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Haunted by Terri Schiavo
Wednesday, December 23, 2009, 3:23 PM
Wesley J. Smith

I will not let it go.  I have a piece on The Church Report about how the Rom Houben “awakening” brought Terri Schiavo powerfully back to minds and hearts.  I won’t belabor most of the points again here, since we have talked about it a lot.  But I will leave you with the conclusion.  From my column, “Haunted by Terri Schiavo:”

So Terri Schiavo remains very much with us. Polls show that most people believe that her dehydration was just and proper because she was so impaired.  But perhaps our inner voice, the part of us that never lies, sees it differently.  Perhaps the reason Terri Schiavo comes so quickly to mind whenever we hear stories about “miraculous” awakenings, is that we remain profoundly disturbed by what we did to her, haunted it would seem, by her beautifully smiling face.

I think that inner voice is one of the best things about being human.  May it never be put to sleep.


Ron Houben/Terri Schiavo: Art Caplan Misses My Point
Saturday, December 5, 2009, 11:57 PM
Wesley J. Smith

Bioethicist Art Caplan has weighed in against my Weekly Standard column.  But he misses, or at least, fails to address, the primary point of the column.  From his blog:

Wesley Smith has a new column out, in which he inappropriately uses the case in Belgium of Rom Houben to argue that somehow Terri Schiavo should not have been permitted to have her feeding tube removed. Smith argues that a case of locked-in syndrome is somehow analogous to the chance of recovery for someone in a PVS state post anoxia. I would like to have him find three neurologists who agree with that claim.

I certainly do think Terri should not have had her feeding tube removed, but not because of the Houben case.  (I have a whole series of columns I wrote about the many reasons for this view, and why I think it was a profound injustice. They are available at my articles archive for those interested.) Rather, I am of this opinion because she was a living human being who died only because she was deprived of all nourishment, based primarily on what I consider to have been an invidious judgmentalism, pushed by a husband, who by the time he decided he wanted her to die, was living with another woman (now his wife), who he then called his fiance, with whom he was already having children.  And that wasn’t the only apparent conflict of interest. Indeed, the guardian ad litem in the case recommended against dehydration due, in part, to a large financial conflict of interest, after which he was booted off the case based on a supposed bias against Michael Schiavo’s attorney. No other ad  litem was ever appointed for her in the case in chief–and that was far from the only irregularity in the case.

Nor did I analogize Houben’s locked in state to Schiavo’s either PVS or minimally conscious state.  They are not the same neurologically. But the point wasn’t neurological. Both people were fully equal to each other, Art, me, and indeed, each of us.

But now that Art brings it up, consider: Terri was dehydrated to death nearly 5 years ago.  Five years ago, everyone except his family, thought Houben was PVS.  Thus, at the time, he would have been considered just like Terri. Even if one thinks that PVS patients should be dehydrated–and I certainly don’t–about 40% of these patients aren’t really PVS.  When we countenance dehydrating them, we are almost surely ending the lives of some people who are actually conscious, perhaps even a few like Houben, who are fully awake but locked in. This almost happened, for example, to Kate Adamson, who went without most fluids for days after an intestinal blockage, and called it more agonizing than when she had surgery with inadequate anesthesia because the doctors thought she was unconscious.

Art knows that conscious people are withdrawn from sustenance, but it doesn’t matter:

As a final point, it is important to point out that not only was Terri Schiavo in a PVS state with 100% certainty, but her husband could have directed her care to be stopped in the State of Florida even if she had been in a minimally conscious state or, for that matter, a 23 year locked-in state. No one is bound to accept medical care if it violates their religious or personal views about what they want from medical interventions. The fact that Wesley is arguing that Houben proves there was hope for Terri Schiavo neglects the core issue of the case–can a spouse direct care be stopped on the grounds that it’s provision violates the wishes and values of the patient.

Actually, I think in Florida (at least at that time), the patient had to be PVS to have food and fluids removed when there was no advanced directive.  But even so, what Art states is correct generally. That is why I have argued food and fluids should be considered in a medical category all its own. Remove antibiotics, even kidney dialysis, and the results are not 100% certain. Remove food and water from anyone, and they will die in about two weeks.

But again, even that wasn’t the point of the column.  I wrote the column in the way I did because I noticed so many in the media made a beeline to the Schiavo case as soon as the Houben news broke. There’s a reason for that.  What we did to her still cuts deep.


Rom Houben: “The Long Awakening” and Continued Angst About Terri Schiavo
Saturday, December 5, 2009, 1:47 AM
Wesley J. Smith

I have an article in the current Weekly Standard on the Rom  Houben case. I find it fascinating that Terri Schiavo–and what happened to her–is the subtext of the entire event. From my article:

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. 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.

