Art Caplan "Debunks" 23-year Misdiagnosis of PVS in Belgium, But Omits Some Details

Over the past week, there has been a lot of news coverage regarding the case of Rom Houben, a man in Belgium who was labeled as being in a persistent vegetative state.  He was severely injured in an auto accident in 1983, and since shortly after that has been regarded as being in a persistent vegetative state.

Twenty-three years later, things looked very different.  Houben's family believed he still had consciousness.  He was fortunate enough to come to the attention of Dr. Steven Laureys, with Belgium's Coma Science Group.  They tested Houben with new brain scanning equipment and found that his level of brain activity was identical to that of a person who had no brain damage.  Professionals on the team have worked with Houben to develop a way to communicate.

This has become a somewhat sensationalized and "inspirational" story.  And it's already receiving blowback.

The most prominent of the critics to surface is bioethicist Art Caplan, who says he isn't buying it.  He has three major concerns that I can identify.  Two of them lose a lot of substance when additional information is taken into account - information that Caplan doesn't provide.  All three - and my responses - are below:

1. Use of facilitated communication as a way to communicate.
(Full disclosure: As is noted in my bio, I used to work at the Facilitated Communication Institute at Syracuse University.  I have friends and colleagues associated with the technique, including people who at one time used facilitated communication (FC) as a means to communicate, but type independently now.)

From Caplan's article:

Most troubling about the claim that Houben is communicating are the facts that he is doing so with the help of a therapist who points his finger to the keys on a computer keyboard.

The therapist, Linda Wouters, has told news reporters that she can feel Houben guiding her hand with gentle pressure from his fingers. She feels him objecting when she moves his hand toward an incorrect letter. But, given his injuries, Houben should not be able to generate any pressure in his fingers. And if he can do so, why did no one else detect this ability over the past 23 years?

 First of all, even though Caplan says he read a lot about this case, he has missed the fact that we're talking about 26 years, not 23.

That's important to this particular issue and in an upcoming one as well.

Maybe Caplan didn't read the AP article he's quoted in, or he might have noticed that Houben has used another way to communicate in the past:

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."

 Got that?  He initially used an independent yes/no response with a foot device.

As to the reliability of the communication in this instance?  They tested:

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.

One caveat here.  It's a very loose description of the "message-passing" exercise.  Ideally, in a situation like this, the most convincing accurate result occurs when neither the facilitator nor the testers in the room know what the object, word, message, etc. to be passed was.

2. Locked-In Syndrome is usually a result of stroke.

From Caplan:

The major cause of this horrible condition is a stroke in a key artery in the brain that causes severe damage to the lower brain and brain stem but not the cortex, where thought and consciousness reside.  It is not clear how a car accident may have caused a locked-in situation.

Well, it's not clear to me how that could happen, either.  But the fact is that we have a group of highly-regarded neurologists who are saying that is exactly what has happened here.  They might not have a clue either.  It could be something that happens very rarely, and hasn't been detected until now simply because - since it's not something that people associate with a trauma event - it isn't explored as a possibility.  Heck, it even gets overlooked in stroke patients.

3. He's in unbelievably good mental shape for someone left in virtual isolation until recently.

I'm paraphrasing here, but Caplan's writings imply that Houben has only been interacting with people for a short time and that it's remarkable that he's so fluent and lucid.

Here's what Caplan actually says - read to see what the wording implies about how recently Houben has been interacting with those around him:

To add to my skepticism, Houben reportedly has been lying in a bed with relatively little stimulation and communication from others for 23 years. This is worse than being in solitary confinement for a very long time.

 The phrase "has been lying in bed" implies that Houben has been shut off from communication until very recently.

As noted earlier, Laureys and his team have been working with Houben for three years.

I'd love to know more - I'd imagine it was quite possible his thinking and communication was more disjointed three years ago than it is now.  Three years gives you a pretty good amount of time to get your cognitive processes reorganized and used to communicating again.

I agree with Caplan - I have a hard time wrapping my head around the concept of how one could live that way for so long and keep any type of sanity.  I hope I never get a chance to find out.

But I do know of at least one other person who has done that.  She lived that way for six years, only about a quarter of the time that Houben had to endure with his ability to think unrecognized.  That's exactly the experience reported by Julia Tavalaro, who went on to write a book about the experience titled "Look Up For Yes."

As for me, I have lots of thoughts and questions.

I'd love to know if they're trying to develop a more independent communication method for Houben, such as with an eye-pointing system.  I'd love to know, for his own welfare, if they're using his independent yes/no periodically to ask him to verify the accuracy of his communication through FC.

How many people like Houben are there out there?  Are there better and more reliable ways that we can judge people's state of consciousness?  Do we have to modify what we think we "know" about the recovery process from brain injuries?

I think there are a lot of questions that this episode provokes.  But you need more information than Caplan provides to get an idea of what kind of questions might be appropriate here.  --Stephen Drake

New Hampshire: House Judiciary Committee Votes Against Assisted Suicide Bill

Some good news from New Hampshire:

A bill to legalize assisted suicide in New Hampshire lost key backing yesterday from a legislative committee when both supporters and opponents joined forces to reject it.

