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.
In 1983, Houben suffered catastrophic head injuries in an automobile accident. He arrived at the hospital unconscious. Doctors eventually concluded that his case was hopeless, and his family was told he would never waken. But the Houben family, like Terri’s parents and siblings, didn’t give up. They diligently sought out every medical advance. This wasn’t delusion or pure wishful thinking. Several studies have shown that about 40 percent of persistent vegetative state diagnoses are wrong.
Most of the mistakes involve patients who are in a “minimally conscious” state, in which the patient is responsive, but profoundly cognitively impaired. Not Houben. New scanning techniques find that he exhibits near normal brain activity, and events have shown that for more than two decades, he was fully awake and aware but unable to communicate, in a condition known as the “locked-in” state.
Houben’s misdiagnosis was almost surely not due to negligence. When he was injured, techniques for assessing the workings of the badly injured brain were less sophisticated. More important, back in the 1980s there was no question about whether a patient like Houben would receive life-sustaining care. Depriving catastrophically injured patients of food and water was not even considered—except among bioethicists, who were already quietly preparing the ground for the practice of withdrawing sustenance from such patients.
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and bioethicists often recommend that life-sustaining treatment—including sustenance delivered through a tube—be withdrawn, sometimes days or weeks after the injury.
To take one example, Haleigh Poutre suffered a terrible battering that left her unconscious when she was 11. Within days, doctors decided she would never recover and recommended that life-sustaining care be withdrawn. Because she was a ward of the state, the legal process took several months, culminating in a January 2006 Massachusetts Supreme Court ruling permitting withdrawal of treatment, including food and fluids.
Before the doctors could withdraw treatment, however, Poutre began to stir, and it soon became clear that she was awake. The withdrawal of care was called off, and today she is sufficiently recovered to take her own meals and receive special education.
In another case of misdiagnosis some dubbed Schiavo 2, the family of Jesse Ramirez fought with his wife to prevent his dehydration. Ramirez woke up in the nick of time and eventually walked out of the hospital. Then there was the English woman Kate Bainbridge, thought to be unconscious until scans showed she was fully awake and aware. As reported in 2007 by theTimes of London, Bainbridge is now home with her family and can use a lettering board to communicate.
Alas, these and similar cases too numerous to mention have not been sufficient to turn the tide against withholding sustenance from people with profound cognitive impairments. When families don’t object, both unconscious and minimally conscious patients now have sustenance withdrawn as a normal medical practice throughout the United States.
Some advocates want to go further than current law allows. Articles in prestigious medical and bioethics journals urge that death be redefined to include a diagnosis of persistent vegetative state to permit organ harvesting from these patients. A few articles have advocated using patients like Schiavo and Houben (before his misdiagnosis was discovered) in medical experimentation.
Another consequence of the new prevailing view is the controversy surrounding Houben’s improved condition. Houben started communicating in a rudimentary way by answering yes or no questions with the movement of a foot. Now, after three years of therapy, he communicates with the help of a speech therapist who moves his finger over a computer keyboard, allowing him to contract his finger to type each letter. Some critics grouse that this “facilitated communication” is a scam, in which the actual communicator is the therapist rather than the patient.
That seems unlikely. Houben is in the care of an internationally respected doctor, Steven Laureys of the University of Liège, not a person one would expect to participate in such a subterfuge. Laureys reacted angrily to the criticism in the New Scientist, telling an interviewer, “I am a scientist. I am a skeptic, and I will not accept any communication device if it is not properly tested.”
The Associated Press reported steps the doctor had taken to confirm the reliability of the facilitated communication:
One of the checks Laureys applied to verify Houben was really communicating was to send the speech therapist away before showing his patient different objects. When the aide came back and Houben was asked to say what he saw, that same hand held by the aide punched in the right information, he said.
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.
Predictably, activists on both sides have weighed in. Much-quoted bioethicist Art Caplan, who strongly backed Michael Schiavo quest to end his wife’s life, sniffed after viewing a video of Houben that it all looked like “Ouija Board stuff” to him. The Huffington Post‘s resident bioethicist, Jacob Appel, argued that people in Houben’s condition should be considered for euthanasia: “Rather than offering a compelling reason to keep such patients alive,” Appel wrote, “the horrors of enduring such a petrified existence may offer a compelling reason to let them die.”
The Calgary Herald, however, editorialized, “The lesson from Houben’s case—and reinforced, sadly, too late by Schiavo’s case—is that if doctors and courts must err, it should always be on the side of life, and on the assumption that despite all outward appearances, the ‘I’ is indeed there.”