Rom Houben

Rom Houben is a comatose Belgian man who was falsely assumed to have the ability to type through facilitated communication, a scientifically discredited technique. Houben was presumed comatose and in a vegetative state for 23 years after a near-fatal automobile accident, but whom according to several of his caregivers, was conscious and paralyzed during the entirety of his hospital stay.[1][2] In 2010, the claim that Houben was able to communicate was rejected when communication could not be replicated with a different facilitator and by hiding the object to be identified from the view of the facilitator.[3]

Background

Houben was diagnosed with total locked-in syndrome by Belgian neurologist Steven Laureys in 2006 with the help of modern brain imaging techniques and equipment.[4] He now apparently communicates by typing into a keyboard with his right hand supported by a communication facilitator.[5][6] However, the claims that Houben is able to communicate by typing have been widely disputed.[7][8][9][10]

Houben's case is used to question the current methods of diagnosing vegetative state and to arguments against withholding care from such patients.[4][11] However, some bioethicists believe that the case, if confirmed, may provide stronger arguments for withdrawing or withholding from vegetative patients.[8]

While Houben was diagnosed in 2006, his case, first reported in a BMC Neurology paper in July 2009 without him being named,[11] was only brought to wider public attention after German weekly magazine Der Spiegel ran a story on it in November 2009 which was subsequently picked up by media outlets around the world, receiving extensive coverage.[12][13][14]

Controversy

Bioethicist Jacob M. Appel of New York University has suggested that the case may be either "a matter of wishful thinking", or "a cruel and manipulative hoax" that will be used by political conservatives in their public relations campaign against the right to die.[8]

The method used to allegedly communicate with Houben is known as "facilitated communication",[6] which the Association for Behavior Analysis International, the American Academy of Child and Adolescent Psychiatry and the American Association on Mental Retardation have called a "discredited technique", the use of which is "unwarranted and unethical".[7] Skeptics, including PZ Myers and James Randi, contend that facilitated communication does not involve actual communication with the disabled, but rather with the people playing the role of the "facilitator".[15] Randi writes that claims of Houben's facilitated communication amount to a "cruel farce."[9] Video footage shows the "facilitator", Linda Wouters, holding Houben's hand as his finger is being used to type at a rapid pace, even though the subject appears to be slumped over with his eyes closed.[16] Neurologist Steven Novella argued that there was "little doubt" that Houben's typing is the result of bogus facilitated communication.[10]

Additionally, Arthur Caplan, a bioethics professor at the University of Pennsylvania, has claimed that the statements Houben allegedly made through his facilitator seem unnatural for someone disabled and unable to speak for decades.[12][17] Through Wouters, Houben is quoted as saying "Now I can communicate and talk via facilitated communication. Not everyone believes in this form of communication. It is a controversial method but, for me, it is vital to life. At last, my views can be heard and my feelings expressed."[18]

Initially, Laureys said that he had verified that the facilitated communication was genuine, by showing Houben objects when the facilitator was not present in the room, and later asking Houben to recall those objects.[18] Novella suggested that Laureys had not used proper controls.[10]

In an interview with the Belgian newspaper De Standaard, Laureys stated that he was not involved in the choice of communication method and refused to comment on its validity. He even claimed to be "a skeptic [himself]" and acknowledged that "the bad reputation of some forms [of facilitated communication] is justified". He also claimed that Houben's case was only made public because Der Spiegel wanted to report on his study and was looking for a "human element" to the story: "I knew that Rom and his family were willing to collaborate because they had done so before [for a Flemish TV channel]." However, he also criticized some of the negative feedback for "judging the evidence only on the basis of some video footage" and declared that "given time, we will look scientifically into the different ways of communication. For us, this seems to be the proper way."[19]

Disproof

Laureys later concluded that messages attributed to Houben through Wouters' facilitation were not, in fact, coming from Houben after all. After the early tests, further testing met with resistance. Using a different facilitator, subsequent testing under properly controlled conditions in which fifteen objects which were shown to Houben over a period of weeks was performed, Houben was unable to communicate knowledge of any of the objects which had been shown to him during the facilitator's absence.[3][20] Novella attributed Laureys' prior error to likely insufficient experience with facilitated communication.[3]

See also

References
  1. "Paralysed Belgian misdiagnosed as in coma for 23 years". BBC News. 24 November 2009. Retrieved 24 November 2009.
  2. Raf Casert (23 November 2009). "Rom Houben, man in coma for 23 years, was fully conscious, mom says". The Huffington Post.
  3. Scott Hensley (17 February 2010). "Book-writing man in coma fails communication test". National Public Radio. Retrieved 19 February 2010. But further tests show the man, Rom Houben, was unable to correctly identify simple words and objects presented to him by researchers, his neurologist Steven Laureys tells NPR's Jon Hamilton.
  4. Kate Connolly (23 November 2009). "Car crash victim trapped in 'coma' for 23 years was conscious". guardian.co.uk.
  5. Mark Memmott (23 November 2009). "For 23 years man thought to be in coma tried to 'scream', and no one heard". National Public Radio.
  6. Video showing facilitated communication with Rom Houben (video). MSNBC. Event occurs at 0:12. Archived from the original on 26 November 2009.
  7. Arthur Caplan (24 November 2009). Coherent after coma? Not so sure. NBC News. Retrieved on 29 November 2009.
  8. Jacob M. Appel (24 November 2009). The Rom Houben Tragedy and the Case for Active Euthanasia. The Huffington Post. Retrieved on 29 November 2009.
  9. James Randi (25 November 2009). "This cruel farce has to stop!". James Randi Educational Foundation.
  10. Steven Novella (25 November 2009). Man in Coma 23 Years – Is He Really Conscious?. Retrieved on 29 November 2009.
  11. Caroline Schnakers, Audrey Vanhaudenhuyse, Joseph Giacino, Manfredi Ventura, Melanie Boly, Steve Majerus, Gustave Moonen, Steven Laureys (2009). "Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment". BMC Neurology. 9: 35. doi:10.1186/1471-2377-9-35. PMC 2718857. PMID 19622138.CS1 maint: multiple names: authors list (link)
  12. Brandon Keim (24 November 2009). "Reborn coma man's words may be bogus". Wired Science. Retrieved 26 February 2010.
  13. han (21 November 2009). "Komapatient war 23 Jahre bei Bewusstsein". Spiegel Online (in German).
  14. Manfred Dworschak (23 November 2009). "„Meine zweite Geburt"". Der Spiegel 48/2009, pp. 134-137.
  15. PZ Myers (24 November 2009). "Really? This guy is conscious? Archived 27 November 2009 at the Wayback Machine
  16. "Belgian coma man was awake for 23 years". ninemsn. 24 November 2009.
  17. Associated Press (24 November 2009). "Man says emergence from 'coma' like rebirth". Retrieved 24 November 2009.
  18. David Charter (25 November 2009). "Mystery as coma survivor Rom Houben finds voice at his fingertips". Times Online.
  19. Filip Salmon (28 November 2009). "Rom is geen circusnummer (Rom is no circus act)". De Standaard. (in Dutch)
  20. Manfred Dworschak (13 February 2010). "Communicating with those trapped within their brains". Der Spiegel.

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