When Houben was injured and misdiagnosed, the idea of dehydrating him was unthinkable.  No more:

During the years that Houben was thought unconscious, society changed. Bioethicists nudged medicine away from the Hippocratic model and toward “quality of life” judgmentalism. Today, when a patient is diagnosed as persistently unconscious or minimally aware, doctors, social workers, and bioethicists often recommend that life-sustaining treatment–including sustenance delivered through a tube–be withdrawn, sometimes days or weeks after the injury.

I discuss the notorious Haleigh Poutre case, (about which I wrote more extensively here),  the little girl who would have been dehydrated but for the time it took to get the Massachusetts Supreme Court’s approval, allowing her the time to wake up. I discuss the controversy over whether he is not actually communicating.  And I point out something that I think is just beneath the surface of the entire discussion:

In any case, why the sour response to a good news story? It is hard to shake the feeling that the emotional crosscurrents stirred by Terri Schiavo have been stirred again. Time reported that Schiavo-type “legal fights are likely to become more common as classifications of brain-injury severity are revised.” According to ABC, Schiavo’s family “felt both heartbreak and vindication” about the story.

And so, it seems, Terri Schiavo remains very much with us. Indeed, every time we hear about the newest “miraculous” awakening, we find ourselves wrestling again with the moral import of all that happened; haunted it seems, by her beautifully smiling face.


Rom Houben Case: Doctor Explains How He Knows Patient is Conscious
Saturday, November 28, 2009, 2:19 PM
Wesley J. Smith

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 interview:

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.

The controversy over facilitated communication is a misdirection. The fact is that Houben was badly misdiagnosed as being unconscious when he is actually awake and aware. But he is not alone. Many studies have shown that PVS has about a 40% misdiagnosis rate.

Still, conscious or unconscious, we should not dehdyrate people to death based on a discriminatory quality of life judgmentalism. Unless the patient made it very clear, and in writing, that they want to be denied all sustenance if they become profoundly cognitively disabled, the benefit of every doubt should go to life.

I’ll have a longer piece published about this matter soon.


Houben Case: Resisting Rehumanizing Cognitively Disabled Patients
Wednesday, November 25, 2009, 12:29 PM
Wesley J. Smith

I believe reasonable skepticism is warranted any time a major “medical miracle” story breaks.  But there comes a time when skepticism becomes something else, an ideological tool to keep society from drawing ethical conclusions that the skeptic might oppose.

I think we have reached that point in the Rom Houben case.  Houben is the awake and aware man who made world headlines when it was proved that he was misdiagnosed as unconscious for 23 years.  A certain skeptical meme quickly ssued forth claiming that the whole thing is merely a “facilitated communication” scam, in which the real communicator is the therapist, not the patient.  The Huffington Post’s resident utilitarian bioethicist, Jacob–Let’s Farm Fetuses!–Appel, who worries that the Houben good news might prevent similar patients from being dehydrated or euthanized, also contends that Houben can’t really be communicating, and suggests a test to smoke out the chicanery. From his column:

…I confess that I am still highly suspicious of the details of this alleged medical miracle–and particularly of the messages that Houben purportedly types with the help of his aide…Houben’s cognitive abilities can be tested in numerous ways–such as reading him a sentence when his helper is out of earshot, and then asking him to retype it–so eventually we may learn whether his story is authentic, a matter of wishful thinking, or even a cruel and manipulative hoax. Until that time, the media and the public should retain a healthy skepticism.

Oops, apparently they’ve already done just that.  From a story in the AP:

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.

The Hougens case unquestionably gets in the way of the utilitarian agenda to rid us of burdensome cognitively and neurologically disabled people and/or to gain a license to use them as natural resources in organ harvesting or experimentation. But Houben rehumanizes a subset of patients–the unconscious and those apparently so–who have been denigrated and marginalized for many years by the dehydration crowd.  I think his story just might cause enough pause to keep us from writing these people off, and in the process, save some lives.


Rom Houben Case: Even After 23 Years, Family Never Gave Up Belief He Wasn’t “Vegetative”
Tuesday, November 24, 2009, 9:25 PM
Wesley J. Smith

More details are coming out about the Rom Houben case.  This struck me hard.  From the story:

Belgian doctors who treated him early on said that Rom had gone from a coma into a vegetative condition. Coma is a state of unconsciousness in which the eyes are closed and the patient can’t be roused, as if simply asleep. A vegetative state is a condition in which the eyes are open and can move, and the patient has periods of sleep and periods of wakefulness, but remains unconscious and unaware of him or herself or others. The patient can’t think, reason, respond, do anything on purpose, chew or swallow.

But Rom’s parents would not accept that he was comatose or vegetative.

