Rom Houben
Encyclopedia
Rom Houben is a 48-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, was conscious and paralyzed during the entirety of his hospital stay. In 2010, the claim was rejected when communication could not be repeated with a different facilitator and by hiding the object to be identified from the view of the facilitator.
by Belgian neurologist
Steven Laureys
in 2006 with the help of modern brain imaging techniques and equipment. He now apparently communicates by typing into a keyboard with his right hand supported by a communication facilitator
. However, the claims that Houben is able to communicate by typing have been widely disputed.
Houben's case is used to question the current methods of diagnosing vegetative state and to arguments against withholding care from such patients. However, some bioethicists believe that the case, if confirmed, may provide stronger arguments for withdrawing or withholding from vegetative patients.
While Houben was diagnosed in 2006, his case, first reported in a BMC Neurology paper in July 2009 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 which was subsequently picked up by media outlets around the world, receiving extensive coverage.
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
.
The method used to allegedly communicate with Houben is known as facilitated communication
, 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". 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.
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. 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."
Initially, Dr. 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.
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 myself" 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."
attributed Dr. Laureys's prior error to likely insufficient experience with facilitated communication.
Automobile
An automobile, autocar, motor car or car is a wheeled motor vehicle used for transporting passengers, which also carries its own engine or motor...
accident, but according to several of his caregivers, was conscious and paralyzed during the entirety of his hospital stay. In 2010, the claim was rejected when communication could not be repeated with a different facilitator and by hiding the object to be identified from the view of the facilitator.
Background
Houben was diagnosed with locked-in syndromeLocked-In syndrome
Locked-in syndrome is a condition in which a patient is aware and awake but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for the eyes. Total locked-in syndrome is a version of locked-in syndrome where the eyes are paralyzed as...
by Belgian neurologist
Neurologist
A neurologist is a physician who specializes in neurology, and is trained to investigate, or diagnose and treat neurological disorders.Neurology is the medical specialty related to the human nervous system. The nervous system encompasses the brain, spinal cord, and peripheral nerves. A specialist...
Steven Laureys
Steven Laureys
Steven Laureys is a Belgian neurologist.-Career:Laureys graduated as a Medical Doctor from the Vrije Universiteit Brussel, Belgium, in 1993. While specializing in neurology he entered a research career and obtained his M.Sc. in Pharmaceutical Medicine working on pain and stroke using in vivo...
in 2006 with the help of modern brain imaging techniques and equipment. He now apparently communicates by typing into a keyboard with his right hand supported by a communication facilitator
Facilitated communication
Facilitated communication is a process by which a facilitator supports the hand or arm of a communicatively impaired individual while using a keyboard or other devices with the aim of helping the individual to develop pointing skills and to communicate...
. However, the claims that Houben is able to communicate by typing have been widely disputed.
Houben's case is used to question the current methods of diagnosing vegetative state and to arguments against withholding care from such patients. However, some bioethicists believe that the case, if confirmed, may provide stronger arguments for withdrawing or withholding from vegetative patients.
While Houben was diagnosed in 2006, his case, first reported in a BMC Neurology paper in July 2009 without him being named, was only brought to wider public attention after German weekly magazine Der Spiegel
Der Spiegel
Der Spiegel is a German weekly news magazine published in Hamburg. It is one of Europe's largest publications of its kind, with a weekly circulation of more than one million.-Overview:...
ran a story on it in November 2009 which was subsequently picked up by media outlets around the world, receiving extensive coverage.
Controversy
Bioethicist Jacob M. AppelJacob M. Appel
Jacob M. Appel is an American author, bioethicist and social critic. He is best known for his short stories, his work as a playwright, and his writing in the fields of reproductive ethics, organ donation, neuroethics and euthanasia....
of New York University
New York University
New York University is a private, nonsectarian research university based in New York City. NYU's main campus is situated in the Greenwich Village section of Manhattan...
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
Right to die
The right to die is the ethical or institutional entitlement of the individual to commit suicide or to undergo voluntary euthanasia. Possession of this right is often understood to mean that a person with a terminal illness should be allowed to commit suicide or assisted suicide or to decline...
.
The method used to allegedly communicate with Houben is known as facilitated communication
Facilitated communication
Facilitated communication is a process by which a facilitator supports the hand or arm of a communicatively impaired individual while using a keyboard or other devices with the aim of helping the individual to develop pointing skills and to communicate...
, which the Association for Behavior Analysis International, the American Academy of Child and Adolescent Psychiatry
American Academy of Child and Adolescent Psychiatry
The American Academy of Child and Adolescent Psychiatry is a 501 non-profit professional association in the United States dedicated to facilitating psychiatric care for children and adolescents. Established in 1953, the Academy is headquartered in Washington, D.C...
and the American Association on Mental Retardation
American Association on Mental Retardation
The American Association on Intellectual and Developmental Disabilities is an American non-profit professional organization that advocates on behalf of those with mental retardation...
have called a "discredited technique", the use of which is "unwarranted and unethical". 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.
Additionally, Arthur Caplan
Arthur Caplan
Arthur L. Caplan, Ph.D., is Emmanuel and Robert Hart Professor of Bioethics and director of the Center for Bioethics at the University of Pennsylvania. Prior to coming to Penn in 1994, Caplan taught at the University of Minnesota, the University of Pittsburgh, and Columbia University. He was the...
, a bioethics professor at the University of Pennsylvania
University of Pennsylvania
The University of Pennsylvania is a private, Ivy League university located in Philadelphia, Pennsylvania, United States. Penn is the fourth-oldest institution of higher education in the United States,Penn is the fourth-oldest using the founding dates claimed by each institution...
, has claimed that the statements Houben allegedly made through his facilitator seem unnatural for someone disabled and unable to speak for decades. 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."
Initially, Dr. 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.
In an interview with the Belgian newspaper De Standaard
De Standaard
De Standaard is a Flemish daily newspaper published in Belgium by Corelio . Circulation was about 102.280 in 2007. It was traditionally a Christian-Democratic paper, associated with the Christian-Democratic and Flemish Party, and in opposition to the Socialist Flemish daily De Morgen...
, 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 myself" 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."
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. Dr. Steven NovellaSteven Novella
Steven P. Novella is an American clinical neurologist, assistant professor and Director of General Neurology at Yale University School of Medicine...
attributed Dr. Laureys's prior error to likely insufficient experience with facilitated communication.