We hear constantly that people diagnosed as being persistently unconscious should be dehydrated to death because they are not “persons,” or are actually “dead”–and so should be available for organ harvesting. We hear that even if the family resists, futile care theory should permit bioethics committees to impose unilateral withdrawal. And we hear this even as repeated studies demonstrate that 40 or more percent of patients diagnosed as PVS really aren’t.
But the dehydrating lobby merely reply, “That’s even more reason to do it! Imagine the suffering!” Well, imagine you are in the locked in state (awake and aware but unable to communicate) and hear doctors telling your family to kill you. Now that is terror.
But there are abundant reasons to treat people with profound cognitive disabilities as fully human beings. First and foremost, because they are us. Second, because we don’t know enough about how the brain works to know that there won’t be some regeneration to permit eventual restoration of some function. But also, because there is always hope.
Case in point: We hear from time-to-time, for example, that a person in PVS awakened. And now in Belgium [NOTE, this corrects original post that incorrectly stated this happened in the UK], a man misdiagnosed as unconscious for 23 years is now telling how he was fully aware all along. From the story:
A car crash victim has spoken of the horror he endured for 23 years after he was misdiagnosed as being in a coma when he was conscious the whole time. Rom Houben, trapped in his paralysed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them – but could make no sound. ‘I screamed, but there was nothing to hear,’ said Mr Houben, now 46, who doctors thought was in a persistent vegatative state. ‘I dreamed myself away,’ he added, tapping his tale out with the aid of a computer.
Doctors used a range of coma tests before reluctantly concluding that his consciousness was ‘extinct’. But three years ago, new hi-tech scans showed his brain was still functioning almost completely normally. Mr Houben described the moment as ‘my second birth’. Therapy has since allowed him to tap out messages on a computer screen.
Houben is here today only because he wasn’t dehydrated to death. There is no doubt he went through a horrendous experience, but thanks to treating him as a fully equal human being by caring for him all those years and giving him tests late into his disability–explicitly refused to Terri Schiavo–he is here today to tell tale and live the rest of his life.
And for goodness sake, whatever you believe about these issues, don’t talk in the presence of PVS or other apparently unconscious patients as if they aren’t there. Rather, always treat such people as if they can hear you, because sometimes they can.
November 23rd, 2009 | 11:34 am
[...] Continued here: Reason Not to Dehydrate: Man Speaking After 23 Years in Locked-In … [...]
November 23rd, 2009 | 12:22 pm
[...] This post was mentioned on Twitter by ProLifeBlogs, ProduceNetTV. ProduceNetTV said: RT @CO2HOG: Reason Not to Dehydrate: Man Speaking After 23 Years in Locked-In State http://bit.ly/5UZuvo [...]
November 23rd, 2009 | 1:54 pm
[...] Read more here: Reason Not to Dehydrate: Man Speaking After 23 Years in Locked-In … [...]
November 23rd, 2009 | 2:28 pm
[...] posted here: Reason Not to Dehydrate: Man Speaking After 23 Years in Locked-In … Categories: Object, Speaking Tags: artie-lange, first-things, green, later-run, [...]
November 23rd, 2009 | 3:16 pm
“Misdiagnosed” as being in a coma — for 23 years? You’re kidding, of course. Considering that brain activity atypical of a coma is readily detectable, in an EEG I think his doctor needs to go back to med school, or maybe back to grade school. So what’s the point — other than this is probably “the exception that proves the rule?” Are you saying that if we wait long enough everybody who’s vegetating is going to wake up (that is, other than “at the last trump..”?
November 23rd, 2009 | 3:56 pm
No doubt someone will argue that the man WAS suffering the whole time and perhaps would have been better off dead than locked into a body that was unable to communicate even the most basic consciousness.
Perhaps others will say they, themselves, would rather be dead than live in such a way.
Both sentiments will usually be based in an unexamined prejudice that takes one’s own “able” state for granted.
November 23rd, 2009 | 4:42 pm
I am so glad that you posted this article. We are so arrogant when we think we can possibly know what goes on in the mind of someone who is in a PVS. This man shows clearly that it is often a case of just not knowing how to communicate at their level. The same kinds of creative strategies have helped unlock people from severe autism.
