How the media frenzy around a Belgian man misdiagnosed as being in a vegetative state came to haunt the doctor who treated him.

By Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

An article in Newsweek by writer Ford Vox is about the experience by Dr. Stephen Laurey's, the prominent neurologist from Belgium, who diagnosed Rom Houben as being in Locked-in-Syndrome after being diagnosed as PVS for 23 years.

Link to my previous blog comment on this story: http://alexschadenberg.blogspot.com/2009/11/siginificance-of-case-of-man-who-for-23.html

The Newsweek story reports:

It was a fantastic story that ruled the headlines for a few days, but unfortunately, it was only partly true, and the resulting media circus distorted the work of Houben's doctor, Steven Laureys. In reality, Laureys didn't need advanced technology to diagnose Houben, who doesn't meet the definition of a locked-in patient. Laureys actually can't verify that the patient was fully conscious for all those 23 years. Nor did Laureys acquaint Houben with "facilitated communication," a controversial aided-speech method that has Houben reliant on the hand of a therapist to peck out letters on a keyboard. (This method has been debunked time and again, including in a famous series of child-abuse trials involving severely autistic children.) But as the story gained more and more media attention, the narrative changed, and Laureys's work was increasingly misinterpreted. The doctor now sees his name linked to facilitated communication and seems driven to defend the method, even though the case is more accurately seen as a vindication for a simple but elegant observational test that can be used to determine a patient's level of consciousness.

In other words, Laurey's research was falsely attacked as being connected to a questionable communications technique rather than examining his research for what it actually means. The article went on to state:

Laureys, who directs the Coma Science Group at the University of Liege, Belgium, is well regarded for his research on consciousness in brain-injury patients, especially for devising new ways to distinguish patients in a vegetative state from a minimally conscious one (the latter sees waxing and waning of awareness). It's an important distinction: minimally conscious patients have a better chance of recovery than vegetative ones. Laureys's research may give doctors better tools to diagnose these patients. His work using fMRIs and digitally processed EEGs to determine brain activity is world-reknown. This summer, his team published work illustrating how a paper-and-pencil observational test, the Coma Recovery Scale (CRS), first developed by neuropsychologist Joseph Giacino in 1991, is far superior to a subjective analysis—in other words, the collective opinion of entire teams of physicians and therapists, many of whom still misdiagnosed patients after weeks of treatment.

According to Laureys's research, the CRS, a standardized exam where responses to sensory stimuli are repeatedly tabulated, provides a more detailed picture than a routine bedside neurological examination, which might only involve a few minutes of reflex testing of unresponsive patients. It allows doctors to pick up on a variety of low-level patient behaviors that might not otherwise be noticed. In the published study, his team used the CRS to find that 18 of 44 of "vegetative" patients had been misdiagnosed.

The article then explains how the story of Rom Houben actually came to be:

After the study was published, Laureys got a call from Manfred Dworschak, a reporter interested in profiling the doctor and his work. He asked Laureys to help provide a human dimension for the article—a misdiagnosed patient who was willing to go public. Laureys recommended Rom Houben, a car-accident victim whose mother had pressed him for a consultation in 2006, convinced that her son had been misdiagnosed for two decades. Though Houben had not been one of the patients evaluated in the study, the technique was the same: Laureys used the CRS to determine that Houben was, in fact, conscious. Laureys thought Houben would also make a good source in part because he appeared to be able to describe the horror of his misdiagnosis, thanks to the facilitated-communication therapist hired by his family soon after Laureys's initial evaluation.

The article then explains how the Associated Press created a confusion surrounding the story. The article continues:

The German magazine Der Spiegel published the piece about Houben and Laureys online on Nov. 23, which Laureys hoped would call attention to the effectiveness of the underused CRS. (The English translation appeared online two days later.) But when U.S. outlets reported on Houben, key facts were bungled. For instance, The Associated Press mistakenly claimed that Laureys taught Houben how to communicate and later noted that Laureys used sophisticated brain-activity scans to diagnose Houben (he hadn't—though experimental scans were later made, the CRS was all it took for an accurate diagnosis). None of its coverage mentioned the Coma Recovery Scale. Even worse, the presence of the much-debated facilitated-communication technique took the story in a different direction.

Then bioethicist Art Caplan joined the game. His intention was to debunk Laureys criticism of misdiagnosis by attacking the communications method. The article states:

Art Caplan, a University of Pennsylvania bioethicist, knows stories like these can make families afraid to withdraw care and donate organs even when doctors reliably predict a poor outcome for a patient. The moment he saw tape of Houben's aide moving his fingers across a computer keyboard, he sensed trouble, Caplan says. "That's Ouija board stuff," he told the AP. There was a brief moment when the story first broke stateside during which CRS was discussed—Joe Giacino, the American neuropsychologist who developed the test, appeared on Campbell Brown's show on CNN and explained the benefits of the scale, which many centers still don't use. But only 48 hours later, Giacino was back on CNN arguing that the questions about facilitated communication that had become the media's focus were legitimate.

