Alex Schadenberg, Chairman, Euthanasia Prevention Coalition
Many people will have read the story of Rom Houben, the Belgium man who was diagnosed as being in a permanent vegetative state (PVS) for 23 years, but who in fact had a condition known as Locked-in Syndrome. A person in locked-in syndrome is fully aware of all of their surroundings and they hear and remember the conversations that take place around them, but due to their cognitive disability they are unable to respond.
The case of Rom Houben is significant given that many bioethicists are attempting to redefine the status of people in PVS as being similar to "brain death," meaning that it is being argued that these people have lost self-awareness and therefore should be treated as non-persons or dead people. Non-persons do not have the right to live and in fact many bio-ethicists suggest that these people should be treated as organ donors.
Dr. Steven Laureys, the prominent neurologist from Belgium diagnosed Houben as being in a locked-in syndrome rather than PVS based on a brain scan that indicated that Houben’s brain was functioning at near to normal response.
Dr. Laureys has released a new study concerning PVS stating: "Anyone who bears the stamp of ‘unconscious’ just one time hardly ever gets rid of it again." He also stated that: "There may be many similar cases of false comas around the world," and "patients classed in a vegetative state are often misdiagnosed."
The concern about misdiagnosing PVS is not new. Professor Keith Andrews in the UK stated several years ago in his study that 43% of people diagnosed as PVS are misdiagnosed. This is a significant concern in the UK ever since the 1993 court decision that determined that Tony Bland could be dehydrated to death, even though he was not otherwise dying. Since that decision, many people in the UK, who were not otherwise dying, have died by dehydration because it had been determined that they were in PVS.
For instance, Terri Schiavo was dehydrated to death in 2005 based on her diagnosis of PVS and the insistence by her husband that she did not want to live in this manner.
In March 2004, I had the opportunity to be at a presentation in Rome by Dr. Laureys concerning people in a vegetative state. At that presentation Dr. Laureys showed us brain scans of people in PVS and compared them to people who were healthy. By analyzing the brain scans he was able to show us the injured parts of the brain of the PVS patients. He then compared the brain scans of people in PVS to healthy people who were sleeping. There were incredible similarities between the scans of the healthy people who were sleeping to the people who were PVS. He concluded that other than the identifiable injured areas of the brain, medical experts know less about PVS than they would like to admit.
At the same Congress I heard a presentation by an Italian physician who operated an "Awakening Centre." Awakening centers are places that focus on recovery for people who are in a coma state. This physician explained how the use of stimulation techniques have resulted in incredible successes at regaining consciousness for their patients. At a similar Congress in Rome in 2007 I listened to a Polish physician explain about his incredible success at awakening his patients who are in a coma state. How many awakening centers exist in the world? How many in North America?
As executive director of the Euthanasia Prevention Coalition I have received many phone calls from friends or family members of people who are in coma. My experience is that medical professionals are too quick to give up on people who are in a coma or cognitively disabled. Family members are often pressured into withdrawing medical treatment or pressured into removing food and fluids from the person in coma, even before they were given a reasonable opportunity for recovery.
Medical professionals need to be far more careful before diagnosing a patient as PVS. If society rejects Hippocratic medicine and accepts euthanasia, the time would come where people in PVS would be treated as non-persons, euthanized out of a concept of false compassion or used as an organ donor based on utilitarian ethics. Since approximately 40% of PVS cases are misdiagnosed, and since the PVS diagnosis is often treated like a death sentence, therefore society needs to reject the current paradigm by once again treating people in coma states as human beings deserving of care.
We must reject the dehumanizing of the PVS patient and develop new techniques to offer them new opportunities for recovery.
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