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Rom Houben is a 46-year-old Belgian man presumed comatose and in a vegetative state for 23 years after a near-fatal automobile accident, but according to several of his caregivers, unknown to the outside world actually remained conscious and paralyzed during the entirety of his hospital stay.[1][2][3] Houben was diagnosed with locked-in syndrome by Belgian neurologist Dr 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.[10]

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

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.[10]

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."[8] 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 argues that there is "little doubt" that Houben's typing is the result of bogus facilitated communication.[9]

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.[17][12] 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]

However, Dr Laureys says that he has verified that the facilitated communication is genuine, by showing Houben objects when the facilitator was not present in the room, and later asking Houben to recall those objects.[18] Novella, however, argues that Dr. Laureys does not appear to have used proper controls.[9]

In an interview with the Belgian newspaper De Standaard[19], Laureys states that he was not involved in the choice of communication method and refuses to comment on its validity. He even claims to be "a skeptic myself" and acknowledges that "the bad reputation of some forms [of facilitated communication] is justified". He also claims 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 criticizes some of the negative feedback for "judging the evidence only on the basis of some video footage" and declares that "given time, we will look scientifically into the different ways of communication. For us, this seems to be the proper way."

References

  1. ^ Dailymail.co.uk
  2. ^ "Paralysed Belgian misdiagnosed as in coma for 23 years". BBC. 24 November 2009. http://news.bbc.co.uk/2/hi/europe/8375326.stm. Retrieved 24 November 2009.  
  3. ^ Huffingtonpost.com
  4. ^ a b Car crash victim trapped in 'coma' for 23 years was conscious by Kate Connolly, guardian.co.uk, Monday 23 November 2009 13.13 GMT
  5. ^ For 23 Years Man Thought To Be In Coma Tried To 'Scream', And No One Heard, by Mark Memmott, NPR, November 23, 2009
  6. ^ a b Video showing facilitated communication with Rom Houben See 0:12 to 0:35 of this video
  7. ^ a b Arthur Caplan (24 November 2009). Coherent after coma? Not so sure. msnbc.com. Retrieved on 29 November 2009.
  8. ^ a b This Cruel Farce Has to Stop! James Randi
  9. ^ a b c Steven Novella (25 November 2009). Man in Coma 23 Years – Is He Really Conscious?. Retrieved on 29 November 2009.
  10. ^ a b c Jacob M. Appel (24 November 2009). The Rom Houben Tragedy and the Case for Active Euthanasia. The Huffington Post. Retrieved on 29 November 2009.
  11. ^ a b 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. http://www.biomedcentral.com/1471-2377/9/35/.  
  12. ^ a b Reborn Coma Man’s Words May Be Bogus
  13. ^ han (21 November 2009). "Komapatient war 23 Jahre bei Bewusstsein" (in German). Spiegel Online. http://www.spiegel.de/wissenschaft/medizin/0,1518,662627,00.html.  
  14. ^ Manfred Dworschak: "„Meine zweite Geburt"" in: Der Spiegel 48/2009 (23.11.09), pp. 134-137
  15. ^ Really? This guy is conscious?
  16. ^ Belgian coma man was awake for 23 years
  17. ^ Associated Press (24 November 2009). "Man says emergence from ‘coma’ like rebirth". http://www.msnbc.msn.com/id/34109227/ns/health-more_health_news/?GT1=43001. Retrieved 24 November 2009.  
  18. ^ a b Mystery as coma survivor Rom Houben finds voice at his fingertips
  19. ^ De Standaard: 'Rom is geen circusnummer' (Rom is no circus act), Nov. 30, 2009 (in Dutch)
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