Christian campaigners' evaporating evidence - news you won't hear on CNN

You might recall the case of the Belgian patient who after 23 years in a locked-in kind of state, and who had been reportedly misdiagnosed as being in persistent vegetative state (PVS), suddenly began 'communicating'. In case you don't remember, here's my report (and take) on the case. The odds are that the patient in question has indeed been misdiagnosed for years as being in PVS. The thing is also, unfortunately, that the case was quickly hijacked by Christian campaigners to further their own ideological agenda. Understandably, every misdiagnosed patient is a cause of concern in the context of ongoing arguments about the question of whether or not it is acceptable to dehydrate PVS patients and let them die. A true PVS patient would not suffer due to his/her brain condition. A patient in a locked-in state would note that this is happening and might well suffer. The Christian campaigners are presumably aware of the fact that public opinion ain't on their side with regard to true PVS patients. One reason for this is that a PVS patient can't truly benefit in any meaningful way from his/her continued existence.

My own view on the issue is that the lack of benefit to the patient in its own right would not be a good reason to discontinue his/her existence, especially if - as is the case in PVS patients - there is no pain or suffering involved in their continued existence. While there are people about who care about such patients' ongoing existence and who would find the patients' discontinuation distressing, we have a good reason to keep them alive. The only counter argument I can see on this front is that resource allocation concerns might tilt the scales toward discontinuation.

In any case, back to the Belgian man. Imagine the excitement of our Christian campaigners when the Belgian doctor of the patient demonstrated that the locked-in man was even able to 'talk' to us. He 'talked' to us by means of a helper who assisted him typing his words (aka answers to the questions asked by the attending physicians) onto a touchscreen computer. I was skeptical in my original blog entry that this widely discredited method of communication was to be trusted this time around. I mean, how likely is it that a guy who hadn't moved for more than two decades would suddenly engage in (albeit assisted) small-talk. Well, it turns out that I was right. An investigation of the matter by the German weekly newsmagazine DER SPIEGEL confirmed that it wasn't the patient who said anything but his assistant (thanks to Art Caplan for bringing this to my attention!). So, now we know what his assistant thought the patient would have answered if he hadn't actually been unable to answer. Here's what the magazine reports:

'The staff at Houben's care center first tried an on-screen keyboard that he could operate using his right index finger, which is not fully paralyzed. For a while, it seemed like a good idea and, after some practice, Houben was able to type rather quickly. He made many mistakes, but his messages were understandable. Still, using that method required the assistance of a speech therapist, who stood behind him to support his hand. At one point, Laureys, the neurologist, claimed that he had ruled out the possibility that it was actually the speech therapist doing the writing. But it turns out that his checks weren't quite thorough enough. Obtaining reliable results requires a rather protracted procedure. Patients with serious traumatic brain injuries are not always capable of following difficult instructions. They also sleep a great deal, and sometimes they sink into extended periods of delirium. In order to rule out false negative results, repeated tests need to be conducted over the course of several weeks.

Laureys has now carried out those tests, and his results hold that it wasn't Houben doing the writing after all. The tests determined that he doesn't have enough strength and muscle control in his right arm to operate the keyboard. In her effort to help the patient express himself, it would seem that the speech therapist had unwittingly assumed control. This kind of self-deception happens all the time when this method -- known as "facilitated communication" -- is used. (As a result, the things that Houben was attributed as saying to SPIEGEL for an article printed in November 2009 were also not authentic.) In the more recent test, Houben was shown or told a series of 15 objects and words, without a speech therapist being present. Afterward, he was supposed to type the correct word -- but he didn't succeed a single time.

This doesn't necessarily discredit facilitated communication altogether. Laureys analyzed another paralyzed test subject who answered all 15 control questions correctly despite having a comparable brain-damage diagnosis. "That means it is really necessary to verify every single case," Laureys says. Now the work with Houben will have to start all over again. But there is one thing for sure -- images taken of his brain activity reveal that it is behaving only slightly differently from that of a healthy brain. As a result, researchers are fairly certain that Houben is conscious -- and they find themselves in the desperate position of a rescue team trying to dig out a person from under the rubble.'

It is troublesome that no major news organisation has picked up on this revelation, so their flawed initial reporting about the ongoing communications from this patient remains uncorrected.

The Week

It's difficult for me to pick my 'favourite' news item this week to blog about. Two stand out, a study published in the New England Journal of Medicine, and the latest news from spokespeople of the cult of misery as my good friend Russell Blackford likes to call the Roman Catholic Church. The study in the NEJM was mistaken by large media organisations to further substantiate the claim that folks diagnosed to be in persistent vegetative state (PVS) or minimally conscious state (MCS) actually are not in such states, but rather that they're fully conscious persons trapped in a completely unresponsive body. Researchers in Belgium and France measured brain reactions in 54 such people in both countries and discovered to their surprise that some of them had the same brain regions light up that did light up in the healthy control group. This does indeed suggest that there's a possibility that in those folks a functional brain capable of understanding and responding to questions is kind of stuck in an unresponsive body. That is scientifically truly interesting and deserves further research. However, it's worth noting that despite the media hype (and hype by 'pro-life' activists) of the 54 PVS participants only a 5 responded in the manner I have just described, and 'in three of these patients, additional bedside testing revealed some sign of awareness, but in the other two patients, no voluntary behavior could be detected by means of clinical assessment.' The researchers sadly failed to ask how these 'responsive' people felt about being stuck in an unresponsive body, whether they wanted to continue living, questions that have been for a long time central in ethical and policy debates about the proper treatment of people in such states.

