Locked in without a key

Why are some bioethicists and scientists so sceptical of the incredible story of a paralysed Belgian man who began to communicate after 23 years?
Michael Cook | Dec 2 2009 | comment  



Rom Houben with his facilitator Linda Wouters"I screamed, but there was nothing to hear," was the terrifying headline in London's Daily Mail a few days ago. This was not an advertisement for another instalment of Nightmare on Elm Street, but a real-life medical story. A neurologist discovered that a man living in a Belgian nursing home in a persistent vegetative state (PVS) for 23 years had really been conscious. He could hear doctors talking, but was completely unable to respond. He had been buried alive.

Rom Houben, a martial artist and engineering student who could speak four languages, was paralyzed in a car accident when he was 23. Tests always confirmed that he was a PVS patient.

Somehow Steven Laureys, of the Coma Science Group at the University of Liege, Belgium, came into the picture. He gave Houben an MRI scan -- which was not available when his accident happened -- and found that his brain was only slightly damaged. Inside he was quite lucid. Although Houben is almost completely paralyzed, he can move his right hand and right toe slightly. This enables him to communicate. With the help of therapist Linda Wouters, he spells words out on an on-screen keyboard. He is even writing a book, says Laureys with some satisfaction.

For Dr Laureys this case confirms his theory that many PVS patients are wrongly diagnosed -- up to 43%, he says, in an open-access article in BMC-Neurology. Tragically, despite many examinations, the doctors did not detect that Rom Houben was actually conscious.

"Once someone is stamped as being 'not conscious,' it becomes very difficult to get rid of that label," says Laureys. Furthermore, proper testing takes many hours -- hours that medical personnel don't have, especially if a patient is in a nursing home or at home in the care of relatives.

Scrooges

This sounds like the good news story of the decade, but immediately there was a chorus of "bah, humbug!"

"How does anyone fall for this?" asked P.Z. Myers, a vehement sceptic who blogs at Pharyngula. Art Caplan, an often-quoted bioethicist from the University of Pennsylvania, felt that the facts just didn’t add up. "The technique of having someone point your finger to a keyboard is called facilitated communication. Sadly, it has been shown time and again to be unreliable. There is something of the ouiji board about the whole thing."

This scepticism raises two questions. First, does facilitate communication work? Second, should we want it to work?

Facilitated communication helps people who are unable to communicate with speech or signs because of due to autism, mental retardation, brain damage, or diseases like cerebral palsy. It began in Australia in the 1970s when Rosemary Crossley claimed that she had established communication with 12 children affected by cerebral palsy.

However, when it spread to the US in the 1990s, it came under closer scrutiny. Questions arose when some of these severely disabled people wanted more autonomy or accused carers of abuse. How could a court know whether the facilitator or the patient was talking? Controlled studies appeared to show that it was often the facilitator. A number of professional organisations ended up condemning facilitated communication as unethical, unscientific, and unwarranted.

But it has had successes. Rosemary Crossley’s most impressive student was a Melbourne woman with cerebral palsy, Anne McDonald (see her article in MercatorNet). She was regarded as severely mentally retarded for years, but went on to write a book about her experience, Annie’s Coming Out, and to get a university degree.

Dr Laureys is fully aware of the ouiji board trap and is sure that he has not been gulled by the facilitator. He asked Ms Wouters to leave the room, showed Houben some objects, and told him to write them down when she returned. He passed the test. An official case report will probably be published in a peer-reviewed journal which may satisfy the sceptics.

The second question -- Should we want it to work? -- is even more controversial. Hovering over the nursing home in Belgium is the ghost of Terri Schiavo, the severely brain-damaged woman at the centre of a right-to-die case in Florida. Eventually her husband withdrew her food and water and she starved to death in 2005.

There may be as many as 15,000 PVS patients in US nursing homes with lives like Rom Houben’s used to be. Their care costs a lot of money. In the eyes of the public, the most persuasive argument against treating all of them like Terri Schiavo is the possibility that they might turn out to be Rom Houben. Hang the expense, voters think; the risk of killing a single mentally active human being is too great.

(In fact, whether a patient is mentally active or not is irrelevant to their human dignity. As long as a person is alive, she deserves a minimum of humane care, including food and water.)

But for a utilitarian – and this includes most of the sceptics about Rom Houben – things look quite different. Their yardstick is the greatest good for the greatest number. Starving 15,000 Terri Schiavos is worth the risk of knocking off a few Rom Houbens.

In fact, euthanasia is morally obligatory in such cases, some utilitarians think. Julian Savulescu, an Australian who is now a professor of ethics at Oxford, and a colleague, Guy Kahane, argued this year in the Journal of Medicine and Philosophy. Even if there were doubts, their lousy quality of life as a locked-in patient means that there is little point in testing them:

"It is far from obvious that such lives are still worth living. If so, then even if using fMRI we can establish that brain-damaged patients still enjoy phenomenal consciousness and a significant measure of sapience, terminating these patients’ lives might be morally required, not merely permissible."

This is a radical idea. On the one hand, the money which could be saved is substantial: not just the care for the patients, but testing to see whether they are really conscious, and even research into whether recovery might be possible. On the other hand, Professor Savulescu might have killed someone like Helen Keller. 

It seems obvious that considerations like these are fuelling the scepticism: if Laureys is right about Rom Houben, perhaps we were wrong about Terri Schiavo.

Adequate testing

What conclusions does Laureys draw from his experiences with PVS patients?

Houben had bad doctors, Laureys admits, but testing patients thoroughly is a very difficult job. "Every patient," says Laureys, "should be tested at least 10 times before he is definitively classified as vegetative." There are many problems, apart from the workload. Many PVS patients drift in and out of consciousness and the tests might be administered when they are not "at home". They can be so drugged with sedatives that they become incapable of responding.

But the effort to administer exhaustive tests is worthwhile. Apart from the misery of abandonment and lack of recognition, they might be in physical pain. An exhaustive test devised by Laureys is required nowadays in government-run nursing homes in Belgium. While Savulescu believes that a locked-in life is so unimaginably horrible that it justifies euthanasia, Laureys’s experience is different. "Various studies suggest that despite their extreme motor impairment, a significant number of {locked-in syndrome] patients maintain a good [quality of life] that seems unrelated to their state of physical functioning," he wrote in another article.

Rom Houben seems convinced that doctors should keep pounding on the door to see if anyone is home. "Normally everything goes along like a snail," he says, "but now I feel like I am sitting in a Porsche — not comfortable but very happy."

Michael Cook is Editor of MercatorNet.



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