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Tative State Is a Life Sentence. Search on the Minimally Us May Help Commute It

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Tative State Is a Life Sentence. Search on the Minimally Us May Help Commute It mmm A Flicl<er of onscious• tative state is a life sentence. search on the minimally us may help commute it ON SUNDAY, AUG. 9, 2009, VALENTINE Filipov, a handsome and energetic manag- er at a refrigeration factory in Pazardzhik, Bulgaria, decided to change a burned-out lamp in his garden. His daughter Anna refers to what happened next as "my fa- ther's ridiculous accident," Filipov lost his balance on the 3-ft. (0.9 m) stepladder and fell, hitting his head on the pavement. The blow put him in a coma for five days. When he opened his eyes, doctors determined that the damage he sustained had left him in a vegetative state, a condition defined by unresponsive wakefulness, in which patients follow a normal sleep-wake cycle, breathe without assistance and make re- flexive movements such as swallowing, yawning, grunting and fidgeting but have Photographs by Peter van Agtmael for TIME ness Window into the soul Valentine Filipov's eyesfollow a mirror during a test doctors used to confirm he has retained some level of consciousness 43 SCIENCE I CONSCIOUSNESS no awareness of their environment and leave remarkable room for recovery. Pa- can't respond to commands. tients labeled vegetative typically stay After FiliI>OVspent a month in the hos- that way-but sometimes they don't. So pital, the doctors discharged him. They where's the line between resignation and told his family there was nothing more hope? Various studies in the past decade, they could do, that he would be in a veg- including one by Belgian and U.S.experts etative state for the rest of his life. in 2009, have found that about 40% of pa- But Filipov, who was then 45, seemed tients diagnosed as vegetative are actually less lost to the world than the doctors as- conscious and fall into a category adopted sumed. He would sometimes laugh with in 2002called minimally conscious, a state family members. He would sometimes cry in which some awareness exists and im- with them-especially with Sofiya, his provement is possible. wife of 23 years. Vegetative patients have In the Nov. 10issue of the medical jour- been known to cry, but their outbursts are nal the Lancet, a research team that includ- typically spontaneous and not associated ed Laureys illustrated this point starkly. with external stimuli. Filipov's seemed They studied 16 patients diagnosed as triggered by things going on around him. vegetative, hooking them up to an electro- Desperate for a reappraisal, his family encephalogram (EEG)and asking them to took him to see Dr. Steven Laureys, head of imagine squeezing their right hand and the Coma Science Group at the University wiggling their toes on command. Three of of Liege in Belgium, one of the few centers the subjects apparently imagined it well, in the world that study vegetative patients. with the proper EEG tracings appearing Laureys asked the Filipovs if they could in the premotor cortex of their brain. Did make Valentine cry. They circled his bed, they hear? Were they conscious? and Sofiya approached him. She bent over Those are terrifying questions. Patients him, cradling his cheeks in her hands. wrongly diagnosed as vegetative are sen- "Will you cry with me, my love?"she whis- tenced to a life of being tended to by care- pered. "Will you weep with me, my dear?" givers (who may never take the trouble His face began to contort. His eyes fixed on to engage them because it seems point- his wife's face. He started crying, loudly. less) even as a partly functioning mind weeps or dreams or rages within. "The no- The Consciousness Conundrum tion of a conscious person treated as not THERE'SANODDCIRCULARITYTOSTUDIES conscious-to me that's the ultimate por- of consciousness-a curious exercise in trait ofisolation," says Dr.Joseph Fins, chief the brain investigating the brain. Nobel of medical ethics at Weill Cornell Medical laureate Francis Crick took a reductionist College in New York City. "It's solitary con- view of things in the 1970s, coining the finement of the most troubling kind." The may leave other patients deaf or blind or term "the astonishing hypothesis": the idea Lancet study and others suggest that with so severely spastic, epileptic or paralyzed that all feelings, thoughts and actions are the right technologies and therapies, at that they cannot control their movements. just the products of a mass of brain tissue least some of these confined minds may They may be severely amnesiac and un- and that we all exist only one well-placed conceivably be set free. able to remember what is asked of them. head trauma away from the irrevocable They may suffer from akinetic mutism, erasure of the self. Most people choose to A Look in the Mirror in