It chilled me to read his comment “I screamed but there was nothing to hear”. My 4 year old son said almost exactly the same thing after his near drowning. His terror only lasted a minute, think of 23 years of it!
November 23rd, 2009 | 4:50 pm
Yes, misdiagnosed. It’s not as easy as you presume. Even the NYT is reporting experts admitting a 40% misdiagnosis. http://www.nytimes.com/2009/11/24/world/europe/24iht-coma.html?_r=1&pagewanted=print
November 23rd, 2009 | 7:01 pm
I’m sure Michael Schiavo is breathing a sigh of relief that this wasn’t discovered in 2005. Whew!
God bless Terri. I still pray for her. I wouldn’t want to die if I was either of them.
November 23rd, 2009 | 8:59 pm
I am a nurse. I have cared for a man whom was in an automobile accident many years ago. He was considered to be in a PVS or Coma. I sensed his consciousness was present. I worked with him 12 hours a day, 3 days a week for 4 weeks … as my orientation to this particular floor.
I was able to get him to respond verbally and to replicate that response for the MD’s. I had told him to say “Mom” … because it is EZ to do.
He did … and his entire course of treatment was changed. Instead of being sent to a Skilled Nursing Facility he was sent to a rehab facility. He rehabilitated to a state of independance.
This young man had been diagnosed with irreverseable brain stem damage and is prognosis was to be in a PVS until he died. He was decorticate and deserabate posturing (for those who know what that means) It is a significant sign of persistent brain damage.
This is NOT to say that all brain injuries have residual conscious awareness because the do NOT.
Comparing my patient or the man in this article to Terri Schiavo is a mistake. It is just as misleading as the diagnositic error of the man in this.
Kudos to this man. What a hero! God bless you.
November 23rd, 2009 | 9:05 pm
Does Rom Houben really have locked-in syndrome? The video shows a facilitator using his finger to type a message, as he’s not even looking at the screen–is he really typing, or is the facilitator doing it via the ideomotor effect?
November 23rd, 2009 | 9:38 pm
@Laura
Mrs Schiavo has been missing half of her brain. Check the scans of her brain.
November 23rd, 2009 | 9:40 pm
Jeanne: Thank you for loving your patient. That’s being a NURSE! There is no question that Terri was not in a locked in state. But I think her dehydration was a profound injustice, based on reasons I have written about extensively and won’t repeat here. Thanks.
November 23rd, 2009 | 9:41 pm
She was denied advanced imaging as requested by the family. But that isn’t the point. The point is we shouldn’t be dehydrating these people to death.
November 24th, 2009 | 12:32 am
Just on a point of information: I believe this man (Rom Houben) is Belgian, not British.
November 24th, 2009 | 12:47 am
You are correct. I read it in a UK paper and made a bad assumption. Thanks for the point of information.
November 24th, 2009 | 1:23 am
I am wondering along the same lines as Jim Lippard above. In one clip his eyes are closed and he is moving his finger (or rather, his finger is being held by someone else). Let’s make sure that the person holding his finger cannot see the screen and see if he still communicates rather than some Ouija board effect. I want to see the original published medical account of this before we jump to conclusions. It shouldn’t matter if he can or cannot communicate as to the value of his personhood. If this is a hoax, it will do damage to the cause. If not a hoax, the pro-death side will not care.
November 24th, 2009 | 7:39 am
[...] http://www.firstthings.com/blogs/secondhandsmoke/2009/11/23/reason-not-to-dehydrate-man-speaking-aft... [...]
November 24th, 2009 | 9:29 am
[...] man diagnosed as being in a coma for 23 years who was actually conscious the entire time. Wesley Smith discusses the implications of this story on the practice of purposely dehydrating people in [...]
November 24th, 2009 | 1:14 pm
It is clear in this article that the Great Jehovah still communicate with HIS creation when it doesn’t look like they are communicating with us. I have seen a couple programs about this but lived through three. My mom and two of my cousins. Prayer is spiritual and we as humans are spirit, soul and body. In most cases we want people to respond to us from their soul when they have always spoke to us based on what they are first and that is a person with a spirit. We come in contact with them physically by sight first and then we come to know them by their spirit. Again the Lord speaks to us and is the author of life and only He knows when one should die. So because of the money issue we have the medical profession trying to tell families what to do because of the money factor. Thanks for the space to communicate this thought.
