Laureys, a neurologist at the University of Liege in Belgium, published a study in BMC Neurology earlier this year saying Houben could be one of many cases of falsely diagnosed comas around the world. He discovered that although Houben was completely paralysed, he was also completely conscious — it was just that he was unable to communicate the fact.
h/t Kevin
Kinda like how you are still alive and aware as they harvest your organs for Organ Transplant.
Imagine what some so called coma cases brains are trying to express, as their body parts are harvested one by one..
Anyone who has worked, as I have in my capacity as a physical therapist, with neurologic patients, knows that misdiagnoses are rampant, often made on the fly by consulting medical staff who barely acquaint themselves with their charts, but who firmly believe that M. D. stands for Minor Deity. Pharmacogenic signs and symptoms are often the basis of diagnoses of dementia, for example, because so many doctors prescribe medications with potent psychotropic side-effects (often when interacting with other drugs, prescribed by other physicians) without carefully considering such potential side-effects or interactions. Coma patients are often consigned to the medical trash heap as “vegetative” cases, because the reports of family members and ancillary staff are ignored. That is why the deliberate–and cruel–denial of nourishment and water to patients like Teri Schiavo, based on a convenient diagnosis of “persistent vegetative state,” is metaphysically, if not always legally, a criminal act. When in doubt, choose life (Deuteronomy 4:11).
This is from 2009.
I remember it being a great story when I read about it in 2009.
Last i heard, the guy is no longer able to communicate though.
Ahhh yes, more “settled science”, which told us he was effectively dead for all these years.
How many “settled cases” of comas where “science” told us it was OK to cut off life giving care, were actually state sponsered killings of helpless, trapped individuals.
I can really emphathise with this guy for a very good and very personal reason. I would still rather be starved to death than spend 23 years (or even 1 year) trapped in my mind. My personal directive will take care of that.
Blood-chilling. Unthinkable. Carlos Perera, with respect, wouldn’t it be better to die than to spend 23 years like that?
Here is an update on the story:
http://news.bbc.co.uk/2/hi/8526017.stm
Apparently even the original researcher no longer believes the communication is genuine.
“By holding Mr Houben’s forearm and finger, the therapist was said to feel sufficient pressure to direct her to the correct keys on the keyboard.”
“It’s like using an Ouija board,” Arthur Caplan, a professor of bioethics at the University of Pennsylvania, told Associated Press on Friday. “It was too good to be true and we shouldn’t have believed it.”
In reply to Black Mamba: First, I think that you and Rocky View Redneck are positing a false dichotomy. The choice is not between living trapped in your mind and death; many therapies exist nowadays to help bring patients out of comas. The problem is that many people who would benefit from those therapies are consigned to the “irreversible vegetative state” category, for the reasons I gave in my original post; they are essentially abandoned by the world of medicine. Second, psychologists have actually researched the issue of people’s perception–when they are still of sound mind and body–of the value of continued life after major physical or mental disability versus the perception of people who have suffered such disabilities; in the latter case, the overwhelming majority prefer to go on living, as long as the physical pain of their state is not unbearable; my own clinical experience bears this out. Along these lines, I would add that some of the greatest _joie de vivre_ I have ever found has been in physically and mentally handicapped patients, who savor the simplest sensory and emotional experiences much more deeply than most able-bodied, sound-minded adults seem capable of doing.
There are many young people in full health that commit suicide. Using their standards to evaluate the threshold of adequate quality of life for someone else….
first we gotta get rid of Stephen Har… er, Stephen Hawkings.
didnt they do a Law&Order CI episode about this? ya, my fav detective Bobby Goren set up a spoof to make the murderer think his comatose victim was ‘communicating’ via eye movements in order to trap him.
seriously, this brings up the possibility of another criterion for brain dead.
I know some CONs good candidates to try it on.
