By Dave Andrusko

Part Two brings you up to speed on the rationing implications of the Reid Health Care restructuring bill. Part Three offers you the chance to purchase copies of National Right to Life News' January 22 Commemorative Edition. Please send your comments on any part to daveandrusko@gmail.com. If you'd like, follow me on http://twitter.com/daveha.

"A lot of people seem emotionally invested in Rom Houben not actually being conscious. But all the evidence is on the other side. Now, his doctor Steven Laureys is interviewed in the New Scientist about his diagnosis. "
     -- From the blog of bioethicist Wesley Smith, http://www.firstthings.com/blogs/secondhandsmoke

Just a little over a week ago, I wrote about the fascinating case of a Belgian man, Rom Houben, who had been variously misdiagnosed for 23 years 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. (See www.nrlc.org/News_and_Views/Nov09/nv112309part2.html.)

Rom Houben

I was reminded that I needed to update the case when my youngest daughter told me over the weekend that she was finishing a paper on the subject of withdrawing food and fluids from (most commonly) severely brain-injured patients. Naturally, Louisa centered her paper on Terri Schindler-Schiavo.

Like Terri, Rom would have been a prime candidate for a hideous death by starvation and dehydration, had it not been for his parents and sister. 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."

What can we learn from Rom's case? First and foremost, that his mother, his late father, and his sister never bought into any of the diagnoses. (To jump ahead his doctor, Steven Laureys, eventually concluded that Rom suffered from a 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.")

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"--the mother, Fina Nicolaes, and older sister, 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.

Second, not only was Laureys well respected, he had become convinced that many patients supposedly in what Europeans call a "neuro-vegetative" condition were not. Earlier this year, 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."

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."

What gets lost in many of the accounts is that Laureys found out Rom's true condition not based on fancy technology. The Coma Recovery Scale – Revised "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 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 this week ("Awaking from a Coma: What Did the Doctors Miss?"), and it is clear why there is so much misdiagnosis of brain-injured patients.

To begin with the brains of some PVS patients do heal. And 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 (described as showing "subtle but consistent signs of awareness"). 

In addition, "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," according to TIME. "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.

Part Two
Part Three