NRL News
Page 15
November/December 2009
Volume 36
Issue 11-12

Misdiagnosed for 23 Years, Rom Houben Is a Moral Lesson for Our Time
By Dave Andrusko

“The case of Terri Schiavo--who died five years ago next March, deprived for nearly two weeks of food and water, even the balm of ice chips--continues to prick consciences,” writes bioethicist Wesley Smith. “That may be one reason the case of Rom Houben, a Belgian man who was misdiagnosed for 23 years as being in a persistent vegetative state, is now receiving international attention.”

All those many, many years Rom Houben, the victim of an automobile accident, had been variously misdiagnosed as being either in a coma, comatose, or in a “persistent vegetative state” (PVS). The common denominator was that physicians had decided he was not conscious.

But Rom was, all along. As Smith pointed out, “He was fully awake and aware but unable to communicate, in a condition known as the ‘locked-in’ state.”

However, thanks to the dogged determination of his family, Rom, a former martial arts enthusiast and engineering student, now communicates using a computer with the aid of speech therapists and physical therapists.

“I was only my consciousness and nothing else,” he told his doctors. “I’ll never forget the day they discovered me. It was my second birth.”

Like Terri, Rom would have been a prime candidate for a hideous death by starvation and dehydration, had it not been for his kin. His mother, Fina Nicolaes-Houben; his late father; and his sister, Terein, never bought into any of the diagnoses.

To jump ahead his doctor, Steven Laureys, eventually concluded (as mentioned previously) that Rom suffered from so-called “locked-in syndrome,” described as “a rare neurological disorder in which nearly all the body’s voluntary muscles are paralysed, but the patient remains conscious and able to think and reason.”

But before this diagnosis was made, determined not to give up on Rom, the family “started a desperate odyssey around Belgium, France, and America on a quest for a new chance, an inkling of better news, a hint of medical breakthrough or discovery of some unknown expertise that might defeat the resignation and the fatalism,” the Guardian reported.

Many years and many trips later—including five trips at their own expense to the Glenn Doman Institute in Philadelphia, “a global pioneer in the treatment and diagnosis of brain-damaged children”—Fina and Terein attended a conference on locked-in syndrome. “The women met specialists from Ghent and Louvain who recommended Dr Steven Laureys of Liege University, a renowned neurologist,” the Guardian reported.

Not only was Laureys well respected, he had become convinced that many patients supposedly in what Europeans call a “neuro-vegetative” condition were not. Last July, he published a paper in BMC Neurology showing (as he told New Scientist) “that 41 per cent of vegetative patients may actually be minimally conscious, based on the Coma Recovery Scale–Revised.” (Minimally conscious can be described as being profoundly cognitively impaired but showing “subtle but consistent signs of awareness.”)

Rom is different, Laureys said, “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.”

Laureys determined Rom’s true condition, not by using fancy technology, but by employing the Coma Recovery Scale–Revised. This “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,” Laureys explained. He said Rom had a lot of different scans but just one—a PET scan—provided them with enough evidence to conclude that Rom was conscious.

TIME magazine did an online piece on the case (“Awaking from a Coma: What Did the Doctors Miss?”). It’s easy to see why there is so much misdiagnosis of brain-injured patients.

To begin with the brains of some PVS patients do heal. Most often lodged in long-term care facilities, patients with severe brain injuries do not have access to specialists; the staff can easily miss the nuances. Moreover, physicians may fail to distinguish between PVS and minimal consciousness.

In addition, according to TIME, “PVS and minimally conscious patients are at high risk of infection and can be heavily medicated, which may affect their responsiveness when tested by doctors.” Finally, “one of the main tools for assessing brain function in intensive-care settings—the Glasgow Coma Scale—does not perform well in chronic cases.” Laureys “wrote that PVS patients should be tested frequently using a standardized evaluation called the Coma Recovery Scale–Revised, which involves more thorough tests such as measuring patients’ eye-tracking abilities by moving a mirror slowly over their faces.”

Laureys made it clear that these diagnoses—which include “minimally conscious—are not “black and white.” But that’s precisely the point. “The figures [of misdiagnoses] are frightening but they are facts,” Laureys told TIME magazine.

The Calgary Herald, in ad editorial, may have put it best. “The lesson from Houben’s case--and reinforced, sadly, too late by Schiavo’s case--is that if doctors and courts must err, it should always be on the side of life, and on the assumption that despite all outward appearances, the ‘I’ is indeed there.”