I believe reasonable skepticism is warranted any time a major “medical miracle” story breaks. But there comes a time when skepticism becomes something else, an ideological tool to keep society from drawing ethical conclusions that the skeptic might oppose.
I 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 misdiagnosed as unconscious for 23 years. A certain skeptical meme quickly ssued forth claiming that the whole thing is merely a “facilitated communication” scam, in which the real communicator is the therapist, not the patient. The Huffington Post’s resident utilitarian bioethicist, Jacob–Let’s Farm Fetuses!–Appel, who worries that the Houben good news might prevent similar patients from being dehydrated or euthanized, also contends that Houben can’t really be communicating, and suggests a test to smoke out the chicanery. From his column:
…I confess that I am still highly suspicious of the details of this alleged medical miracle–and particularly of the messages that Houben purportedly types with the help of his aide…Houben’s cognitive abilities can be tested in numerous ways–such as reading him a sentence when his helper is out of earshot, and then asking him to retype it–so eventually we may learn whether his story is authentic, a matter of wishful thinking, or even a cruel and manipulative hoax. Until that time, the media and the public should retain a healthy skepticism.
Oops, apparently they’ve already done just that. From a story in the AP:
But Laureys’ team showed Houben an object while his aide was taken outside, and when she came back in he was able to write it down correctly, said Prof. Audren Vandaudenhuyse, a colleague of Laureys. “So all that has been checked and confirmed, so we are sure it is him who is talking,” Vanhaudenhuyse said. Houben’s mother, Fina, told the AP her son has been communicating for three years and she believes no one is guiding him. “At first he had to push with his foot on a sort of computer mouse which only had a yes-no side,” she said in a telephone interview. “Slowly he got better and developed through a language computer and now communicates with this speech therapist holding his hand.”
Dr. James Bernat of Dartmouth Medical School said he could not comment on the facts of Houben’s case specifically. However, he called Laureys “a very rigorous scientist and physician … one of the world’s leaders” in the field of brain imaging in people with consciousness disorders.
The Hougens case unquestionably gets in the way of the utilitarian agenda to rid us of burdensome cognitively and neurologically disabled people and/or to gain a license to use them as natural resources in organ harvesting or experimentation. But Houben rehumanizes a subset of patients–the unconscious and those apparently so–who have been denigrated and marginalized for many years by the dehydration crowd. I think his story just might cause enough pause to keep us from writing these people off, and in the process, save some lives.
November 25th, 2009 | 2:42 pm
It is not humanizing to be denied a legitimate voice, and that is exactly what a Facilitated Communicator does. The FC in this case has already stated that Mr. Houben is only able to communicate through her, and that she feels guilty even going on vacation. He is entirely dependent. How is that “humanizing”?
If Rom Houben is communicative, there are many better techniques that can be used to aid his communication independently.
November 25th, 2009 | 3:34 pm
“Cognitively disabled.” Hey, that’s neat. How about calling short people “vertically challenged” and pregnant rape victims “non-consenting fertilizees” while we’re at it. “Cognitive disability” IS kind of a broad term, seeing that it could mean anything from mild dyslexia and poor vision up to and including anencephaly. Why not call vegetating vegetating? It’s more honest and to-the-point.
Wesley J. Smith Reply:
November 25th, 2009 at 4:18 pm
No, History Writer, it’s demeaning, dehumanizing, and marginalizing, an epithet. There are no human cucumbers.
November 25th, 2009 | 3:42 pm
It’s funny, these “healthy skeptics” aren’t skeptical about pulling the plug. Where’s their skepticism when the claim is made that people who move their eyes and have sleep and wake states are not really aware?
Personally, I try to be skeptical in the direction of those who erode human dignity than towards those who would preserve it when there is doubt.
November 25th, 2009 | 4:30 pm
Intending to respond to HistoryWriter, I tried to write some comparable “call it what it is” kind of statements, directed at people with other disabilites, at minorites, and people of various religions.
But I could not bring myself to do it. I guess I am not as cool, edgy, liberal and open-minded as HW is, to be able to refer to people in offensive slurs and insist that it is enlightened to do so.
November 25th, 2009 | 7:34 pm
Perhaps we should euthanize people like HW, who, clearly, have no hearts.
November 25th, 2009 | 9:14 pm
Facilitated communications has been around for years, and has been discredited by those working in Mental Retardation because of cases where a retarded, autistic child with cerebral palsy suddenly started to type intricate stories of abuse…using correct spelling and syntax.
Some parents were even arrested or had their children removed after such complaints.
Then some questioned how the children could learn to spell, or could hit the board correctly when the board was not within their ability to view it (i.e. they were looking up, not at the board).
