The dehumanizing label “persistent vegetative state” (PVS) was crafted in 1972 just as the “right to die” movement took on steam. In the 1980s, bioethicists, courts, state legislatures, and physicians began to use PVS diagnoses to justify denying food and fluids to unresponsive patients.
Dr. Joseph Giacino, director of rehabilitation neuropsychology, Spaulding Rehabilitation Hospital, and Nicholas Schiff, a neurologist at Weill Cornell Medical Center, conducted experiments that prove this bleak diagnosis is often wrong. They discovered apparently “vegetative” people whose minds still imagine, recognize, and respond. The first “vegetative” patient Schiff saw was the victim of a stroke who had no sign of consciousness. Three years later, he met her again and was shocked to find her able to talk to him.1
According to the 1994 Multi-Society Task Force on the medical aspects of PVS (MSTF), a person in a coma is neither awake nor aware; a person in a vegetative state is awake but not aware. The MSTF defines PVS as a vegetative state that lasts more than one month.2 Individuals in PVS are seldom on any life-sustaining equipment other than a feeding tube. Some can swallow, others cannot. Some have been physically injured, others have had a stroke or have dementia. In simple terms, the diagnosis of PVS is based on lack of evidence of awareness of self and environment.
Misdiagnosis is Not Uncommon
In 2003, data gathered by the MSTF on a group of 434 patients in PVS showed that, by 12 months after injury, 52% had regained consciousness.3 A 2007 study showed around 40% of PVS patients were wrongly diagnosed.4 As early as 1996, London neurologist Dr. Keith Andrews reported that, out of 40 patients diagnosed as PVS, 17 (43%) were later found to be alert, aware, and often able to express a simple wish. Dr. Andrews said, “It is disturbing to think that some patients who were aware had for several years been treated as being vegetative.”5
Kate Adamson’s PVS diagnosis was rendered after a brain stem stroke. She was actually aware. Interviewed by Bill O’Reilly in 2003, she said, “When the feeding tube was turned off for eight days, I thought I was going insane. I was screaming out in my mind, ‘Don’t you know that I need to eat?’ It was sheer torture.”
Some patients who have a PVS diagnosis do exhibit evidence of awareness, but the diagnostician misses (or dismisses) it. They may be mute and immobile, but mentally alert and able to communicate by blinking or through aids such as computers—if someone gives them the opportunity. Other patients retain some measure of awareness even though they do not exhibit evidence of it. Those who have recovered recall things that were said or done to them while no one knew they were aware.
PVS patients (those not dehydrated to death) are often warehoused in nursing homes where they are deprived of rehabilitation and medical treatment.
The unconscious world is far more complex than most of us can imagine. Those who have severe brain damage may still enjoy touch, scent, taste, and sound; they may also feel loneliness, fear, and despair.
Their inability to satisfy our longing for response does not justify abandonment or imposed death.