His mother, Fina Houben, said in a telephone interview that they took him five times to the United States for tests. More searching finally got her in touch with Laureys, who put Houben through a PET scan that indicated he was conscious. The family and doctors then began trying to establish communication. A breakthrough came when he was able to indicate yes or no by slightly moving his foot to push a computer device placed there by Laureys’ team. Then came the spelling of words using his finger and a touch-screen attached to his wheelchair.

Gee, it’s a good thing they didn’t have an utterly intransigent judge saying “NO!” to every request for a PET scan and standing directly in the way of their never giving up hope.


Reason Not to Dehydrate: Man Speaking After 23 Years in Locked-In State
Monday, November 23, 2009, 10:57 AM
Wesley J. Smith

We hear constantly that people diagnosed as being persistently unconscious should be dehydrated to death because they are not “persons,” or are actually “dead”–and so should be available for organ harvesting.  We hear that even if the family resists, futile care theory should permit bioethics committees to impose unilateral withdrawal.  And we hear this even as repeated studies demonstrate that 40 or more percent of patients diagnosed as PVS really aren’t.

But the dehydrating lobby merely reply, “That’s even more reason to do it! Imagine the suffering!” Well, imagine you are in the locked in state (awake and aware but unable to communicate) and hear doctors telling your family to kill you.  Now that is terror.

But there are abundant reasons to treat people with profound cognitive disabilities as fully human beings.  First and foremost, because they are us. Second, because we don’t know enough about how the brain works to know that there won’t be some regeneration to permit eventual restoration of some function.  But also, because there is always hope.

Case in point: We hear from time-to-time, for example, that a person in PVS awakened.  And now in Belgium [NOTE, this corrects original post that incorrectly stated this happened in the UK], a  man misdiagnosed as unconscious for 23 years is now telling how he was fully aware all along.  From the story:

A car crash victim has spoken of the horror he endured for 23 years after he was misdiagnosed as being in a coma when he was conscious the whole time. Rom Houben, trapped in his paralysed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them – but could make no sound. ‘I screamed, but there was nothing to hear,’ said Mr Houben, now 46, who doctors thought was in a persistent vegatative state. ‘I dreamed myself away,’ he added, tapping his tale out with the aid of a computer.

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.

Houben is here today only because he wasn’t dehydrated to death.  There is no doubt he went through a horrendous experience, but thanks to treating him as a fully equal human being by caring for him all those years and giving him tests late into his disability–explicitly refused to Terri Schiavo–he is here today to tell tale and live the rest of his life.

And for goodness sake, whatever you believe about these issues, don’t talk in the presence of PVS or other apparently unconscious patients as if they aren’t there. Rather, always treat such people as if they can hear you, because sometimes they can.


Sexism in Baby Death Decision Case–or Cynical Use of Traditionalism?
Monday, November 9, 2009, 5:39 PM
Wesley J. Smith

This is rich: A pediatrician for a hospital wanting to cut off the life support of a baby because he is seriously disabled–although cognitively fine, as discussed here before–says that the hospitals like to follow what mothers want in cases such as this.  From the story:

The parents of the chronically disabled one-year-old, who can only be identified as RB, are locked in a court battle over whether he should be allowed to die. Prof Bush, a world-renowned expert in paediatric care, said both parents were ‘genuine, loving and caring’ and that he respected both their opinions. But he told the court: ‘As a paediatrician I think the views of the mother are something that should always be taken very, very seriously. ‘That’s not to trivialise the views of the father but I think most paediatricians would find it very difficult to overrule the views of the mother, unless there was clear evidence that the mother was unreasonable.’

That seems awfully convenient to me.  How many times have we been told over the last twenty years that there is no difference between the sexes ?  That point aside, I wonder whether–if the mother wanted the baby’s care continued and the father didn’t–we would be hearing that the mother just can’t face the facts because she is so invested in her baby.  We’ve certainly seen doctors and ethicists say that in other cases.  Indeed, futile care cases in Texas, Michigan (Baby Terry) and Washington (Baby Ryan) saw doctors/ethicists testifying to just that point.

Surely, cases such as this, where it is clearly no slam-dunk and one parent wants the child to live, that is where any benefit of the doubt should be honored.  What matters most is the baby’s interests and welfare, and I don’t think we are yet to the point that ethicists will say unequivocally that it is in the baby’s best interest to die when it he or she is cognitively normal and enjoys music, etc.

With this case, the dehydration/ventilator cases are moving from the cognitivey disabled being deemed lives too burdensom to live, to the physical.  It is a very scary time to be a disabled person who is expensive for which to care.


Bobby Schindler Wants to “Kill” the PVS Diagnosis
Monday, October 26, 2009, 1:33 PM
Wesley J. Smith

Nobody knows the pain of the culture of death more profoundly that the Schindler family.  First, Terri Schiavo–Bobby’s sister–was dehydrated to death because of her profound cognitive incapacity. Her cruel death, the family believes, badly undermined dad Robert Schindler’s health.  He died earlier this year.