Now it is thought that the facilitator, not the person, might have moved the finger, either deliberately or subconsciously.
Even Wolf Wolfensburger was skeptical of fc, and no one can be as prolife as this professor who fought for the rights of the retarded for years.
I am not sure if the tests described prove anything. If a person had not talked or spelled for 20 years, there should be misspellings. Were there?
And did the communications work with a different “facilitator”?
November 25th, 2009 | 9:53 pm
holyterror and safepres may be misunderstanding HistoryWriter. (For that matter, HistoryWriter may be misunderstanding himself.) He appears to be a frequent reader of this blog. He certainly is engaged in the issues under discussion. As my wife says, “The opposite of love isn’t hatred, it’s indifference.” He’s asking all the right questions. In time, he may longer give all the wrong answers.
November 25th, 2009 | 10:05 pm
“Oops, apparently they’ve already done just that.”
Not so fast.
The person making the claim of demonstrated valid consciousness is Vandaudenhuyse.
Vandaudenhuyse is a co-author colleague of Laureys. I wonder whose side he will take?
http://www.ncbi.nlm.nih.gov/pubmed/18669218?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=3
We need to apply rigorous, critical scientific standards and high scrutiny to determine the truth.
One of the princicples of scientific inquiry is repeatability.
Is this repeatable by an outside scientific investigator? I hope so; I wish so; but the data isn’t stacking up.
I therefore remain skeptical and am doubtful Houben is concious until legitimately verified otherwise.
Wesley J. Smith Reply:
November 26th, 2009 at 1:54 am
David: He has been proven conscious by the bran scans and his ability to communicate independently of the current system of using the helper. Some doubt the communication facility now being exhibited, charging it is facilitated communication, which some believe is invalid. But there is no real controversy about his being aware. These are respected researchers. Your conspiracy theory is getting a bit thick.
November 25th, 2009 | 11:39 pm
safepres: I’d suggest a lobotomy for you, but the doctors would have to spend too much time looking for a brain.
November 26th, 2009 | 12:15 am
Wesley: You say “[t]here are no human cucumbers.”
I’m sure you’re familiar with anencephaly, the absence of all parts of the brain except a rudimentary brain stem. If all the features that you’ve cited in the past as proof of human exceptionalism are missing, and you’re left with an organism that’s essentially a lump of cells that can neither see, hear, think, feel or move, is there really any difference between that state and a vegetative one? You can me “heartless” if you like, but let’s be realistic. If you were a doctor and knew an anencephalic fetus was developing in a patient’s womb, what would you tell her about her possible options?
November 26th, 2009 | 4:43 am
[...] I believe reasonable skepticism is warranted any time a major “medical miracle” story breaks. But there comes a time when skepticism becomes something else, an ideological tool to keep society from drawing ethical conclusions that the skeptic might …Read Original Story: Houben Case: Resisting Rehumanizing Cognitively Disabled Patients – First… [...]
November 26th, 2009 | 10:33 am
But I can’t imagine the torture of being trapped in a body for over 20 years and not being able to communicate. I, personally, would rather be dead.
Wesley J. Smith Reply:
November 26th, 2009 at 11:09 am
He’s clearly glad he isn’t dead.
November 26th, 2009 | 1:45 pm
Here’s my minor attempt to think clearly about this case: ‘Bioethics’ and the Houben Case
November 26th, 2009 | 9:08 pm
Fine, Bobo, but it isn’t your place to extrapolate by then assuming that EVERYONE ELSE would rather be dead, too.
November 27th, 2009 | 5:09 pm
HW-maybe after my lobotomy they can take out the half of your brain that deals with processing empathy and give you some of that part of my brain to compensate for your deficiency in that area. I’m feeling generous, since you clearly need it more than I do.
November 27th, 2009 | 6:18 pm
safepres: Thanks, but no. [History Writer, I have deleted the rest of your comment. The V word applied to human beings is not acceptable any longer on this blog, except in the context of an unfortunately named medical diagnosis. Please govern yourself accordingly.]
November 27th, 2009 | 6:48 pm
“conspiracy theory”?
I have stated that Mr. Houben may, or may not be, conscious.
I find it interesting that the following facts are considered conspiratorial:
1. facilitated communication is rejected by many prominent experts:
http://www.apa.org/divisions/div33/fcpolicy.html
2. Vandaudenhuyse is not an outside expert, he is a colleauge, co-author:
http://www.ncbi.nlm.nih.gov/pubmed/18669218?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=3
I find it interesting that my healthy skepticism, which is directed towards determining the truth regarding this terribly afflicted man, whom I want the best for, would be met with such disparaging attitudes. Generally the quest for the truth, which most scientists pursue to whatever end, is held in high regard. This is why scientists seem to place a premium on methods for determining the truth, focused on eliminating as much doubt as possible.
