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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?"
but there will be many people praying for you
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.
Somehow I knew that "pull the plug" was going to be the first piece of advice from the Slashdot crowd.
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.
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.
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.
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.
I know it's too late now, but I would have looked into this:
http://www.ted.com/talks/yoav_...
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.
How about the wishes of the fully conscious patient? Maybe that should prevent him from doing what you think is right.
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.
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.
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.
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.