Any way to communicate with a patient with Locked-In Syndrome?

Factual Questions
1

Are there any new, innovative or reasonably successful ways to communicate with a patient suffering from Locked-In Syndrome, following a stroke? I have a family member in this predicament and what we are using is frustratingly slow and low tech.

Disclaimer: I am not asking for medical advice, only communication advice. My locked-in family member has an army of doctors and a speech therapist, but so far I haven’t seen anything more innovative than pointing to letters on a white board , or saying the alphabet out loud until he blinks ‘yes’ for the correct letter. The former is very confusing for him and the latter gets sentences like: I AM NOT HGFE MSRRU.

If there’s something more effective out there, I’d like to ask his team about it.

2

Other than what is in the article? Just never forget that the person can hear and understand you. Try to anticipate what you would want to know under the same circumstances.

This is unbelievably sad.

3

Saw your question this morning.
My late husband used the low-tech auditory scanning method to communicate primarily through the four years following the stroke.

He was able to blink his eyes and move his right middle finger. Since he lived in nursing homes and hospitals, we used different flat switches Velcroed to an arm brace to get help when he needed something. Because of this, it was never functional to be attached to a computer 24 hours a day.

Higher tech devices we used to communicate: A Dynavox – which was programmed to scan through the alphabet in our row system. This was slower than a person running through the alphabet and was rarely utilized. Jimmy hit the switch attached to the arm brace when the Dynavox got to the letter he wanted. Insurance paid for this. It did not pay for all the switches we bought through Tash (I think is the company’s name).

We were in Georgia and worked with Dr. Philip Kennedy at Neuro Signals in Atlanta. There are You Tube videos of his work. While this computer system was great and I believe the technology can help some, it didn’t work out well for Jimmy. The brain stem stroke left him with blurred and double vision, so he couldn’t see the computer screen.

There are some programs available to use brain waves, etc.

This chart was always with Jimmy. It was printed on business cards and laminated, so staff could have it. This was his primary way of communication and everyone used it. It’s a patient right to be able to participate in one’s own care, so the staff has to use it to communicate with their patient!

We also provide da chart of abbreviations. Such as Jimmy spelled out BT for breathing treatment, SC for suction, BM for bowel movement.

Here’s the chart:
Jimmy will BLINK when he wants to spell.
Ask him if it is a vowel, row 1, row 2 row 3 or a number. He will look up yes for the correct row, look down for no.
Then recite the letters in the row. He will BLINK when you say the correct letter or number. Write down the letter. Then begin again for the next letter, vowel, row 1, row 2, row 3 or number.

Vowel: A E I O U Y
Row 1: B C D F G H J
Row 2: K L M N P Q R
Row 3: S T V W X Z

This warning also was at the bottom of the chart:
*Be careful about guessing. A lot of wrong guesses often leads to frustration for both the speller and Jimmy. *

We also emphasized the need to ask Yes or No questions. You can’t ask: "Are you comfortable and then, “Should I move your leg?” You have to ask Are you comfortable and then move forward with the yes or no answer.

I wrote about the progression of his communication on my blog: http://getyouroxygenfirst.blogspot.com … Recent posts have been rants about the health care reform debate. I apologize I can’t provide you with a specific link this morning. I’ve got to get ready for work, but wanted to share this with you. I know how crucial information is.
Best of luck and if I can be of help, let me know.
Stacy

4

Stacy, a remarkable post. Thanks for the info.

5

Ok, honestly, I think it’d be more humane to put these people out of their misery. Death is natural. Being locked into your body with no ability to move isn’t. It sounds fucking frightening, and you are extending this person’s pain through your irrational attachment to misguided values, and your own selfish desire to not be hurt yourself.

6

I have no answer to your question, but I’m going to tell you a story.

Several years ago, I was working as a *registry nurse. I was called to a local ICU. When I arrived, I was assigned to a young man who, while still requiring critical care, had been moved to a private room down the hall, due to his “crazy” family. He had a devastating brain injury. His eyes drifted slowly from side to side constantly, no eye contact. He was completely paralyzed, so no movement. He was diagnosed to be in a persistant vegetative state.

Even so, his family was sure he was “in there.” The regular nursing staff was convinced they were dreaming. It had become a battle of wills, so I was assigned to him.

The family tried everything they could think of or had read about to stimulate him, without visible change.

Being fresh to the case, I gave them what hints I knew. I wasn’t convinced by them or the staff. I was keeping an open mind. Besides, I have always talked to my patients, no matter what their condition, so I saw no harm in trying.
The family really liked that and asked if I would come back. The staff agreed.

I worked with him for several weeks, without seeing a change. Even though I was begining to think he wasn’t in there, I still talked to him whenever I was with him.

He didn’t know his wife was newly pregnant when he was injured. She delivered a few days before I started caring for him.

Whe the baby was a couple weeks old, she asked if she could bring him in so his dad could see him. I got consent from everyone who needed to. I had to convince the doctor that, while it probably wouldn’t help, it couldn’t hurt.

Mom brought the two week old in and after telling the kid his son’s name, she and I carefully laid the babe in the crook of his arm.

What happened next changed my ambivalence. Tears pours from his eyes. Nothing else. He cried. He was in there.

*Rent-a-nurse

7

I don’t know if I would put it so crudely - but: I do have to ask - are these poor souls not constantly in a state of depression, panic or even complete madness due to their inability to move or communicate efficiently? Do they ever blink out messages expressing a desire to be killed rather than have to bear their horrible state any longer?

