain activity. I think ERP monitoring should be your primary path forward. There is lots of research on this topic, and pretty much any university psychology/neuroscience/psychiatry department would have well-informed people you could talk to, often ones able to perform ERP tests for brain function. (The technology of ERP is very not hard, and designing effective tests is somewhat subtle. But if a test is supposed to guide a decision like continuation of life-support, it's not a casual trip-to-radioshack kind of project.)
In short, find a non-self-deluding way to gather empirical signs of functioning personhood; in the absence of such signs, figure out how long to wait.
You might want to check out the book "The diving bell and the butterfly" - it was actually written by a locked-in syndrome patient (who dictated the whole thing by blinking out letters). He was even worse off, since he had only one good eye.
Proud neuron in the Slashdot hivemind since 2002.
look in the mirror. Its people who like to treat everyone else who believes in a god as someone who needs to just go and kill themselves already make it harder on people like us who just want to be left alone to live our lives.
have you seen my sig? there are many others like it but none that are the same
Good advice, though it sounds like she's conscious and capable of communication, so at least if she has family that will honor her wishes she's not nearly as bad off as she could have been in that regard.
--- Most topics have many sides worth arguing, allow me to take one opposite you.
I am not a physician. I am a neurobiologist. I work mostly on motor control. (And I teach neuroanatomy, though atm only at an undergraduate level.)
First things first. It's darned early days in all of this, and recovery from brain injuries is often fairly unpredictable. Even if she doesn't get significantly better - which may be fairly likely, and I don't have enough information to comment - what's hard now will likely become easier via repetition.
I'll generally agree with the comments that you're probably going to be better off dealing with specialists than trying to get a commerical EEG type device to serve in its place. Though down the road, it might make for an interesting project (and increasingly there are cool things being done with consumer hardware.) The expensive proprietary devices may or may not be optimal... but let everyone catch their breath first.
Where I think some research could benefit you all a lot is making sure she's seeing the right specialists. Getting in touch with the right people at your local academic hospital - which might, down the road, turn into your not so local academic hospital - is, long term, probably the most useful thing. As other people have mentioned, rest and support can be more useful than trying to fix everything right now. But if you're going nuts looking for options, see if you can start figuring out who, reasonably local, has a serious background in this type of injury, and see if you can get them to look over her MRIs. It can be pretty easy to end up sticking with a suboptimal doctor out of inertia. Asking questions and calling around can really end up being the thing that makes the difference in the long run. (And here I speak from personal experience from my own history of spine injury.)
If you'd like help navigating the process, drop me a note.
Were I in her hospital gown, I know what my answer would be.
Really? Because I don't know what mine would be. And I have thought about it. Some days I feel like I could live without sight as long as I had my limbs. Other times I think I'd be OK in a wheelchair. Then there are days when my inner cheap bastard comes out and says "do whatever's cheapest!" I'm not about to judge somebody who decides either way. This is one of those "unless you've walked a mile in their shoes" sort of situations.
Hell, I don't even know what I will want for dinner tomorrow night.
It was just as unnecessary to post the superstitious comment that SuricouRaven replied to, but you didn't call that AC an asshole, nor did you say to them, "Who cares if you're praying?" No, you just wanted to single one of the "unnecessary" comments out for "you're an asshole" treatment. Ok, let's probe deeper into that.
Someone is begging for real help with a serious real-life problem, and they got an AC reply that was pretty much the same as "I'll get flak for this, but have you tried applying nipple clamps to the patient and then standing over her while you masturbate?" and someone shot back, "I predict that won't work," (in a tone suggesting some offense at the idea even being suggested). Now look at which of those two you just flamed: was it the silly/offensive suggestion, or was it productive comment to try to correct, cull, or (yes) mock that silly/offensive suggestion?
You decided to flame the relatively productive comment.
Perhaps you, sir, are the asshole.
"Believe me!" -- Donald Trump
Interestingly enough, on happiness/life-satisfaction questionnaires, average scores for locked in people are actually a little higher than scores for ordinary people.
Do you think the mother would have been able to live with herself, knowing her baby was gone and could have been saved?
Yes.
You know fuck all about people. People can "live with themselves" after all sorts of shit.