There are overzealous scientists and out-right hacks out there which we must all be wary of.
Do we have “proof” of Mr. Houben’s ability to currently exhibit higher consciousness? Are brain scans enough to definitively determine consciousness?
Do we have verified, outside party confirmation of his ability to communicate?
Are we going to rush to the conclusions that feel good, or will we wait patiently while we dig for the truth regarding what could be one of the most remarkable individuals on the planet?
Laureys is making an extraordinary claim, let us test that he is right.
Laureys, being faced with serious skepticism from scientists, has attempted a response on November 27. I understand he is dealing with a patient and thus limited, however his response is less than impressive:
http://www.newscientist.com/article/dn18209-steven-laureys-how-i-know-coma-man-is-conscious.html
Out of respect for Mr. Houben, we ought to pursue the truth.
November 27th, 2009 | 7:17 pm
David-It’s not particularly “respectful” to continue trying to dehydrate someone who has been proven to be conscious.
November 28th, 2009 | 12:40 am
History writer, the definition of human is as follows; A member of the genus Homo and especially of the species H. sapiens. My son was human. Humanity is not only defined by intellect. One does not cease to be human due to a level of disability. Why would one be less human due to disability? Does someone in the last stage of dementia loss their human status? No, they do not. ‘That lady has dementia’ We do not say ‘that thing on the bed’. Look what you say may make sense to you, but when studied from a philosophical standpoint the big picture becomes much more complex. Even when we die we are thought of as a person, a man, a woman, a child; human. So, therefore being ‘self aware’ is too simple as a definition for the term. In addition to that to be human also has a genetic basis. I am human…my DNA is that of a human. Just think about it…You may well die in the advanced stages of Alzhiemers. Many of us will. Before you die…at what point will you cease being human? History writer, you speak from a position of ignorance.
November 28th, 2009 | 1:45 pm
Safepres,
Mr. Houben has not been PROVEN to be conscious. Earlier I posted a Science article explaining the complications and difficulties of defining consciousness, and how brain scans may, or may not, be reliable.
Laureys changed the diagnosis that several other physicians had made (to be fair, as far as I can determine, Laureys is not one who utilizes debunked facilitated communication for diagnoses and assessments). One diagnosis by one physician does not a truth make. Laureys may be correct, he may be wrong. We need significant evidence to determine the truth, not faith based emotionalism from political pundits. Should we not get such concrete evidence, we need to consider erring on the side of caution, considering the familiy’s desires, and continuing the investigation. Remember, not all physicians are scientists, some operate for profit, fame, or prestige, not truth.
Also, I will restate what I have said earlier. I personally do NOT want to see Mr. Houben terminated, dehydrated, marginalized, etc, etc in any way. I want him to be healthy, recover, or at least able to communicate with us so we can help him in this tragedy. I do not see enough data to suggest that he can communicate with us. He may or may not be conscious – which I define as cognitively aware.
I do agree that it is not respectful to dehydrate an alive human being against his or her wishes, regardless of the level of consciousness by that person. I am glad this is not currently happening to Mr. Houben.
November 28th, 2009 | 7:32 pm
Gee, Wesley, I see PC is alive and well at SHS. But why stop with the v-word when there are so many others to ban? The f-word (as in “fruit” because it lacks human characteristics)? The s-word (“spaghetti”) because it denotes limpness)? The “b-word,” such as in “bump” (on a log)? Might it be permissible to express the opinion that someone could be one enchilada short of a blue plate special, or would that be demeaning to Mexicans? Or that someone’s cheese may have slipped off his plate, or that his deck may be missing a few cards? Let’s get the ground rules down so that I can reply to safepres in a politically correct manner. After all, I didn’t start the p*****g contest. Do you have any words of caution for him as well?
Wesley J. Smith Reply:
November 28th, 2009 at 7:35 pm
The V-word, is as bad as the C-word for women and the N-word. The F-word would be banned if it referred to gays. You know very well what is a pejorative and what isn’t. Don’t be an A-word.
November 28th, 2009 | 7:50 pm
Lee: You say “my son was human.” Have you had first-hand experience with an anencephalic?
November 29th, 2009 | 12:02 am
HW: Have YOU? [had "firsthand experience with an anacephalic'"]
November 29th, 2009 | 12:03 am
Oh, and HW, just for the record, I’m a woman.
November 29th, 2009 | 1:08 pm
safepres: You are? Wow, what an argument for bachelorhood.
