How Science Found a Way to Help Coma Patients Communicate
September 5, 2017 10:16 AM   Subscribe

After suffering serious brain injuries, Scott Routley spent 12 years in a vegetative state. But his family were convinced that he was still aware – could a pioneering ‘mind-reading’ technique prove them right? [slGuardian]
posted by ellieBOA (20 comments total) 19 users marked this as a favorite
Well, I know it's supposed to be uplifting, but that whole scenario is fucking terrifying.
posted by leotrotsky at 10:39 AM on September 5, 2017 [17 favorites]

What ever happened with the discovery that Ambien wakens some patients (temporarily) from a coma? Do doctors try it anymore?
posted by Bee'sWing at 11:23 AM on September 5, 2017

What a weird coincidence, I learned about this study during psychology grad school and was just talking about it to someone at the weekend. I'd slightly misremembered it though, I thought they'd had people think about their childhood homes. It is kind of horrifying to think about all the people in supposed vegetative states who may in fact have been semi-conscious though.
posted by theseldomseenkid at 11:31 AM on September 5, 2017 [1 favorite]

Well, I know it's supposed to be uplifting, but that whole scenario is fucking terrifying.

No kidding. All I could think about was the Title (and premise I suppose) of the Harlan Ellison short story "I Have No Mouth, and I Must Scream" and it's just... terrifying is a good word, yea.
posted by RolandOfEld at 11:32 AM on September 5, 2017 [5 favorites]

I don't quite understand how they communicated with him, was it all just yes no questions or were they able to further refine their technique?
posted by From Bklyn at 11:42 AM on September 5, 2017 [1 favorite]

This so much reminds me of the Oliver Sachs book/Robin Williams movie "Awakenings". Just with less radical/dramatic semi-recovery.
posted by oneswellfoop at 11:46 AM on September 5, 2017 [1 favorite]

Right, and then what's the ethical requirement? If they're happy, just shut in, keep them on the machinery keeping them alive I mean OK I guess? But if they hate their existence, is euthanasia acceptable? I mean, we do end of life care _terribly_, this doesn't help, y'know.

posted by Kyol at 12:08 PM on September 5, 2017 [1 favorite]

I don't understand how they can say he appeared vegetative if he was watching hockey for 12 years. Surely that means he had control over his eyes.
posted by srboisvert at 12:16 PM on September 5, 2017

> I don't understand how they can say he appeared vegetative if he was watching hockey for 12 years. Surely that means he had control over his eyes

A woman I know was described as being in a vegetative state even though she could sit up, move her hands, and say some words (that weren't really relent to her situation, as I recall).
posted by The corpse in the library at 12:31 PM on September 5, 2017

“Scott, are you in any pain? Do any of your body parts hurt right now? Please imagine playing tennis if the answer is no.”


“If Scott is responding, we should see a response here,” I said, touching a particular spot on the shiny glass screen.

As we peered at the display, we could see all the folds and crevices of Scott’s brain – the healthy tissue and the tissue left irreparably damaged by the speeding police cruiser 12 years earlier. Then we began to notice something more: Scott’s brain was springing to life, starting to activate. Bright red blobs began to appear – not randomly, but exactly where I was pressing my finger on to the computer screen.
This gives me pause. First, why phrase the question as a negative? Why not say "Please imagine playing tennis if the answer is YES."? I feel like that would be a bit more affirmative. Secondly, I'd really like to see the difference between a Yes and a No. I am not familiar with reading fMRIs, but I have to imagine there is some subjectivity there. I'd love for someone with a bit more knowledge and expertise to assuage my concerns about this.
posted by Rock Steady at 12:31 PM on September 5, 2017 [4 favorites]

I am no longer up-to-date on the precise definitions of PVS but my understanding is that the eyes do open and close and there may be some tracking of motion. It's just not responsive, like "move your eyes to the left now".

I'd love for someone with a bit more knowledge and expertise to assuage my concerns about this.