@Carlos perera
Hey in my church andi have said this so many times before , the handicapped people or mentally retarded or completley vegitative ones usually have the most fun and are so full of life and a zest for living it is shocking to regular humans but that uis becasue we take our motor skills for granted they don’t and they live there lives to the fullest savoring every last drop ..it is truley amamzing …it is also very funny to speak with them and listen to the genuine confidence general lack of knowledge that they are handicapped ..i lovei t i enjoy hanging out with them almost more than some of my friends …for example if i put americas funniest home videos on with my friends i might get a chuckle out of them ….where’s ifi watch it with handicapped people they will genrally LTAO or at least laugh quite abit…anyway choose life alway’s and i think in these cases it should be assumed that the person want’s to live not die “trapped in the bodies”
Regarding Teri Schiavo, her husband could have gotten a divorce and moved on with his life as he already had de facto. He wanted her dead before another guardian and technologically advanced care could be assigned. It was his life on the line if she would become empowered to reveal what really happened.
the choice is between being dead, or dead and conscious of the fact you are “dead”, pull the goddamn plug…Puleez
They call it “locked in syndrome”, don’t they? I don’t know anything about Mr. Houben (and no offense to him), but this reminds me a bit of Koko the gorilla (who I’m inclined to like because she had a pet cat). There’ve been famous attempts to demonstrate that she understands words, knows sign language and so on; there’s an excellent chance that’s it’s all just people seeing what they want to see.
Anyway, they have instructions to pull the plug on me if I get a hangnail.
(@11:26 – that’s “whom?”, genius. You’re wrong about everything else, too.)
http://www.skepdic.com/facilcom.html
I wonder if this isn’t another case of “facilitated communication” which swept the medical world in the 1990’s,but was proven more wishful thinking than reality.
Dozens of parents were convinced their severely autistic children were communicating through a facilitator,but when a double blind test was done,the truth became obvious.
Sometimes the truth is heartbreaking,and goes against all our wishes and hopes.
Man; Deja Vu!!
http://www.imdb.com/title/tt0067277/plotsummary
This underlines the dilema faced by so many…..
An associate passed away this past week….12 minutes of cardiac arrest and resuscitated.
After a day or so, after no evidence of brain activity, the family decided to pull the plug.
That after 23 years, no-one had checked the Houben fella for brain activity is criminal.
Detection of brain activity which is similar to the common EKG is not a new technique.
Unresponsive, eyes, lack of speech or movement is not really cutting edge methodology for establishing consciousness.
This is how I feel when I try to communicate with liberals.
This is how I feel when I try to communicate with liberals.
There was a Hitchcock episode about this.
This is interesting. I remember going to a presentation on this subject about six years ago. I think the talk was given by John Connolly, who was then at Halifax, but is currently at McMaster. He discussed a case he had been involved in at the local hospital. A young man had been brought in after being stabbed in the head. He was in a coma, and had been pretty much written off by most of the hospital staff, who preferred to direct limited resources to more promising candidates. Connolly decided to run a few ERP trials (Event Related Potential), which can be used to assess higher cognitive function, and is essentially non-invasive (it requires putting a cap with electrodes on the patient’s head, with hair gel. The patient looks at a computer screen and answers questions. I’ve done it – it’s harmless — I had to wash my hair after but that’s about it. Psych departments often are looking for paid subjects if anyone has the time and the inclination).
Connolly ran semantic differential tasks — this involves playing recorded sentences to the patient that contain a surprise ending “The children went to the park and they swang on the donut”. Normal participants with good language skills will show a blip called the N400. The comatose patient showed this blip, and Connolly used the data to argue for diverting more resources towards the patient’s rehabilitation. The patient eventually left the hospital and was able to ressume independent living (as I remember).
Connolly’s webpage:
http://www.humanities.mcmaster.ca/~linguistics/faculty/profile_connolly.html
Summary here:
http://www.biomedcentral.com/1471-2377/10/11
I like this because it shows what linguists can accomplish if we ignore everything that Chomsky ever wrote. And although I agree that wishful thinking is a tremendous problem in psychology and linguistics research, it is hard to fake raw data for ERP studies, although I sure nothing is impossible. Plz forgive typos, I have computer issues.