Or do they eventually adjust to it - maybe even grow to somehow appreciate it?

I would imagine that, for a time, the victim of this condition would be in an inconsolably desperate, frustrated state. I’m aware that a man actually wrote a book about his experiences with this (by blinking his eyes) which was made into a movie with Johnny Depp. I would never be able to watch that movie or read the book (even just glancing over this thread makes me want a whiskey, a cigarette and a Xanax.) But out of grim curiosity I must know - what is the state of mind of someone “locked in?”

8

My brother’s father-in-law was a tyrant, but then, he’d been one before… he’d get angry when people paid attention to his grandson rather than to him, for example - and when you’re trying to potty train the kid, you have to pay attention to his urgencies! He definitely had no interest in being “put out of his misery;” in his case it wasn’t a stroke, it was Lou Gehrig’s disease so gradual (although very fast) and he reached several points at which he’d said “if I ever get that bad, don’t treat it” - and every time once he got that bad, he wanted the treatment.

It was 2 years from noticing the first symptom to death, and he was unable to talk or communicate except via the methods already described here for more than 1 year.

9

Uh, dude…

If the patient can communicate - and I believe we have a duty to make a real effort to determine that - then the PATIENT decides, not YOU. Just because YOU would not want to live like that does not mean someone else would find it intolerable.

Or should we just off Stephen Hawking right now for your benefit? Granted, he not quite locked in at this point, but pretty much only his mind is left working. Oddly enough, he seems willing to continue living despite that.

You’re not talking about an unconscious, unaware person. Locked-in syndrome means the mind is working. While I have no doubt some would find it intolerable, I find your statement of just “put these people out of their misery” to be heartless and bigoted. Tell me, is it YOUR fear that one day you might be in that situation speaking, rather than any real concern for the afflicted?

10

Research suggests that they are not:

In the only review of quality of life, the authors found that a series of seven patients with locked-in syndrome had a worse quality of life on the Spitzer quality of life index than cancer patients but better than terminally ill patients; of the five who completed the general health questionnaire, three were depressed, but they all stated that they would want antibiotics if they developed pneumonia.18 In the longest surviving group of patients reviewed (after 11 years) 54% had never considered euthanasia, 46% had previously considered it, and none had a “not for resuscitation” order.14 The finding that locked-in syndrome survivors who remain severely disabled rarely want to die14 counters a popular misconception that such patients would have been better off dead.

One of the more shocking things about working with folks with disabilities was for me the gap between their perception of their quality of life and the perception of those around them – often including medical professionals and also the people who love them and are charged with their care. It is not comforting to know that the people who are supposed to care for you think you might be better off dead…

For the OP: The future is BCI, or was when I last looked, it may have all changed since then. The only way I know – er, knew – of to get it though is to enroll in a trial. Here is some reading for you, possibly it can lead to something. There is a free software download; there may have been an update since then but I didn’t see one.

11

stacysjensen, thank you so much. I forwarded your post on to the appropriate people and I am very grateful you took the time to write it. Thanks also to Marienee, picunurse and everyone who responded.

Alex_Dubinsky, whatever my loved one’s wishes turn out to be, they will be respected. Or, …what Broomstick said.

12

I happened to be chatting with my doctor recently about people who are near death. He told me that nearly all his patients, including the ones who had earlier stressed that they did not want heroic measures and did not want to wind up connected to loads of machinery with no recovery reasonably possible, said they wanted the heroics when the time came (if they were able to communicate).

And it does make a kind of sense, too. Such an existence sounds very bad, but if it’s all you have left, it may still look like the best choice. After all, you’re going to try being dead for an awfully long time anyway.

13

There is a machine which is controlled by the person’s mind. It only has 2 alternatives though, which is YES and NO. You can also use the blinking response.

14

Not bad, considering that the computer you’re typing on works off of basically 2 alternatives. If someone can express just ‘yes’ or ‘no’ to some sort of linguistic state machine, I’d expect they could generate meaningful sentences as fast as someone could type on a Blackberry, maybe faster eventually.

15

Well I am Locked In. And yeah it’s depressing sometimes but I don’t want to be “put out of my misery”. There are ways that go way beyond the letterboard for communication including some programs that enable you to operate a computer with just eye movement. How long has this person been Locked In?

16

Think Steven Hawking “wants to be put out of his misery”?

17

He’s been locked-in for 10 days. May I ask how you’re posting, blinkie?

18

Besides what others have said, I recall reading some time ago that they have a fair amount of emotional flattening. Emotions in part are a thing of the body ( anger tenses particular muscles, etc ), and they are detached from their body enough that their emotions aren’t as strong so they don’t suffer as much as you’d expect.

19

If he can accurately regulate the length of blinks to distinguish between dots and dashes, you could teach him Morse code. Would have to learn it yourself as well, of course.

20

Why does it appear that nobody using T9 (predictive text) technology to speed this process up (assuming the patient can read) for both patient and assistor - moving from 26 choices to about 10 would make the process go faster and be more accurate (with better guessing).

Add in a bit of statistical machine learning on the T9 side and the data rate could really improve. It could eventually be automated with a blink detector or eyeball tracking.

And for an analysis of locked-in syndrome from the patients point-of-view, “The Diving-bell and the Butterfly” by Jean-Dominique Bauby. A memoir transcribed by letterboard and blinks.

Si