November 24th, 2009 | 1:19 pm
As the chasm between scientists and laypeople grows, a niche market for psuedoscience, superstitions, mythology, and emotions opens.
This story is such an example.
How Mr. Houben is able to “communicate” through “facilitated communication” – a technician holds his hand and “reads” him.
http://www.cnn.com/2009/HEALTH/11/24/coma.man.belgium/index.html?eref=igoogle_cnn
http://www.apa.org/about/division/cpmscientific.html#4
From the APA: “THEREFORE, BE IT RESOLVED that APA adopts the position that facilitated communication is a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy.”
Very sad that in 2009 we still fall hook-line-and-sinker for such hocus pocus, and mass media propagates such extreme ignorance.
Better thinking and reasoning skills exhibited by society would be most welcomed.
I therefore propose the following experiment:
Have an interviewer ask Mr. Houben a set of 5 standard questions that each require a brief essay answer using one facilitator. The interviewer tells Mr. Houben that an hour later he will be asked the same 5 questions, so Mr. Houben should try to remember his answers, roughly. An hour later, use a DIFFERENT facilitator, ask Mr. Houben the same 5 questions and see if the answers are the same as the first go-around.
November 24th, 2009 | 1:29 pm
The typing while having his hand held is “facilitated communication” (FC)
FC has been discredited for decades.
The person doing the typing is the one holding his hand, NOT the patient.
I predict a book deal will follow…
November 24th, 2009 | 2:08 pm
The awareness was proved by a brain scan that showed near normal functioning.
November 24th, 2009 | 2:12 pm
As I stated earlier, it was first determined he wasn’t PVS by brain scans, showing a near normal mental function. For some, amazingly, that is bad news.
November 24th, 2009 | 3:17 pm
It is certainly not bad news if he’s genuinely been determined to have conscious awareness, except for how he was treated prior to that diagnosis. But that is entirely consistent with the messages being produced by a process of facilitated communication *not being from him*, but from the facilitator–in which case the harm to him may be further compounded rather than corrected.
The video footage seems to be very rapid and accurate typing by the woman holding his finger, who is looking at the keys, while he is not. To properly treat this man with respect, it should be verified that he, and not the facilitator via ideomotor effect, is the one doing the communicating. And that’s entirely independent of the validation of his conscious awareness via brain scan.
BTW, fMRI has been used successfully to distinguish between active and passive movements, as well as to collect information about why hypnotically-suggested movement feels subjectively to be involuntary (it actually has commonalities with both active and passive movement). That sort of model could also be used here, as well as an alternative method for him to communicate yes/no answers via brain activity that would not be subject to the concerns that a demonstrably misleading method like facilitated communication raises.
November 24th, 2009 | 6:44 pm
Jacek-
I suppose this guy missing most of his brain and not knowing until he went to a doctor doesn’t fit into the world-view you have? True, he was a gov’t worker, but I can’t say I’d support dehydrating EVERYONE that works for the government to death….
November 24th, 2009 | 7:01 pm
I love how folks are willing to believe the guy is really in a coma, based off… of a philosopher-bio ethicist or a stage magician seeing a video clip where the guy’s hand is being held?
Wow, in depth research, there, folks.
November 24th, 2009 | 7:23 pm
The brain scans are inconclusive for advanced cognitive functioning and activity. Anybody that is “functioning” – breathing (as Mr. Houben was), executing autonomous movements however slight (as Houben was), having circulation (as Houben was), undergoing metabolism (as Houben was), maintaining thermal balance (as Houben was), etc, etc, will have an active brain scan.
This was published a few weeks ago. We do not know how to definitively determine consciousness – this gets us one step closer, maybe. It is an argument and suggestion, not proof, not a law, not a theory:
http://www.sciencemag.org/cgi/content/abstract/science.1180029v1
Facilitated communication is about as good as having the local witch doctor read animal entrails and make a prediction.
