Houben Case: Resisting Rehumanizing Cognitively Disabled Patients

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.