There is a link to this article from the words "playing a game of tennis" that explains for laypeople, but if you have access to science journals there's lots of material out there on this. I imagine there's a more exhaustive writeup of this particular story in the associated book too. There are review boards and codes of ethics in play, they didn't just make it up.
posted by Lyn Never at 12:45 PM on September 5, 2017 [2 favorites]

Our own John Scalzi has a somewhat terrifying book about a pandemic of a disease that often ends up with people that have "locked in syndrome". It is, of course, called Locked In. I highly recommend it. (Despite the shudders the idea of the condition brings.)
posted by Samizdata at 1:15 PM on September 5, 2017 [4 favorites]

Thanks for posting this. Most of us can't imagine being stuck in a broken body, but it makes me wonder if they asked Scott whether he wanted to be kept alive. I always think that they should play great music, and radio shows for people in comas, just in case.
posted by theora55 at 2:02 PM on September 5, 2017

Scientists certainly aren't immune to confirmation bias either. I wonder if this will turn out to be as much wishful thinking as facilitated communication... Here is another slGuardian that seems to call fMRI brain activity into question.
posted by Gable Oak at 2:16 PM on September 5, 2017 [2 favorites]

I can certainly imagine being in a broken, locked-in body and kept alive for years. Since childhood, that scenario has been one of my chiefest horrors. I would much, much prefer death over such a fate, but these things do happen in this wonderful world of ours.
posted by Anticipation Of A New Lover's Arrival, The at 3:26 PM on September 5, 2017

I immediately thought of Roald Dahl's "William and Mary". I wonder how they asked him questions like his current caregiver's name. I'm guessing everything had to be reduced to a binary this/that.
posted by web-goddess at 7:33 PM on September 5, 2017

So in the last year or so, I've learned that consciousness is a funny thing. Brains are still black boxes, for the most part. And there are no easy answers.

I've been in the unusual position of getting to observe a man who was never expected to leave the hospital breathing on his own progress from an official Persistant Vegitative State to officially being only Severely Brain Damaged. The difference is obeying commands. He would answer questions before they changed his diagnosis, but it wasn't until he would follow a command that it was official.

It is hard to tell just how "there" he was before he became responsive. For a while he knew that he had died, but he hasn't mentioned it for a few months, so he may not remember anymore. He knows his name, he knows his wife, he knows some friends and family from before. He doesn't seem to remember me, even though I have visited nearly weekly for the past year. Conversations with him are generally endless rounds of introductions. He has a sense of humor, he understands politeness, he can be manipulative. He has feelings and opinions. He listens to converations, and when there's a break, will sometimes say something that indicates that he was listening and understood what was said, to some degree.

You never know what he's going to retain though. One of his caregivers left a Muppets DVD playing on his computer, the menu animation repeating, for what may have been a couple of hours. This was a few months ago. He still hates Miss Piggy and will tell you that she hurt him. Having established that we are not Klingons, and don't want to be Klingons, he and I decided that we are still in a blood feud with Miss Piggy.

He wanted to be kept alive, no matter what. He got what he wanted. I wonder if he would still have wanted it, if he knew what kind of hell it has been for his wife. I don't know. I didn't know him before.
posted by monopas at 10:19 PM on September 5, 2017 [7 favorites]

Stories like this are why the Terri Schiavo case still haunts me.
posted by MexicanYenta at 5:34 PM on September 6, 2017 [1 favorite]

I'd love for someone with a bit more knowledge and expertise to assuage my concerns about this.

The author completed his PhD at the Institute of Psychiatry, London; moved to the Cognitive Neuroscience Unit at the Montreal Neurological Institute, McGill University; was awarded The Pinsent Darwin Scholarship by the University of Cambridge in 1996; returned to the UK to work at the newly opened Wolfson Brain Imaging Centre, Cambridge; moved to the Medical Research Council's Cognition and Brain Sciences Unit, Cambridge to set up the neuroimaging programme there; was awarded MRC tenure in 2000 and made Assistant Director of the MRC CBU in 2005, with overall responsibility for the onsite imaging facilities; was awarded a $10M Canada Excellence Research Chair in Cognitive Neuroscience and Imaging at The University of Western Ontario; and over the last 20 years, has published more than 250 peer-reviewed scientific papers.

But you want somebody with 'a bit more knowledge and expertise'?
posted by obiwanwasabi at 9:24 PM on September 6, 2017 [1 favorite]

Sorry, that might have been unclear. I would like someone who has more knowledge and expertise than I have to tell me if these extraordinary claims from a scientist who has built a career on his ability to communicate with unresponsive patients are indeed backed up with extraordinary results or not. As Gable Oak mentions, there is a lot here that reminds me of facilitated communication and other "breakthroughs" that seem too good to be true.
posted by Rock Steady at 4:47 AM on September 7, 2017 [1 favorite]

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