It is sad this man, Mr. Houben, who is alive, is being used as an emotional pawn. Perhaps he is aware, perhaps he is not.
November 24th, 2009 | 7:30 pm
Foxfier: That’s a straw man–my point isn’t that he’s really in a persistent vegetative state, but that facilitated communication is an unreliable mechanism for obtaining accurate information from him. And that’s not based just on the comments of a bioethicist and a stage magician. See, e.g., this review of the science literature on FC: http://www.springerlink.com/content/w27884261r287m86/
November 24th, 2009 | 9:14 pm
It doesn’t look like facilitated communication to me. This from the AP: “More searching finally got her in touch with Laureys, who put Houben through a PET
scan that indicated he was conscious. The family and doctors then began trying to
establish communication.
A breakthrough came when he was able to indicate yes or no by slightly moving his
foot to push a computer device placed there by Laureys’ team. Then came the spelling of words using his finger and a touch-screen attached to his wheelchair.”
November 24th, 2009 | 9:28 pm
Wesley:
The video at this site shows the facilitator typing for him while his eyes are completely closed and he appears to be sleeping:
http://news.ninemsn.com.au/world/975121/belgian-coma-man-was-just-awake-for-23-years
This looks exactly like FC.
You’re right that the passage you quoted about PET scans and a foot pedal doesn’t sound like FC.
November 24th, 2009 | 11:02 pm
I suspect this is a case of “both-and.” Mr. Houben reportedly made rudimentary indications in answer to yes-no questions with his foot. But his more complex (and dramatically reported) communications, which appear to be mediated via FC, warrant cautious interpretation at the least. It would be a shame for the underlying message of his story — that diagnosis of PVS is fraught with uncertainty — to be overshadowed or diminished by dubious embellishments.
November 25th, 2009 | 12:41 am
Jim Lippard -
My statement that folks are following the fairly uninformed “professional” opinions of a philosopher and a stage magician is not a straw man, it’s a statement of fact.
Rather than dealing with the statements of the doctors and scientists involved, or other first-degree sources, folks are looking at a video that has a very good chance of being staged by the reporters to look good and trying to draw conclusions from that.
The only likely straw man here is your insistence on dragging in video clips from the news as the prime evidence, when the guy has been in therapy for the last three years after brain scans showed he was conscious.
November 25th, 2009 | 12:29 pm
[...] think we have reached that point in the Rom Houben case. Houben is the awake and aware man who made world headlines when it was proved that he was [...]
November 25th, 2009 | 12:34 pm
Foxfier: I don’t think looking at the primary evidence we have available–video footage–constitutes a “straw man.” Your inference that some of this footage was staged is a possibility, but you’ve not provided evidence to support that claim. (If they staged it to “look good,” as you say, they clearly failed.)
I’m open to multiple possibilities here, but you seem to simply be dismissing valid concerns without evidence.
My own reporting on this includes quoting and citing Dr. Laureys and Mrs. Wouter (click my name on this comment for direct link).
November 25th, 2009 | 1:45 pm
I don’t think looking at the primary evidence we have available–video footage–constitutes a “straw man.”
Except that you disregard the less flashy evidence, ie, testimony of the doctors and techs involved. It’s less emotionally satisfying than looking at some easily digestible evidence and coming to a contrary conclusion. It’s also notable that the only counter-claims that reporters have been able to find are of similar quality– ie, “I watched a video clip and am going to go entirely off of that!”
As the old joke goes, folks will accept that all stars are just like our sun, but they’ll have to touch a bench if the sign says “wet paint.”
November 25th, 2009 | 2:48 pm
Moreover, I included Bernat’s comment that the doctor here is very respected internationally. Fear of ethical impact seems to be loose.
November 28th, 2009 | 2:19 pm
[...] lot of people seem emotionally invested in Rom Houben not actually being conscious. But all the evidence is on the other side. Now, his doctor Steven [...]
December 7th, 2009 | 11:21 pm
I read an interview with the doctor who says they did some testing and were satisfied that the patient was initiating the communication, not the facilitator.
Links
Blogs
Find Us
Contact