The article concludes by assuring us that in spite of the false furor, Laureys will be back with further research.

Unfortunately, the furor over this odd "therapy" has further confused what the public understands about coma recovery. In fact, facilitated communication is so rare that it's a nonissue for most brain-injury patients. Neither Laureys nor Giacino has ever seen another brain-injured patient use it. Nonetheless, Laureys is planning a thorough investigation and asks the public and the scientific community "to be patient" until he can get "facilitated communication through [a] peer-reviewed journal."

As Laureys heads back into his lab, leaving behind a mess he wants to clear up one day with published science, he admits to some naiveté and says he feels a little "paranoid." "Don't I regret, or should I have foreseen, that this would have happened? Well, I didn't," Laureys says with a sigh. "In retrospect, of course, it's always easy."

Link to the original article: http://www.newsweek.com/id/229784

The siginificance of the case of the man who for 23 years was diagnosed as PVS - but was not

Many people will have read the story of Rom Houben, the Belgium man who was diagnosed as being in a vegestative state (PVS) for 23 years but who in fact had a condition known as Locked-in Syndrome. A person in locked-in syndrome is fully aware of all of their surroundings and they hear and remember the conversations that take place around them, but due to their cognitive disability they are unable to respond.

The case of Rom Houben is significant knowing that many bioethicists are attempting redefine the status of people in PVS as being similar to "brain death", meaning that it is being argued that these people have lost self-awareness and therefore should be treated as non-persons or dead people. Non-persons do not have the right to live and in fact many bio-ethicists suggest that these people should be treated as organ donors.

Dr. Steven Laureys, the prominent neurologist from Belgium diagnosed Houben as being in a locked-in syndrome rather than PVS based on a brain scan that indicated that Houben's brain was functioning at near to normal response.

Dr. Laureys, has released a new study concerning PVS stating: 'Anyone who bears the stamp of "unconscious" just one time hardly ever gets rid of it again.' He also stated that: there may be many similar cases of false comas around the world.' and 'patients classed in a vegetative state are often misdiagnosed.'

The concern about misdiagnosing PVS is not new. Professor Keith Andrews in the UK stated several years ago in his study that 43% of people diagnosed as PVS are misdiagnosed. This is a significant concern in the UK ever since the 1993 court decision that determined that Tony Bland could be dehydrated to death, even though he was not otherwise dying. Since that decision, many people in the UK, who were not otherwise dying, have died by dehydation because it had been determined that they were in PVS.

For instance, Terri Schiavo was dehydrated to death in 2005 based on her diagnosis of PVS and the insistence by her husband that she did not want to live in this manner.

In March 2004, I had the opportunity to be at a presentation in Rome by Dr. Laureys concerning people in a vegetative state. At that presentation Dr. Laureys showed us brain scans of people in PVS and compared them to people who were healthy. By analysing the brain scans he was able to show us the injured parts of the brain of the PVS patients. He then compared the brain scans of people in PVS to healthy people who were sleeping. There were incredible similarities between the scans of the healthy people who were sleeping to the people who were PVS. He concluded that other than the identifiable injured areas of the brain, that medical experts know less about PVS than they would like to admit.

At the same Congress I heard a presentation by an Italien physician who operated an "Awakening Centre". Awakening centres are places that focus on recovery for people who are in a coma state. This physician explained how the use of stimulation techniques have resulted in incredible successes at regaining consciousness for their patients. At a similar Congress in Rome in 2007 I listened to a Polish physician explain about his incredible success at awakening his patients who are in a coma state. How many awakening centres exist in the world? How many in North America?

As executive director of the Euthanasia Prevention Coalition I have received many phone calls from friends or family members of people who are in coma. My experience is that medical professionals are too quick to give-up on the person in coma or cognitively disabled. Family members are often pressured into withdrawing medical treatment or pressured into removing food and fluids from the person in coma, even before they were given a reasonable opportunity for recovery.

Medical professionals need to be far more careful before diagnosing a patient as PVS. If society rejects hypocratic medicine and accepts euthanasia, the time would come where people in PVS would be treated as non-persons, euthanized out of a concept of false compassion or used as an organ donor based on utilitarian ethics. Since approximately 40% of PVS cases are misdiagnosed, and since the PVS diagnosis is often treated like a death sentence, therefore society needs to reject the current paradigm by once again treating people in coma states as human beings deserving of care.

We must reject the dehumanizing of the PVS patient and develop new techniques to offer them new opportunities for recovery.