Stan Terman, MD, PhD of Caring Advocates commented (sensibly): "The finding that while bedside behavioral testing detected NO awareness (the hallmark needed for the diagnosis of Permanent Vegetative State), a high tech scan (fMRI) allowed one patient (out of 23) [not 4] to answer five simple Yes-or-No questions such as, “Is your brother’s name Alex?” Sensational news reports claimed that technology allowed this patient “to communicate for the first time since [the accident].” This may be an overstatement in terms of what we mean by “communication.” While the authors intend to ask patients about pain in the future, they did not suggest posing the ultimate existential Yes-or-No question, “Do you want to live in this state?” Surveys indicate that most people answer “No,” but there are still some who may this limited finding as a reason to never give up hope. Family members of patients with severe disorders of consciousness, especially if they are people of faith may use this finding to bolster their argument to continue to provide aggressive medical care and tube feeding when physicians consider such medical treatment to be futile. In addition, powerful faith-based health organizations, that determine their institutions’ policies regarding refusal of medically administrated food and water, may cite this result from one patient to continue tube feeding, indefinitely. Yet there is something I do not hear: So far, no professional has proposed, based on the finding that fMRI could help NONE of the patients whose PVS resulted from loss of oxygen (as opposed to physical trauma), it is therefore now both morally and ethically correct to withdraw feeding tubes from those PVS patients. I suppose the news media would prefer to report findings as providing hope—that’s what people want to hear. Unfortunately, bolstering false hope could lead to an inappropriate allocation of scarce medical resources." Stay tuned for more to come on this issue. I suspect the debate is far from over!

Well, then there are my friends from the Roman Catholic Church. Reeling from - by now - substantial numbers of (sexual) abuse cases involving children in their care across the globe, the organisation is being hit with the same scandal in Germany, where the number of abuse cases has reached more than one hundred (and counting). Of course, this ain't really newsworthy, we're used by now to the fact that some of its celibate staff are anything but celibate, particularly so when kids are about. Since 1995 about 100 of them were investigated in the context of child abuse allegations in Germany alone. Quite a number! As usual senior management tried as long as possible to protect its staff from prosecution - while busy preaching to the rest of society what proper sex and morals are all about. It is this bit that annoys me ever more. I do not understand why anyone in this day and age would even bother listening to representatives of this organisation the moment they say 'ethics' or 'morality'. Routinely historical truth is being mutilated in the name of the ideological cause, when bishops declared at one point or other that the holocaust is abused as a propaganda instrument by Jewish people, and, of course, that abortion is akin to genocide (tell that to the folks who were slaughtered in Rwanda, for instance). Incidentally, Christians fanatics from a southern state of the USA have been on the road again, in good colonial style, to grab kids in third world countries. It looks like in Haiti a whole bunch of them will be prosecuted for kidnapping kids (whose parents and/or relatives are alive and kicking). The official version is that they planned to hand them over to adoptive parents in the USA. It goes without saying that it all was a misunderstanding now. I pray to the non-existing Gods that they will be sentenced and put in Haitian jails and won't be simply extradited to the USA. There got to be some justice in this world every now and then.

Vatican governs Italy

Silvio Berlusconi, Italy's best-known playboy, has officially been appointed to be the Vatican's permanent representative in his own government. According to reports in THE GUARDIAN newspaper today, after frantic forth and backs with Vatican officials, he is aiming to change Italy's laws in order to prevent doctors from executing a Supreme Court of Italy approved case of removing life-sustaining medical care from a woman in persistent vegetative state. This saga reminds very much of the Bush meddling in the Schiavo case a few years back in the USA.

Here are the basics of the case: Eluana Englaro is a 38-year-old woman who has been in a coma for the past 17 years. She was left in a persistent vegetative state after a car accident. Her family wanted her life-preserving care removed from her, both because that is what Ms Englaro would have wished, and also because her brain injuries are such that there is no chance she will ever rejoin us in this life. She will not ever be able to live a life worth living again.

Eventually after a long long march thru the legal instances the Italian Supreme Court granted the family's request. Doctors have begun to reduce her nutrition since. Her PVS means that she won't feel any of this happening. The 'v' in PVS really means that her state of consciousness is vegetable like. Veggies don't feel pain or suffer.

Well Italy's first playboy, after consulting Italy's governor general, the Pope, declared that this court decision was akin to murder and issued an emergency decree aiming to prevent the withdrawal from life-sustaining medical care. One of his - on the record - rationales was that she is still physiologically capable of making babies...

Reports THE GUARDIAN: Giorgio Napolitano, Italy's president, has refused to sign the decree, but if it is ratified by the Italian parliament doctors may be obliged to resume the feeding of Eluana early this week. One can only hope that the Italian parliament will show more insight and realise that there is nothing to be gained by this patient remaining in PVS for another few decades. As the anaesthetist caring for her, Professor Antonio de Monte, said: "Eluana died 17 years ago."

UPDATE: Eluana has died yesterday peacefully.

On another note, commiserations to my Melbourne based compatriots. The scale of the catastrophe in Victoria truly boggles the mind! Just read that among the people who perished were Brian Naylor and his wife.