November 29th, 2009 | 1:16 pm
safepres: to answer your question, yes I have firsthand experience with anencephalics. I was associated with the people who closed down Willowbrook State Hospital in Staten Island (New York). If you had seen what was hidden away in some of the back rooms I can guarantee you wouldn’t be arguing against abortion.
November 29th, 2009 | 6:44 pm
HW-I am also affiliated with groups that work to improve living conditions for people with mental illnesses so that they are not treated like crap and warehoused, and who, unlike you, ALSO believe in welcoming people with disabilities into our world rather than “solving” the problem by not allowing them to be born.
November 29th, 2009 | 6:45 pm
And, just like you are skeptical that Houben is concious, I am skeptical that you ever participated in anything of that nature.
November 29th, 2009 | 6:46 pm
Re: bachelorhood-Ditto. I wouldn’t marry you if you were the last man on the earth and God ordered me to in order to repopulate the earth.
November 29th, 2009 | 7:37 pm
safepres: Marry? Repopulate the earth — with you? I don’t recall asking, but thanks anyway even if the thought is, shall we say, a bit louche. Not to mention that I’m way too old for you and that another lady beat you to it 43 years ago. Still, I can understand if you’re getting desperate and I’ll be happy to scout around for a likely prospect if you want.
BTW, what’s your experience with anencephalics?
November 29th, 2009 | 8:01 pm
HW-I don’t have to have experience to know that people with anencephaly are human beings like everyone else. Speaking of which, if your spouse becomes severely disabled later in life, will you view her as having lost her personhood?
November 29th, 2009 | 8:04 pm
Oh, and, it’s too bad you’re already married because I had some great prospects for you, such as Gonzo the muppet.
Wesley J. Smith Reply:
November 29th, 2009 at 10:33 pm
Stop already! I was going to delete this, but Gonzo was too funny. But please stop.
November 29th, 2009 | 11:09 pm
Okay, I guess you’re right, Wesley, although, it was fun while it lasted. ;) All’s well that ends well, HW. Truce, okay?
November 30th, 2009 | 8:07 am
OK, Truce. It was fun though.
November 30th, 2009 | 1:28 pm
Hello! I am new to this board. I have some background in philosophy and religion, and I work providing supports for people with developmental disabilities and/or mental illness. These thoughts are off of the top of my head, so please forgive any lack of clarity.
I have thought quite a bit about these issues, and I would love to hear your thoughts about the following issues/questions: 1) I fully understand the limits of utilitarianism if taken to the extreme; but as a practical matter, let’s say we had thousands (tens of thousands?) of minimally conscious folks who required intensive life support, should our society be expected to foot the bill for sustaining them? Would they be housed together? I realize I am not defining “minimally conscious,” but surely there is a practical limit even “if” we believed that some level of consciousness were at play. Even if Mr. Houben is (and this is not completely clear to me) communicating at some level, I might include him (and those similar to him) in my hypothetical.
2) This might be more rhetorical, but why do so many folks assume that those who are “locked in” in some fashion would always want to communicate that they wish to continue living? It already strikes me that one could deduce anything from such a state of affairs (i.e. I want to die, I might want to die, I need help in dying, etc.). Even if they might wish to continue living in one sense, I could easily imagine not wanting to live due the discrimination and degradation faced by folks with disabilities.
3) On the other hand, for those who are skeptical of Mr. Houben’s communicative state (and I am one of those), what are the standards for believing someone is truly conscious (in the way one might associate with full personhood)? That is, how would the lines be drawn? One might think that many folks with severe autism are not fully conscious; and given some of the associated communicative styles, it might be difficult to adduce evidence to the contrary. To go further, one might believe that a “typical” person is not conscious even if they tested out as being so (as in Descartes’ evil genie example)—it could all be a contrived deception. So, one is left at some level with some type of leap of belief whether one is a skeptic or supporter regarding Mr. Houben.
4) Lastly, hypothetically speaking, let’s say that we know that Mr. Houben is fully conscious and that one out of every 100,00 cases of people diagnosed as having persistent vegetative state will actually be conscious, although it will be difficult to determine which one. Would we really act on policy that would be devised to protect that one person? This would seem to be an untenable precautionary principle; that is, if we used such a principle in regards to driving cars, we would never allow anyone to drive; furthermore, we would not be able to convict many folks who commit crimes.
I look forward to hearing from any of you—thanks!
December 1st, 2009 | 8:44 pm
Although Mark Stalnaker may like to believe that only 1 of 100,000 PVS cases is a misdiagnosis the real ratio is much higher.
Badly paralyzed people may be unable to speak.