The House Judiciary Committee voted 14-3 against the bill that would let terminally ill patients over age 18 obtain lethal prescriptions, with safeguards to prevent abuses.

Supporters of assisted suicide said the bill was flawed and teamed up with opponents to vote against recommending the measure to the full House. The committee has been working on the bill since September.

The House votes on the recommendation in January. If the chamber accepts the committee recommendation, legislative rules make it nearly impossible for the issue to be brought up again next year. 

Good news, but there is reason to remain vigilant.  Allies in the state tell us that it's highly unusual for the full legislature to approve a measure defeated in committee, but it is possible. Assisted Suicide activists could make a push for a full vote - or they might decide this could be a year in which most legislatures have enough on their plates without pushing the envelope on the "right to be killed."

Our local NDY organizers Tom Cagle and Bunny McLeod will continue to make sure that the disability rights perspective opposing legalized assisted suicide continues to be heard.  --Stephen Drake

Disability Activists "Greet" Euthanasia Activist in San Francisco

This just in from Marilyn Golden, Policy Analyst at Disability Rights Education and Defense Fund (DREDF):

(The date for the events below was November 10, 2009)

On Tuesday morning, three anti-assisted suicide advocates from the San Francisco Bay Area disability community, Paul Longmore, Walter Park, and myself came to the San Francisco Buddhist Center (which had been rented for the occasion but was not connected to the event itself) in order to leaflet outside an event by Dr. Philip Nitschke (the "Australia Kevorkian," as some have termed him). Paul had come early, done a wonderful job speaking with the media, and had to leave. Walter and I continue to relaxedly leaflet newcomers outside the building and calmly discuss with those who were interested, our deep concerns with Nitschke and Exit International. (Several of them commented that these discussions were interesting and enlightening.) When it came time to go in to hear the program, Walter and I were actually refused entry to this presumably public event (we were actually physically resisted and barred from entering) and termed a "security threat" by Nitschke's partner, Fiona Stewart (Ph.D.), who become much more agitated and upset than we had been at any point. This highly bizarre experience was another object lesson in how threatening to them the truth can be.

The leaflet text is pasted in below.

Marilyn

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We are disability rights advocates.

Dr. Philip Nitschke and Exit International endanger vulnerable people who are already unconscionably neglected and at risk.

Nitschke advocates death on demand for ANYONE of ANY AGE for ANY REASON. This irresponsible position threatens lonely people, depressed people, older people, and people with disabilities.

Nitschke believes that anyone, including teenagers, should be able to get suicide drugs on demand. He thinks lethal drugs should be available to “anyone who wants it, including the depressed, the elderly bereaved, [and] the troubled teen … .” [Kathryn Lopez, "Euthanasia Sets Sail," National Review Online, June 5, 2001.]

Nitschke calls for suicide on demand at a time when drastic budget cuts in many states are slashing funding for crisis counseling and suicide intervention programs.

Nitschke favors facilitating suicide by older people at a time when elder abuse is rampant in the US. The perpetrators are often family members.[1] Given the prevalence of abuse of older people by their own relatives, many can easily be pressured into "choosing" to die.

Nitschke supports suicide by people with disabilities at a time when in California tens of thousands of individuals are being cut off from the In-Home Support Services that keep them out of nursing homes. Some say they would rather die than go into a nursing home.

Nitschke supports suicide even by physically healthy people. Many of his victims were physically healthy at the time of their induced deaths. None of his seven "patients" had severe pain. Palliative care expert Prof. David Kissane concluded that some just needed better medical and psychiatric care. Kissane warned: "It is evident that the regulations did not serve as an effective safeguard to protect the vulnerable."

Even people who do not oppose voluntary euthanasia have had second thoughts about legalizing assisted suicide because of Nitschke's reckless behavior. Andrew Bolt wrote in the Herald Sun, Northwest Territory, Australia:

Giving the likes of Philip Nitschke licence to kill could create all sorts of horror for the lonely, scared, helpless and impressionable. … Few people could have been more in favour of euthanasia than was I.… In fact, what most influenced me far more has been -- ironically – Philip Nitschke, founder of Exit International. It's Australia's most famous lobbyist for euthanasia who has best shown me how dangerous it can be and what evil might be unleashed in legalising it. I saw how he started by helping people to die who were not in pain or dying. I saw him move on to helping people to die who were not even sick. Here we see the slippery slide that is inevitable when you remove the taboo against murder and suicide. What then stops anyone from killing themselves? Or, soon, from killing others?

Philip Nitschke's advocacy of suicide on demand is extremist paternalistic medicine at its most irresponsible and lethal.

We demand an equitable and just health care system that guarantees people's right to appropriate and adequate health care, including suicide intervention.

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[1] The National Elder Abuse Incidence Study (NEAIS) was conducted by the National Center on Elder Abuse at the American Public Human Services Association. It showed that, in 1996, 450,000 elders age 60 and over were abused, according to a study of observed cases. In almost 90 percent of the elder abuse and neglect incidents with a known perpetrator, the perpetrator was a family member, and two-thirds of the perpetrators were adult children or spouses. [National Center on Elder Abuse: “National Elder Abuse Incidence Study,” Washington: American Public Human Services Association, 1998.]

Below is a link to video coverage of the event that includes an interview with Paul Longmore: