Bioethicists attempting to define people in supposed PVS as “brain dead” and source of organs
Many people will have read the story of Rom Houben, the Belgium man who was diagnosed as being in a permanent vegetative 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 given that many bioethicists are attempting to 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 dehydration 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 analyzing 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, medical experts know less about PVS than they would like to admit.
At the same Congress I heard a presentation by an Italian physician who operated an “Awakening Centre.” Awakening centers 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 centers 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 people who are in a 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 Hippocratic 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.
[24November2009, Alex Schadenberg, Chairman, Euthanasia Prevention Coalition, www.LifeSiteNews.com]
Comatose for 23 Years, Belgian Feels Reborn Helped by a therapist, Rom Houben’s outstretched finger tapped with surprising speed on a computer touchscreen, spelling out how he felt “alone, lonely, frustrated” in the 23 years he was trapped inside a paralyzed body.
After a doctor found he was wrongly diagnosed as being in a vegetative state, and worked out a way for him to communicate, Houben said he now feels reborn.
“And just like with a baby, it happens with a lot of stumbling,” the 46-year-old Belgian wrote, tapping out the words in Dutch for Associated Press Television News on Tuesday as an aide guided his hand.
A leading bioethicist, however, expressed skepticism that Houben was really communicating, saying the responses seem unnatural for someone with such a profound injury and an inability to communicate for decades. The medical team guiding Houben said it had done special tests to verify it was Houben communicating.
Injured in a car crash in 1983 when he was 20, Houbon was diagnosed as being in a vegetative state, though doctors now believe he was conscious the whole time.
An expert using a specialized type of brain scan that was not available in the 1980s says he finally realized Houben was suffering from a form of “locked-in syndrome,” in which people are unable to speak or move but can think and reason, and provided him with the equipment to communicate.
Now, assisted by a speech therapist who moved his finger letter-by-letter along a touch-screen keyboard, Houben says years of being unable to move or express himself left him feeling “alone, lonely, frustrated, but also blessed with my family.”
“It was especially frustrating when my family needed me,” wrote Houben, who says he heard his father died during that time, but was unable to show any emotion. “I could not share in their sorrow. We could not give each other support.”
“Just imagine. You hear, see, feel and think but no one can see that. You undergo things. You cannot participate in life,” he wrote.
The therapist, Linda Wouters, told APTN that she can feel Houben guiding her hand with gentle pressure from his fingers, and that she feels him objecting when she moves his hand toward an incorrect letter.
Despite the occasional typo, the responses seemed fluid and conversational Tuesday. Suffering from a cold, he opened the interview by typing out, with the help of his therapist: “You catch me at a bad moment, I have looked better.”
Dr. Steven Laureys of Belgium’s Coma Science Group, whose testing uncovered Houben’s misdiagnosis three years ago, says he has discovered some degree of consciousness using state-of-the-art equipment like PET scans on other patients and looks at about 50 cases from around the world a year.
But none are as extreme as that of Houben, who was fully conscious inside a paralyzed body. Many center on the fine distinction between a vegetative state and minimal consciousness.
Arthur Caplan, a bioethics professor at the University of Pennsylvania who has had no direct contact with Houben or personal knowledge of the case, said he is skeptical of Houben’s ability to communicate after seeing video of his hand being moved along the keyboard.
“That’s called ‘facilitated communication,'” Caplan said. “That is Ouija board stuff. It’s been discredited time and time again. When people look at it, it’s usually the person doing the pointing who’s doing the messages, not the person they claim they are helping.”
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.
Houben’s mother said her son has become so proficient at punching sentences that he has even started writing a book. He has also written an article titled “Hidden wealth … the force of silence” for the in-house magazine at the ‘t Weyerke institute in eastern Belgian where he is being treated.
Asked Tuesday how he felt when his consciousness was discovered, Houben tapped out rapidly with the help of his aide: “I especially felt relief. Finally…able to show that I was indeed there.”
Laureys said he is now re-examining dozens of other cases. In a recent study, 40 percent of the patients diagnosed as being in a vegetative state were in fact minimally conscious.
American experts acknowledged a vegetative state diagnosis can often be wrong. But in most cases, they said, it involves a patient who is minimally conscious, whose muted and intermittent signs of awareness might be overlooked, rather than a patient like Houben, who is fully conscious but paralyzed.
Experts blamed the difficulty of diagnosis, insufficient training of doctors and a lack of follow-up to look for subtle signs that a once-vegetative patient has actually improved.
“Many people recover over time,” said Dr. Joseph J. Fins of the Weill Cornell Medical College. “It’s very easy for the label that is affixed at one point to sort of become eternalized, and so no one questions the diagnosis.”
[Associated Press Medical Writer Marilynn Marchione and Science Writer Malcolm Ritter contributed to this report. Writer Raf Casert, Associated Press, 25Nov 09, BRUSSELS,
Dr. Steven Laureys: How I Know ‘Coma Man’ is Conscious “Powerlessness. Utter powerlessness. At first I was angry, then I learned to live with it.”
These are reportedly the words of Belgian man Rom Houben, believed for over 20 years to be in a vegetative state. Houben drew the attention of the global media this week when it emerged that he may have been conscious the whole time. Videos appeared of him typing his thoughts into a touch screen; he was even reported to be writing a book about his experiences.
Then doubts surfaced as to whether Houben really was typing, because his finger is guided by an aide. Steven Laureys of University of Liège in Belgium, who first diagnosed Houben as being conscious in 2006, told New Scientist how he knows he was right – and showed his anger at the speculation over the typing.
From the online videos, it looks as if when Rom Houben types, his eyes are closed, he types surprisingly quickly and that his hand is guided by an aide. Can we be sure the words attributed to him are really his?
What is happening now is very regrettable. I feel sorry for Rom and about what some people have written on the net. He knows what people are saying, and one can only try to imagine what he has already been through. He has gone from being ignored for many years and considered vegetative to being recognised as conscious. And now he is again being treated as if “it is impossible, he cannot be a cognitive being”. Should I respond to that? I don’t want to.
I accept some people may have been insensitive, but could it be possible that he isn’t really communicating through the finger-guided touch screen?
I am a scientist, I am a sceptic and I will not accept any communication device if it is not properly tested. But I am not the one who made him communicate with the touch screen, I was just there to help him get rid of the diagnosis of vegetative state. And I don’t think one can say, based on videos on the internet, something meaningful about the use of the touch screen.
Did you ever communicate with him in any other way?
He has undergone a very extensive medical and neurological assessment – but as his physician I cannot tell you more. I am in a difficult position: do you want me to put his medical record on the internet, or show the videos we made for his assessment? I don’t think you would like it if I put results of your IQ test on the internet.
Can you say what makes you so sure he is conscious?
When I first saw Rom three years ago, he had been diagnosed as being in a vegetative state. We used the Coma Recovery Scale – Revised (PDF), which is a bedside behavioural assessment done in a very standardised way, and which you do repeatedly so as not to miss any signs of consciousness. And he showed minimal signs of consciousness. So we didn’t even need fancy scanning methods to change the diagnosis. Then he had a brain scan – and we saw near-normal brain function.
What kind of a brain scan did you do?
He had many scans – but I don’t want to go into this. We can limit ourselves to one brain scan, a PET scan, which is very straightforward. It measures the brain energy used by injecting radioactively labelled glucose.
How did this indicate he was conscious – I thought we didn’t yet have a signature of consciousness?
You are right, we don’t have the neural correlate of consciousness. However, there is a whole literature on the brain’s metabolic activity in the vegetative state and on its activity when it is functioning normally.
We wrote a paper on this in Lancet Neurology in 2004, in which we reviewed how PET scanning has shown high metabolic levels in the brains of patients in a locked-in syndrome compared with those in a vegetative state. However, what is still a major challenge is to disentangle vegetative from a minimally conscious state and other disorders of consciousness. This is not as black and white.
Can you elaborate?
In July we published our paper in BMC Neurology showing that 41 per cent of vegetative patients may actually be minimally conscious, based on the Coma Recovery Scale – Revised.