Since most skeptics never learn to allow for verbal garbling people who cannot pronounce words “properly” may be called “vegetables;
like Terri Schiavo,who tried to talk.
We don’t know how many chemical sensitives are doped unconscious by versions of “routine sedation” that are more than inappropriate for them…Nancy Dillon’s “coma” could have killed her had her mother not been heard more effectively than Terri Schiavo’s mother was.
Since we don’t know how many mistakes have been buried claims that misdiagnoses are only one in 100,000 are very dangerous.
December 1st, 2009 | 11:39 pm
Ms. Rothstein: With due respect for your concerns over PVS misdiagnosis, Terri Schiavo was categorically NOT misdiagnosed. Her autopsy conclusively showed…
(1) her brain itself weighed only 615 g, only half the weight expected for a female of her age, height, and weight, an effect caused by the loss of a massive amount of neurons.
(2) Extensive damage to nearly all brain regions, including the cerebral cortex, the thalami, the basal ganglia, the hippocampus, the cerebellum, and the midbrain. The neuropathologic changes in her brain were precisely of the type seen in patients who enter a PVS following cardiac arrest.
(3)Throughout the cerebral cortex, the large pyramidal neurons that comprise some 70% of cortical cells – critical to the functioning of the cortex – were completely lost. The pattern of damage to the cortex, with injury tending to worsen from the front of the cortex to the back, is also typical. There was marked damage to important relay circuits deep in the brain (the thalami) – another common pathologic finding in cases of PVS. (http://en.wikipedia.org/wiki/Terri_schiavo)
To cast significant doubt on these conclusive medical findings is logically and empirically unsupportable.
December 1st, 2009 | 11:57 pm
Lee writes: “…Why would one be less human due to disability? Does someone in the last stage of dementia loss their human status? ”
I know I am entering this discussion late but would only suggest that there can be a legitimate debate over the validity of making a distinction between a human being and the characteristics (or the physiological potentiailies) that allow a human being to engage as a person. The last stage of dementia (or any disease or condition) clearly CANNOT turn a human being into a ‘non-human’ organism; neither physiologically nor ontologically. But likewise that same person cannot be said to retain many (if any, in severe cases) of the qualities that allowed him/her to meaningfully engage with others and his/her environment. Does this viewpoint entail automatically ‘pulling the plug’? No. Does it automatically imply that there is no value in such individuals continuing to passively receive the loving care of others? No. It does not preclude, however, that medical treatments may be not discontinued in particular instances where the individual clearly did not want to continue being force-fed and force-medicated, whether such wishes are documented in a directive or vouched for by a trusted family member.
Let me also suggest that proposing such a distinction does not by definition make one a eugenicist or a non-respector of the sacrality of life. I am neither.
December 2nd, 2009 | 12:09 am
HistoryWriter: I have read many of your posts in this forum and respect your intelligence and resonate with many of your opinions. I have no doubt that you are several rungs above me on the IQ ladder.
That said, I want to make a suggestion: that you try to avoid increasingly polemical exchanges with our more conservative brethren and sistren in this forum. I understand the reflex (and am guilty of it in the past, as well), but its a lose-lose because your insightful “babies” are usually lost in the bath water.
That said, it is IMO always okay to tweak Wesley; he dishes as well as he takes. E.g. “Don’t be an A-word”
(That was a good one, Wesley.)
;)
Wesley J. Smith Reply:
December 2nd, 2009 at 12:37 am
It’s always okay to tweak Wesley, within the limits of taste, of course.
December 2nd, 2009 | 12:19 am
Mark Stalnaker: Kudos on a very thoughtful post. I would disagree with your “1 in 100,000 misdiagnosed” estimate based on the increasing body of evidence to the contrary, but this contention does not invalidate your other reasoned points about whether all such afflicted individuals would automatically want to persist in such states.
4 posts in a row… a personal record for me. Or clear evidence that I am putting off a long-overdue project. You be the judge :)
December 2nd, 2009 | 12:24 am
WSJ: “The V-word, is as bad as the C-word for women and the N-word. The F-word would be banned if it referred to gays.”
But what are your feelings about the M-word as it applies to gays & lesbians? Or is only the reality of this particular word offensive?
Okay… now I am going back to work.
December 3rd, 2009 | 10:38 am
“I could easily imagine not wanting to live due the discrimination and degradation faced by folks with disabilities. ”
Then it seems to me we should do everything to see that such discrimination and degradation does not happen. Which is to say, instead of abandoning the sufferer to his despair. Agreed?
Also, on the topic of anencephaly: clearly it is impossible to survive this way. But when, in another forum, I suggested neonatal hospice as an alternative to abortion I was met with deafening silence. ??
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