It's as dumb as asking "will the child be able to live with itself knowing it killed its mother".
Watch this Heartland Institute video
If she has higher brain function, and from the summary it seems she has full higher brain function, pulling the plug without asking her would be murder.
So ask. Hook her up with one of those Stephen Hawking eye-tracker things, and ask her what she wants.
Frankly, I would not do that until she has learned to cope with her condition. I have a close relative who went through a debilitating stroke and honestly I was about ready to drag her in to a psych ward I was so concerned about suicide risk. Today she gets incredibly frustrated with things, but for the most part is living happily and reasonably productively for somebody who is disabled. She needs a lot of help, but I think that a decision to commit suicide would have been a rash one.
It is simply unwise to make any life decision just after going through a traumatic event. If in a year nothing has changed somebody in this condition would be in a much better place to make a thoughtful evaluation. Maybe less time is required. However, it is foolish to contemplate something like assisted suicide a short time after something like this.
Exactly my first thought, and I agree.
I'm not dead positive it matters, but I suspect that it does. Perhaps not on any way we'll recognize on this life.
But it's a risk I'm willing to take.
There seems to be a lot of people here who, by their comments, seem like a massive electrical 'stimulation' to their head might be an improvement.
He said "last Saturday", it hasn't even been a week since she had major brain surgery, and from the sounds of it she does have some minor facial control (eyes, lips), and can answer yes/no questions, it's just hard/tiring, "she" is still "in there", just not with a body that is under her control very much. I wouldn't be rushing to "pull the plug" just because she can't breathe on her own - first off it should be *her* decision as long as she is conscious and able to answer yes/no questions at least, and secondly after brain surgery she's likely to have a lot of brain swelling that could take quite some time to decrease and might lead to improvement.
Couldn't agree more.
I have a close relative with who suffered a stroke which caused aphasia. She went from only knowing maybe a few dozen words to posting on Facebook in less than a few years. While many things frustrate her to no end (those cute memes you post on social networking would benefit from screen-reader-compatible text in the post), the fact is that she is fairly functional now and able to enjoy many things in life.
Oh, another little public service message to anybody who works in a government licensing examination capacity: somebody with anomic aphasia might be perfectly capable of understanding the driving laws but be unable to complete a multiple choice exam, even if the question and answers are read aloud without modification. There really should be an accommodation where somebody is allowed to be interviewed as long as they can demonstrate the necessary proficiency - somebody with anomic aphasia can often explain things in their own words rather well.
Like Stephen Hawking....good think they didn't listen to you...
Stephen makes his own decisions and chooses to continue at this time. Perhaps the better response would have been "determine the possible outcomes and ask whether she wants to continue with any of those, or pull the plug." Unless it is put out there as an option, some may not be able to make their will known.
The cesspool just got a check and balance.
Further down in the same article:
59 percent — suffered complications, compared with 51 percent of those who were uncertain. The authors left open the possibility that this was a chance finding.
Let's get one thing out of the way first: it doesn't make much sense to me that prayer would do anything for the patient - positive or negative. I do, however, firmly believe prayer is highly beneficial for the person who does the praying. Not in a metaphysical sense but in a psychological sense: the relatives, these poor people, are sitting there, stressed out about the dire situation their beloved one is in, and there is nothing they want more than being able to help, only they cannot . Prayer is as old as humanity, and it is for a reason: it's a psychological coping mechanism to deal with a situation out of one's control. I believe it's a normal and healthy part of the human brain's reaction to helplessness; it channels the maddening will to do something about the situation. Denying the existence of deeply rooted psychological impulses and coping mechanisms never did us much good; think for instance of celibacy. There are many books and studies about the benefits of meditation on the mind, but meditation and deep, sincere, selfless prayer are really one and the same.
I'd go even further and say it's good for you to pray if you're not closely involved; it gives your mind a time-out from the constant stream of information, and gives you a moment of serenity to contemplate the madness of your lifestyle. In the case of a disaster (where applicable), it might arouse feelings of empathy, and might make you more likely to donate, or support political efforts against the causes that made the disaster claim so many lives. And even if not, it's a kind gesture towards the people who are immediately involved. In that sense, I fully support GP's statement.