Not sure which hospital you work at Carlos, but at the institutions I’ve worked in the medical staff are very cognizant of pharmacological effects and the potential artifacts they may create in assigning “brain death” to patients. The issue is taken very seriously. In addition, organ harvests, undertaken following discussion with the family, are undertaken with a level of general anesthetic on board sufficient to abolish spinal cord reflexes in order to maintain autonomic stability. And a level of GA sufficient to abolish spinal reflexes has gone way past the point at which higher cortical functions (esp consciousness) have been abolished. Your putative scenario may make for great Hollywood theatre. It doesn’t reflect reality by my observation.
I witnessed a young burn victim declared brain dead due to swelling that had pressed on his brain stem, apparently this was confirmed through a CT scan.
The Mother of the child refused to believe it – she had been communicating with her son while waiting for the paramedics to arrive and knew his brain was functioning perfectly fine 2 days earlier.
The mother ordered that he be taken off all drugs, including the ones used to paralyze burn victims, to make a determination on her own. Her sons burns were severe – 3rd and 4th degree burns on a very high percentage of his very young body and his prognosis was not good from that standpoint alone.
The doctors complied and stopped all drugs, she went to see her son and lo and behold he spoke – he mouthed that he loved her.
That child is now a young man in his twenties.
In reply to DrD:
I did not mean to imply that most physicians are maladroit or uncaring, else no one would survive a hospital stay . . . but a minority, far more than should be tolerated, are, in my experience (which is based on having worked at not one, but many hospitals). The phenomenon of what I term “reflexive prescribing,” is far too common, as is “diagnosis on the fly.” The former is, thankfully, often–but not always–compensated for by alert nurses, pharmacists, or even knowledgeable family members; the latter results in the blatant disregard of DSM diagnostic criteria when evaluating patients’ mental states; far too many diagnoses of dementia are made based on the most casual examinations.
As to my “putative scenario” of improperly harvested organs, I think you are conflating me with another commenter above. That is an area of hospital practice completely outside my field and my experience, which, I admit, does not lend itself to making “great Hollywood theater.”
They should have NEVER uplugged Terry Shaivo. I hold vigil every year for her. To hell with those liberals!!!
This is frightening and heartening at the same time.
How often has the plug been pulled for people who could have pulled through?
Thanks for the information, Carlos Perera.
Remember, the science is settled. Don’t question it.
Why would they need to travel to US for help. I was told that the US med. is worlds worst. :}
Osumashi Kinyobe asks “How often has the plug been pulled for people who could have pulled through?”
Not as often as full life support has been kept on for people who couldn’t pull through.
The technique used to allow this person to “communicate” is called “Facilitated Communication” in which a “facilitator” guides the subject’s hand in typing on a touch screen keyboard. There’s some -considerable- controversy over its use with autistic kids and people like Mr. Houben. I like to keep an open mind, but the odor of quackery is growing around Facilitated Communication. (It smells like ducks.)
Advanced EEG techniques and brain-directed computer interfaces might end up being the answer to this problem, unfortunately its early days yet and that kind of gear is expensive. Not everybody can be in a program like that.
To be brutally frank, I very much doubt there’d be anything left of Mr. Houben’s mind after 23 years of locked-in syndrome. People go stark raving mad after being in solitary confinement for a couple years, this would be -so- much worse.
I’d be willing to be proven wrong, but it would take more than Facilitated Communication to do it.
And yes, I’d yank my own plug in a heartbeat sooner than go through that. 23 years of not being able to wipe your own butt, or your nose? Or scratch? Can you say nightmare?
Carlos Perera said: “Anyone who has worked, as I have in my capacity as a physical therapist, with neurologic patients, knows that misdiagnoses are rampant, often made on the fly by consulting medical staff who barely acquaint themselves with their charts, but who firmly believe that M. D. stands for Minor Deity.”
I’ve worked a bit with neuro patients, and I generally found the diagnoses by consulting neurologists etc. to be rock solid. They knew a hell of a lot more about it than I did, and neuro was my specialty. I had the edge in diagnosing gait/function issues, but then I spent hours with the patients, not minutes.