which the part of the brain responsible see things more lyrically; consciousness is EACHYEARIN THE U.s. AT LEAST14,000 for decisionmaking and drive is damaged. the ineffable ghost in the machine that dis- victims of brain damage are diagnosed as What's more, minimally conscious tinguishes us from plants and bacteria and vegetative. If the 40% misdiagnosis figure patients almost always suffer from fluctu- perhaps even other animals-the quality is correct, that means 5,600 of them are in ating vigilance; for them, consciousness that makes us wondrously special. But sci- better shape-perhaps far better-than flickers on and off like faulty Christmas- entists aren't lyricists, and Crick's mecha- their records show. tree lights. "A doctor goes to the bedside, nistic view has prevailed, with scientists There are a lot of reasons the error rate gives five commands, gets no response and treating the brain as merely another organ, is so high, not least that truly reliable pronounces the patient vegetative. But a albeit a highly complex one. tests for consciousness have not been de- different doctor might see the patient at a Nowhere is that complexity more veloped. To date, the only accepted diag- different time and come away with a total- evident than in our understanding of nostic method remains a bedside exam. ly different impression," says Joe Giacino, how consciousness works-and fails to Clinicians ask patients to respond to director of rehabilitation neuropsychol- work. Minor accidents like Filipov's can commands like "Squeeze my hand" and ogy at Boston's Spaulding Rehabilitation lay waste to cognitive processes. Major "Look at the ball." But many postcoma Hospital, who led the effort to have the traumas like the shooting wounds of patients suffer from aphasia, the inabil- "minimally conscious" diagnosis accepted Congresswoman Gabrielle Giffords can ity to understand language. Brain damage by the medical community. 44 1 culated in front of him. While he failed to respond to nearly every other test in the CRS-R,he became transfixed by his reflec- tion and avidly followed it with his eyes. "If every doctor in every emergency room carried a mirror in their pocket, it would immediately and significantly reduce the misdiagnosis rate," Laureys says. Even the most rigorous neurological exam cannot circumvent another diag- nostic obstacle, though. Many vegetative patients do not emerge into minimal consciousness until several months after waking from a coma, by which time they have been discharged from the hospital. "Afamily might tell a nurse in a care home that something's changed, but the nurse sees the vegetative label and dismisses this as wishful thinking," Laureys says. The irony-a cruel one-is that often doctors give up on recovery at the worst stage possible. The first few months after an injury can be a quiescent time fora damaged brain, with all its energy going to recovering from the wound it suffered. It's only later that it has the luxury to begin recovering some of its lost faculties. "You want to change the world?" asks Nicholas Schiff, a neurologist at Weill Cornell Medical College who, along with Laureys and a Canadian research group, is in the middle of a three-year project to study 500 patients with consciousness disorders. "Get these patients a six-month follow-up by experts who can do a behav- ioral assessment. Give them a safety net." To improve diagnostic accuracy, Giacino designed a rigorous, standardized The Eye of the Scanner bedside assessment called the coma recov- 40% WHILE BEHAVIORAL EXAMS REMAIN THE ery scale-revised (CRS-R),which Laureys SHAREOFPATIENTS primary diagnostic tools for assessing and others promote as the gold-standard DIAGNOSEDAS consciousness, a handful of neurologists exam. Some elements of the old method VEGETATIVEWHO around the world are using brain scans have been retained in the CRS-R,includ- AREMINIMALLY to try to map what they call the neural ing object recognition, in which the exam- CONSCIOUS correlates of consciousness, the cerebral iner holds two objects and asks the patient mechanisms that make us aware. For to fixate on one. But the CRS-R requires years, doctors assumed that consciousness each test to be repeated multiple times to was a diffuse and global brain process. But allow for fluctuating vigilance. studies of sleeping, anesthetized and veg- The primary reason for the CRS-R's etative brains have shown that it is instead improved accuracy, however, is a simple localized in a network consisting of three but revolutionary innovation. The test discrete parts: a section of the prefrontal measures patients' eye-tracking ability cortex; a section of the parietal cortex; and by moving a mirror in front of their face the thalamus, a structure deep in the brain rather than a finger or pen-the method that acts as a sort of traffic cop, mediating most neurologists use.
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