So as an atheist, you might be bothered by the idea of people praying, but really, that's just another form of evangelic intolerance. Specifically, intolerance of people who see life different - the same kind of intolerance you, as an atheist, probably find highly offiensive in some religious groups. When confronted with non-atheists who can't do anything about the situation, do encourage them to pray - it's good for them! When you're the one whose close relative is fighting for their life, in lieu of praying, take 15 minutes to observe your own mind trying to cope, desparately seeking for ways to do something about the situation, however futile. Perhaps you'll come to better understand those who pray.
she is incapable of breathing on her own. There is no medical or ethical obligation to keep her on artificial life support against her wishes, or the wishes of her medical proxy if she is incapable of making a decision on her own.
Totally, utterly incorrect. Even in the most liberal jurisdictions (I'm thinking Belgium and the Netherlands), pulling the plug on the life support system of a patient who has a reasonable prospect of regaining concsiousness and being able to communicate with her surroundings without being in constant agony is leaglly murder, medically a clear-cut violation of Hippocrates' oath, and ethically almost universally condemed. And in this case she is already conscious, able of rudimentary communication, and not in severe agony, so there's no wiggle-room there. At this point, you couldn't pull the plug on her even if she asked to, becuase her mind is clouded by being in the process of recovering from a severe stroke. I can't believe I'm even having this conversation; pulling the plug is so blatantly out of the question that it's slightly scandalous someone even suggested it.
Totally, utterly incorrect. Even in the most liberal jurisdictions (I'm thinking Belgium and the Netherlands), pulling the plug on the life support system of a patient who has a reasonable prospect of regaining concsiousness and being able to communicate with her surroundings without being in constant agony is leaglly murder.
Fortunately for a lot of suffering people, you are completely full of shit. From the American Medial Association Code of Medical Ethics:
"The principle of patient autonomy requires that physicians respect the decision to forego life-sustaining treatment of a patient who possesses decision-making capacity. Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical condition [...] Even if the patient is not terminally ill or permanently unconscious, it is not unethical to discontinue all means of life-sustaining medical treatment in accordance with a proper substituted judgment or best interests analysis. "
Italics mine.
Forgot the link: http://www.ama-assn.org//ama/p...
They can make another kid, there is only one of her!!
What a sad and tragic story. I'd have saved my wife, no question or 2nd thought in that contest. I'd rather have the woman I'd known and loved for time, than a fetus I'd not met and hadn't even processed the atmosphere yetâ¦.now, he's stuck with a vegetable for a wife, and raising a kid on his own. Worst of both worlds.
Why was this such a hard choice to me? Seems a no brainer to me (no pun intended).
Light travels faster than sound. This is why some people appear bright until you hear them speak.........
I don't normally reply to trolls but I must point out that you omitted the part where I also said "If there were absolutely no further room for recovery". I don't know anyone that wants to live as a complete lockin and I never suggested anyone be euthanized against their will so stop reading crap that isn't there into it.
http://www.cnn.com/video/data/... Sounds like there is some hope for recovery. Good luck, man! Love that baby!
ASCII tastes bad dude.
Binary it is then.
I clicked on this article hoping that the great hive-mind of Slashdot would turn to the challenge at hand and offer hope and advice to the requester, rather than belligerence and foolishness.
I was rather disappointed, although not entirely surprised.
Gamingmuseum.com: Give your 3D accelerator a rest.
Then perhaps I might elaborate on my trolling. Yes, I'm an asshole. Sometimes that is what is needed.
Prayer is not just some harmless little habbit. It's woo. One of a large number of similar superstitions. While many may have conviction in the power of prayer, every scientific investigation and even just basic common sense says it does squat. Nor is is simply a harmless little ritual that brings some people comfort: It offers a false solution. People *die* because they trust in the power of prayer rather than medicine, just as they die because they get suckered into homeopathy or crystal healing or a hundred other piece of nonsense. Worse, children die because their parents are convinced of the power of prayer.
This scientifically-nonsensical rubbish needs to be pointed out. It's followers need to be challenged into providing verifiable, repeatable, non-cherry-picked evidence in support of their superstition - and, if no such evidence can be provided, then the followers need to be convinced of their error. And if they remain convicted in spite of all evidence to the contary then it is the duty of all right-thinking people to make a mockery of them, so that others may see the error before they too fall prey.
