Ask Slashdot: Communication With Locked-in Syndrome Patient? 552
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?"
My condolences... and some other thoughts (Score:3, Interesting)
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.
Re:As painful as it is... (Score:4, Interesting)
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)
Re:concentrate on what she needs (Score:4, Interesting)
Seems like the first comment with good advice I see. And don't rush things, the brain is a complex structure with some capabilities to restructure and repair. Time, company, physiotherapy, nervous activity controls movement but movement of the limgbs induces nervous activity too and may help to regain what seems lost.
Let her see and feel and maybe even feed her baby.
Re:Solution (Score:4, Interesting)
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.
Re:Yes, there are methods available (Score:4, Interesting)
There's the EPOC controller...
http://emotiv.com/epoc/feature... [emotiv.com]
Don't expect any miracles with brainwave stuff, though, it's not like in some sci-fi movie. It can be hard to train your brain to control it, and it usually takes a lot of focus to do simple tasks and may sometimes do stuff you don't want. Anything based on EEG sensors is going to be extremely coarse, reading the average output of billions of neurons at a time. But it's a possibility.
The eyegaze device mentioned below sounds like a good possibility.
ERP (Score:4, Interesting)
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.
Comment removed (Score:3, Interesting)
Re:I'll get flak for this (Score:4, Interesting)
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".