As PTs one of the things we need to bear in mind is that MDs have three times the training and ten times the workload we do. Screw-ups are surprisingly rare, given the crap they put doctors through in Ontario hospitals.
I’ve seen -nurses- screw patients over by the carload though, and I’ve been directed to do the same to patients myself by PT management. Gotta bill them hours, y’know.
That’s why I’m a house painter these days. You should look into it, scraping paint in the cold is better than trying to keep from choking some fat battleaxe that just dropped your patient on the tiles because she couldn’t be bothered to do a proper bed-to-chair transfer. Less liver damage, better sleep too.
Phantom — cost really isn’t the issue as far as ERP/EEG data collection is concerned. Most hospitals have this equipment already — it was once used for diagnosing stroke and epilepsy and it is still used for some clinical purposes. ERP/EEG was partly phased out when MRI came in is my understanding. MRI offers better spatial resolution and is hideously cumbersome and expensive. ERP has better temporal resolution, is much cheaper, and the equipment can be loaded onto a couple of trolleys. Also, a monkey can collect ERP data (I’ve done it). The cost of keeping a comatose patient in the hospital must be at least a grand per day. If ERP can be used in rehabilitation of coma patients the savings could be enormous. The problem is one of education, research, and undestanding. No one person has a complete grasp of how the brain works.
Fridge Logic, thanks for reminding me about the use of ERP’s in testing coma patients. One of the patients I see in hospital when I work there is a young woman with a massive brain injury who’s in a vegetative state. Every time that I do a hospital shift I visit her and get the impression that there’s no-one there. She’s young enough that her brain just might rewire itself into some functional state over time. My last suggestion was to repeat her EEG in case she was having ongoing partial seizures complicating her brain recovery but ERP’s would be much more informative.
One of the problems I find in medicine is that specialists tend to jealously guard the little areas that they alone control and are unwilling to let generalists play around with their toys. It’s a matter of if you can’t bill for a test then it doesn’t get done. Coming from a research background this is a very strange attitude to me as I was used to going wherever the evidence pointed using whatever techniques were necessary to do the next stage of the experiment.
@ Fridge Logic:
Indeed the ERP N400 studies are being done at McMaster in the General’s CCU. It was an interesting talk and subject.
Before someone is determined to be brain dead and support withdrawn or organ salvage numberous tests are done. Sometimes people are in fact dead, and we have to accept that. It is, after all, natural or if you are inclined to believe in God, his way…
Fridge Logic, you’d be interested in some of the “lie detector” PET and SPECT scanning they’re doing in the States. We don’t have PET for neuro here in Ontaristan, only OHIP coverage for specific cardiac and cancer diagnoses. You want the brain scanning, you go to Buffalo. Or Rochester Minnesota more likely, Mayo has all kindsa crazy stuff.
Loki said: “One of the problems I find in medicine is that specialists tend to jealously guard the little areas that they alone control and are unwilling to let generalists play around with their toys.”
Its true, but I dunno how much of that is guys being jerks and how much is plain old overwork. Around here they have one neurologist covering three hospitals, 24 hour call on weekends. Crazy.
langmann, I was thinking of some US Airforce studies being done for pilots to control aircraft directly by brain wave interface. A “locked-in” patient could use a thing like that, pretty much nothing else could work I would think.
I googled ERP, here’s a page from Mac.
http://brain.mcmaster.ca/ERP.tutorial/ERP%20Components.htm
Possibly could be might be the kind of thing I’m thinking about, program a computer to register a “yes” or a “no” based on signals in certain brain locations corresponding to specific large muscle groups.
I know, I know, this is serious.
http://www.youtube.com/watch?v=j5b_V68mQ9k
The Phantom — I misunderstood you. Here’s a link to EEG interfaces that let you play computer games. Not quite what you were proposing, but they only cost about 300$ and you can use them to recreate episodes from Star Trek.
http://emotiv.com
http://www.youtube.com/watch?v=T7CiiWBwMgw&feature=player_embedded
Loki — I hope the best for the young woman.
Thanks Fridge, that’s very cool. Exactly what I meant too.