Prayer is something of an odd case, in that even those who claim to believe in the power usually act as if they do not. They will pray for their loved one's to be healed, but take them to the hospital regardless. There are a few exceptions who die for their superstition, but these are the exception. That does not excuse prayer: It only makes the error more apparent.
The PRC has an official, state-endorsed Christian church.
The USSR's relationship with religion was variable. Stalin did try to surpress it prior to the war with Germany, but then suddenly changed position and started heavily promoting and supporting the Russian Orthodox Church as a means to encourage patriotism and resolidify the Russian sense of identity.
What are you talking about? It's a giant collection of summaries of peer-reviewed papers. What's your problem with peer-reviewed science? Oh right. No magic psychic powers.
Wow, you heard something with no description and no citation. Wow, I'm totally sold, sign me up for your newsletter!
Do you really honestly think I'm incapable of grasping that different people pray for different things at different times?
You really have no clue what the scientific method is, do you?
Here, let's use this as a demonstration. Slipher discovered that almost every spiral "nebula" was moving away from us, which seemed really weird. Then Hubble performed the first accurate distance measurements which showed that they're really, really far away - not in our own galaxy. It soon became clear that almost everything far away from us was getting further from us. This calls for an explanation. So we get Lemaître's hypothesis - that the universe is expanding. Reversing the time axis shows everything radiating from a single point, down to a single point in spacetime around billion years ago.
A hypothesis is one way of explaining the data. As always, there were numerous. A hypothesis is considered worthless unless it makes specific testable predictions and can be falsifiable based on the data (for example, that's a common criticism of String Theory). For example, the Big Bang hypothesis was criticize on account that it couldn't account for the nucleosynthesis of heavy elements (this was later shown to be due to their formation in supernovæ, but that's a different story). There was a huge debate on all of the relevant points, involving paper after paper going through the peer-review process, each showing evidence for or against the different hypotheses.
There were, of course, predictions made by the hypothesis. Very specific predictions that would be exceedingly unlikely to occur by chance. One of them, for example, was that there would be a 2.725 degree kelvin background of microwave radiation eminating from every portion of the sky. Pretty darn specific, right? Pretty freaking unlikely to be a coincidence, right? Each of the different theories had their own predictions. The thing was, it was the Big Bang hypothesis whose predictions came to fruition. Not once, but again, and again, and again, very specific predictions of what one should observe that hadn't been prior observed. Over time, even proponents of alternative theories were forced to accept that the data fit the Big Bang. At this point, the Big Bang became the operational theory under which cosmology operates. A theory is a hypothesis which has been supported by a great deal of empirical evidence.
Does that mean that the Big Bang absolutely happened? Absolutely not! It just means that it is extremely well supported by the evidence, and no other proposed theory has come close to its predictive power.
Now, please, humor me. Go into the scientific method about your "thinking about things makes radiative energy that causes the stuff you thought about to happen like magic "theory".
For the love of Crom, am I the only one here who wants to keep the U.S. technologically competitive?
No!! Wait. How do you know that praying didn't cause the problem to happen in the first place, and that prayers aren't prolonging the paralysis? How do you know the consequences of a prayer?
People, please!! If you are going to going to bring awesome cosmic powers to bear on this problem, you need to do it responsibly. You are meddling with supernatural forces that can shape galaxies, part seas, resurrect dead people, inflict or cure cancer, turn people into columns of salt, and win football games. We have already had it explained many times to us, that these things "work in mysterious ways" and that their plans are not always apparent to us, and their minds are beyond our capacity to understand. We can never assume that they want what we want.
If you are going to call on beings of infinite power, don't you think you ought to first understand the causes and effects? Wouldn't that be prudent, in a basic "not totally reckless and negligent on a potentially PLANETARY scale" sense?
Perhaps this patient was paralyzed as retribution for some conceit of hubris on her part, as one of life's lessons. By allying with her (i.e. interfering with her enlightenment), you might be paralyzed next, whether as punishment for defying the will of the gods, or maybe even as little lesson in hubris of your own.