Rom is different to this because he has more than minimal brain function – his brain scans show that he has near normal function. But he has still put a human face to the very important problem of assessing consciousness, the importance of using a standardised scale and the power of neuro-imaging.
Are you following up with these people too?
Yes, we are following up with all the patients. So far we have only shown they are in a minimally conscious state, whereas Rom has a higher level of consciousness.
[27 November 2009, Celeste Biever,
More Insight: Patient Trapped in a 23-Year ‘Coma’ was Conscious All The Time
A car crash victim diagnosed as being in a coma for the past 23 years has been conscious the whole time.
Rom Houben was paralysed but had no way of letting doctors know that he could hear every word they were saying.
‘I dreamed myself away,’ said Mr Houben, now 46, who doctors thought was in a persistent vegatative state.
He added: ‘I screamed, but there was nothing to hear.’
Rom Houben was trapped in a coma for 23 years and had no way of letting anyone know he could hear what they were saying.
Doctors used a range of coma tests before reluctantly concluding that his consciousness was ‘extinct’.
But three years ago, new hi-tech scans showed his brain was still functioning almost completely normally.
Mr Houben described the moment as ‘my second birth’. Therapy has since allowed him to tap out messages on a computer screen.
Mr Houben said: ‘All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt.’
His case has only just been revealed in a scientific paper released by the man who ‘saved’ him, top neurological expert Dr Steven Laureys.
‘Medical advances caught up with him,’ said Dr Laureys, who believes there may be many similar cases of false comas around the world.
The disclosure will also renew the right-to-die debate over whether people in comas are truly unconscious.
Mr Houben, a former martial arts enthusiast, was paralysed in 1983.
Doctors in Zolder, Belgium, used the internationally accepted Glasgow Coma Scale to assess his eye, verbal and motor responses. But each time he was graded incorrectly.
Only a re-evaluation of his case at the University of Liege discovered that he had lost control of his body but was still fully aware of what was happening.
He is never likely to leave hospital, but as well as his computer he now has a special device above his bed which lets him read books while lying down.
Mr Houben said: ‘I shall never forget the day when they discovered what was truly wrong with me – it was my second birth.
‘I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead.’
Dr Laureys’s new study claims that patients classed as in a vegetative state are often misdiagnosed.
‘Anyone who bears the stamp of “unconscious” just one time hardly ever gets rid of it again,’ he said.
The doctor, who leads the Coma Science Group and Department of Neurology at Liege University Hospital, found Mr Houben’s brain was still working by using state-of-the-art imaging.
He plans to use the case to highlight what he considers may be similar examples around the world.
Dr Laureys said: ‘In Germany alone each year some 100,000 people suffer from severe traumatic brain injury.
‘About 20,000 are followed by a coma of three weeks or longer. Some of them die, others regain health.
‘But an estimated 3,000 to 5,000 people a year remain trapped in an intermediate stage – they go on living without ever coming back again.’
Supporters of euthanasia and assisted suicide argue that people who have lain in persistent vegetative states for years should be given the opportunity to have crucial medical support withdrawn because of the ‘indignity’ of their condition.
But there have been several cases in which people judged to be in vegetative states or deep comas have recovered.
Twenty years ago, Carrie Coons, an 86-year-old from New York, regained consciousness after a year, took small amounts of food by mouth and engaged in conversation.
Only days before her recovery, a judge had granted her family’s request for the removal of the feeding tube which had been keeping her alive.
In the UK in 1993, doctors switched off the life support system keeping alive Tony Bland, a 22-year- old who had been in a coma for three years following the Hillsborough disaster.
Dr Laureys was not available for comment yesterday and it is not clear why he thought Mr Houben should have the hi-tech screening when so many years had passed.
[http://www.dailymail.co.uk/news/worldnews/article-1230092/Patient-trapped-23-year-coma-conscious-along.html#;http://www.dailymail.co.uk/news/worldnews/article-1230092/Patient-trapped-23-year-coma-conscious-along.html##ixzz0Xfoh1ECn; By Allan Hall, 23rd November 2009]