Opponents of the right to die appeared to savor a public relations victory with the reported "rebirth" of car-crash victim Rom Houben, a forty-six year old Belgian man who is said to have spent twenty-three years trapped immobile in his own body. Dr. Steven Laureys, a leading neurologist and well-respected coma expert based in Liege, used brain imaging techniques not available at the time of Houben's accident to argue that his patient was "locked-in" and fully conscious, rather than relegated to a vegetative state. A speech therapist, Linda Wouters, now claims that she has helped a grateful Houben to communicate with the outside world using a touch-screen keyboard. If Houben's story does live up to the media hype -- and many authorities in the field are not yet convinced -- conservative activists may attempt to use his tragedy as an argument against withdrawing care from those believed to be persistently comatose. However, should Dr. Laureys prove correct in his belief that many other patients are similarly imprisoned, these calamities may instead offer a compelling argument for withdrawing such care. In fact, such circumstances might present the rare occasions when active euthanasia is morally justified without overt consent.
I should emphasize that I have no personal knowledge of Rom Houben's case beyond what has been revealed by the media. At the same time, 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. Wouton claims that she can feel gentle pressure in her patient's finger that help steer him toward keys. Yet if Houben is truly paralyzed, the neurological mechanism that allows for these signs is unclear. American bioethicist Arthur Caplan, not persuaded by Dr. Laurey's claims after watching video of Wouton "assisting" Houben, suggested that the patient's "messages" were actually acts of facilitated communication in which the caregiver, rather than the patient, was choosing the letters. Caplan described facilitated communication as "Ouija board stuff" that has "been discredited time and time again." James Randi has gone even further, describing these writings as "a farce" and "a lie." Of course, that does not mean that Houben is not "locked-in" yet sentient, as Laurey's brain scans may show. 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.
For momentary argument's sake, let us give Houben's tale of "rebirth" the benefit of the doubt. Does this mean that patients in vegetative states should be kept alive at all costs in the belief that some of them may be merely locked-in? Not necessarily. If one believes that the preservation of life is the paramount value in all circumstances, then human beings should never be allowed to die prematurely -- even if the alternative is torture. On the other hand, if one believes that the prevention of suffering may sometimes justify the withdrawal or withholding of care, then the very fact that Houben was conscious for twenty-three years might call more convincingly for such action. Houben's own words are haunting: "I would scream, but no sound would come out....I became the witness to my own suffering, as doctors and nurses tried to speak to me and eventually gave up." That sounds strikingly like a form of torture. Keep in mind that patients like this have no guarantee that their consciousness will ever be discovered. And even if it is, they will be locked forever in the shackles of their own bodies. So rather than offering a compelling reason to keep such patients alive, the horrors of enduring such a petrified existence may offer a compelling reason to let them die.
The distinguished neuroethicists Guy Kahane and Julian Savulescu make such a case in their paradigm-shifting article, "Brain Damage and the Moral Significance of Consciousness," in this February's Journal of Medicine and Philosophy. Their reasoning turns traditional progressive thinking in such tragedies on its head. During the court battles over the fates of Terri Schiavo and Eluana Englaro, liberals argued that these women should be permitted to die, in part, because they were no longer sentient. Yet if they were no longer capable of thought -- dead in all but name -- at least they were not suffering. In contrast, if they were indeed conscious, then the horror of being prisoners in their own bodies might offer a far stronger argument for allowing their suffering to end. Most people would prefer not to live if their quality of life dropped below a certain level. Short of being boiled alive in hot oil daily, finding oneself completely locked-in is about as low a quality of life as one can achieve while conscious.
That is not so say that some partially locked-in patients, like Jean-Dominique Bauby, who blinked The Diving Bell and the Butterfly with his left eyelid, don't achieve meaning in their frozen condition. But many more probably suffer like Johnny Bohnam, the senseless, limbless soldier who begs for death by pounding Morse code with his head in Dalton Trumbo's indelible Johnny Got His Gun. I can say with confidence and considerable reflection that I personally would not want to live twenty-three locked-in years, even knowing that "rebirth" loomed in the future. I regard such a fate as medically-induced torture. I'd hope that my friends and family would press a pillow over my face until my breathing stopped -- and I believe that, in honoring this previously and frequently expressed wish, they would be acting fully within the bounds of medical ethics and decency and love.
When a "locked-in" individual can express a preference for life or death, respect for autonomy strongly suggests that such a wish be honored. No conscious individual should ever be euthanized against his wishes merely because he is not socially productive, or because his care is costly, or because a panel of bioethicists believes that his life is not worth living. The problem is that few individuals ever express their wishes regarding this disturbing set of particular circumstances -- one way or another -- before they find themselves in a locked-in state. That omission leads to a deeply unsettling question: In cases where no prior preference has been expressed, should the default rule be the preservation of life or should the default be freedom from suffering? One solution might be to survey the population and to establish the majority preference as the default. Another might leave the decision in the hands of family members. Or we could even conclude that some forms of suffering are so horrific that a few patients may have to die against their preferences so that others will not have to undergo years of unremitting psychological agony.
What is clear is that, if there are truly more locked-in patients than once believed, our society must confront these unpleasant choices directly. While we might ultimately decide to let these patients live, even at the risk of allowing them to suffer, we should recognize that such a policy is neither obvious nor intuitive. Whatever the truth of Rom Houben's case, it does not offer any easy answer to these questions.