Ok, maybe she was paralyzed by The Great Enemy, because she was close to uttering the Word of Justice that would undo all the Enemy's plans, so by calling on the Enemy's enemy, you might be able to help her, get the Word uttered, and all evil will finally be banished from the world forever and ever. Yet it is just as likely, that she was about to utter the Word of Despair, plunging America into yet another Eight Years of Apathy, and it was only by some hero's hours-long (and expensive, due to the rarity of some of the herbs and oils used) ritual that managed to stop her, and by bringing Great Powers into this, you might bring about the Eight Years of Apathy.
It could be happening because of something as mundane as the tumor "cover story", but then whichever god answers your prayer and cures her first (you know that prayer works, but do you know how it works, how it propagates, etc?), will be owed a favor by her, which might be a horrific lifelong struggle for her; whereas without your arrogant meddling, she might have recovered naturally anyway, without any long-term spiritual debts. Or -- are you sure you truly understand all the mechanics here, and that not only have you totally mastered Law of Man, but you also have perfect insight into the Law of the Gods -- perhaps the debt will be YOURS.
If a doctor were to idly carve on her brainstem without knowing what he was doing, you would be among those crying "malpractice!" But here you are, barging in with your hasty invocations of the mightiest powers that history has ever known, using a bulldozer-the-size-of-a-mountain to swat flies on the rim of a teacup. You would purify a pint of water with a lake of iodine, poisoning the drinker. You would shoot a man for snorin' too loud, light a cigarette with a hydrogen bomb, and write a "hello world" program that compiled to a 6 terabyte binary.
I beg -- no, insist -- all those considering resorting to the extremity of prayer, to first carefully consider all the ramifications. Make sure you understand how it really works, Whom you are really contacting, what you're really asking of Them, what it truly costs, etc. You may be doing more harm than good, and you might be involving innocent third parties.
Indeed, even if it were just one person's life at stake (and it's not!), I don't think it would be too out of line for me to demand that you first prove (to reasonable degree of certainty; we don't have to get all mathematical here) that the effects will be benign. At least do some controlled stu
As copyright owner of this comment, I authorize everyone to defeat any technological measure which limits access to it.
Probably only if there was something better that they could be doing with their time, like holding a car wash to make money for the person
Sure, that's why I carefully mentioned "can't do anything about the situation" multiple times. Perhaps I should make that "can't do or are unwilling to do"; if you're not going to do the effort to set up a car wash anyway, there's little harm in throwing in a prayer. People do stuff that serves no purpose other than making themselves feel better all the time; if you have a beef with unproductive passtime, you might as well start attacking things such as relaxation, entertainment and unproductive sex.
or setting up some sort of online presence that could be helpful, or taking the same amount of time to google locked in syndrome and relay information that could be useful...
Let's not kid ourselves; those things are unlikely to be actually helpful. It's like waving a dead chicken, or, you know, praying. Sure, there's a nonzero chance that the poster will appreciate something that comes out of the online presence or the Google search. There's also a nonzero chance that the poster is religious or just open-minded, and really appreciates all the offers of prayers.
Maybe it's because I'm getting tired, but I couldn't make a lot of sense out of the rest of your post. You seem to be going though some strange kind of internal dialogue, something like:
You: "I don't like your religion because it tells people to do such-and-so." (other than praying, which by itself is a pretty damn harmless way to pass the time)
Imaginary religious opponent: "but... but... I pray for people who are in trouble, so I'm a good person, so surely your 'legitimate beef' is invalid."
If this is what you're thinking, I have to point out that I've never heard a religious person using that as an actual argument in an actual discussion, and if they do, it must be pretty rare, so it sounds a little bit like a strawman (or should I say windmill) argument.
What kind of nonsense is this?
The original article makes it absolutely clear that she is able to communicate. The only person who should decide whether she will live like this or be unplugged is the woman herself.
That was "should". In the real world, the costs of keeping her alive matter. But suggesting to unplug a human being who can think and communicate is in no way different from advocating murder.
Hale and happy as I am today, I think that I would like to be unplugged in her situation. But I may feel very different if I actually were in the state she's in.
So, try to help the original poster and his sister with their predicament, and please keep your sociopathic tenancies to yourself.
No good deed goes unpunished...
For some reason, my post lost the "14" in "14 billion years". :P
For the love of Crom, am I the only one here who wants to keep the U.S. technologically competitive?