The family, through the Terri Schindler Schiavo Foundation, has used their horror and pain productively as “celebrity victims” (Ralph Nader’s evocative term for people who become famous after suffering an egregious wrong), to advocate on behalf of human exceptionalism by standing firm against the quality of life ethic and on behalf of the equal moral worth of people like Terri.

Toward that end, Bobby has a column out today that gives examples of the unreliability of the persistent vegetative state diagnosis.  He also vividly reminds us of the consequences to the most vulnerable of writing them out of the human condition.  From his commentary:

To be clear: there is no indignity more final and brutal than forcing a living person to die the death of dehydration and starvation. Try to imagine the torture my sister endured in the last two weeks of her life. Being unable to defend herself, very likely aware of precisely what was happening and having absolutely no ability to escape it. For nearly two weeks, Terri was denied food and fluids. Not so much as an ice chip was given to her. It was pitiful, it was barbaric and it was clear that she was made to suffer. When my sister expired, she was a shell of her former self.

It is because of the suffering my sister and others endured that I believe the PVS diagnosis must be either reevaluated or completely abolished. With so many medical and neurological professionals admitting that there are inaccuracies and with the diagnosis being a death sentence, it is time to rethink disability and the way we regard it and our fellow human beings.

Bobby concludes:

In the United States alone, more than 50,000 people live with profound neurological or cognitive disabilities. They live, quite literally, at the pleasure and by the mercy of others. There is the very real possibility that a large number of those individuals have been misdiagnosed yet, they are living in the crosshairs. Wouldn’t reasonableness and a simple sense of humanity dictate that we stop forcing people to die miserable deaths, based on a diagnosis with such a tremendous margin of error?

If some people had their way, most or all of those 50,000 people would be dehydrated to death after (or perhaps, one day, lethally injected, which Jack Kevorkian advocates) a brief waiting period from injury.  That would be a profound moral wrong.  Bobby’s continuing call to conscience is a great service to his sister’s memory.


Study Shows That PVS Patients May Learn!
Monday, September 21, 2009, 11:24 AM
Wesley J. Smith

One of the greatest injustices of the Terri Schiavo case was the adamant refusal of Judge Greer to permit a renowned University of Chicago rehabilitation expert work with Terri to help her relearn how to swallow.  (Michael Schiavo had protected his future inheritance by denying her any and all rehab since 1992, even though he had told the malpractice jury in 1991 that he would use the damage award for that very purpose.)  This took place during the time of appeal, meaning it was known that the denouement was at least a year away. It would not have hurt her in the least.  If it didn’t work, that would then be known.  Ah, but if it did work, the dehydration would not have been able to go forward.

Apologists for this injustice said it couldn’t possibly work anyway because she was unconscious.  But now, a study published in Nature Neuroscience has shown that some people diagnosed with PVS may be able to learn.  From the abstract:

Pavlovian trace conditioning depends on the temporal gap between the conditioned and unconditioned stimuli. It requires, in mammals, functional medial temporal lobe structures and, in humans, explicit knowledge of the temporal contingency. It is therefore considered to be a plausible objective test to assess awareness without relying on explicit reports. We found that individuals with disorders of consciousness (DOCs), despite being unable to report awareness explicitly, were able to learn this procedure. Learning was specific and showed an anticipatory electromyographic response to the aversive conditioning stimulus, which was substantially stronger than to the control stimulus and was augmented as the aversive stimulus approached. The amount of learning correlated with the degree of cortical atrophy and was a good indicator of recovery. None of these effects were observed in control subjects under the effect of anesthesia (propofol). Our results suggest that individuals with DOCs might have partially preserved conscious processing, which cannot be mediated by explicit reports and is not detected by behavioral assessment.

Note that patients with greater brain atrophy apparently showed less capacity.  Still, such tests could protect the lives of some patients who are now branded as hopeless cases and removed from tube-supplied nutrition and hydration.

I hold strongly to the minority view, PVS, ShmeVS: A human being is a human being, is a human being, and should not be dehydrated to death.  But what about those who think awareness matters in moral value?  Will this possibility change things?  I doubt it. In the age of Obamacare, with its impetus toward cost control and health care rationing, when added with the growth in utilitarian medicine and “quality of life” judgmentalism, the costly and resource intensive efforts helping such patients would require would probably not be deemed “worth the cost.”

Still, we now have two strong indicators that PVS patients might have awareness, this, and the brain imaging studies showing that some  such patients may actually be interactive.  I know, I know: The biothicists (and liberal media types) will just say that awareness means the capacity to suffer, and hence, the dehydration (and eventually, the lethal jab) may be more important than ever. Heads the bioethicists win, tails people with profound cognitive impairments lose.

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