Thursday, June 22, 2006
Coma: Reel Life Is Not Real Life
BY CAROL LEVINE

It’s a familiar scene in the movies or on television. “Your wife is in a coma,” the doctor says, “and we’ll just have to watch and wait.” No one should go to the movies for a medical education, but given the power of film to influence popular attitudes and belief, one might think that depictions of coma would be more or less accurate.

Not so, according to a recent study published in Neurology. Based on a review of 30 contemporary movies, neurologist E.F.M. Wijdicks of the Mayo Clinic and his son Coen found only two movies from 1970 to 2004 (“Dream Life of Angels” and “Reversal of Fortune”) that were reasonably accurate. Yet when they showed scenes of the movies to administrative staff at the Mayo Clinic and the American College of Neurology, these individuals, who had more than a passing acquaintance with health care, failed to identify over a third of the misrepresentations. Thirty-nine percent would let these erroneous beliefs influence their own decisions. Imagine how a truly random population might score!

Even without this study, I know that reel life is not real life. Sixteen years ago I too watched and waited for my husband Howard to “wake up” from a coma resulting from the severe traumatic brain injury — TBI in medical lingo — he suffered in an automobile accident.

In the movies, everything happens very fast. One minute the patient is unresponsive, the next he is sitting up and talking. Usually some stimulus — a mosquito bite in “Kill Bill Volume 1,” the smell of a burning cigarette in “Blind Horizon” — awakens the patient. Every case is different, but if my husband’s experience is any guide, emerging from a coma or a TBI is a slow, arduous, erratic process, as challenging in its own way for the family as for the patient. No matter the medical outcome, life is never the same.

In the first four months, Howard’s coma gradually “lightened” and he responded to verbal commands like “Stick out your tongue!” But he showed no signs of recognition and remained silent. One evening Nurse Keiko at the rehab center called me at home and said excitedly, “He says, ‘Telephone call! Telephone call!’ ”
 
My daughter and I rushed to his bedside. By then he had lapsed back into unresponsiveness. But over the next several weeks he did whisper a few words, knew who I was, and seemed to be aware of his surroundings. But awareness brought agitation, frustration, and rage. In the beginning everyone urged him to speak up, but when he recovered his voice, it was often to shout and scream. Not fully understanding the purpose of physical therapy, he resisted its imposition on his body. Therapists and nurses grew increasingly intolerant of his outbursts.

Over the next several months he gradually recovered speech, although it was halting and often incoherent. He knew he was in a hospital, but he thought he was in a foreign country, where everyone spoke a strange language. Indeed, some of the aides spoke Spanish, but his sense of alienation was much deeper than their unfamiliar words.   

He could not remember the names of ordinary objects and described them in fanciful, even poetic terms. A spoon became a “slender silver eating tool,” a book, “words, words, words on paper.”     

These moments were almost light-hearted in the context of his alternating periods of rage and catatonic withdrawal. He was put on a suicide watch even though there was absolutely nothing he could have done to hurt himself.  One medication induced hallucinations of snakes crawling over his bed. When the doctors refused my request for a psychiatric consultation because, I was told, “everybody with head trauma says crazy things,” I called in a psychiatrist on my own.

Some of the worst moments revolved around his attempts to understand the loss of his right forearm, which had been amputated as the ultimate consequence of medical errors that began in the ICU. He believed that his missing arm was somewhere else on his body and repeatedly asked me to place his wheelchair in front of a mirror so that he could find it. This outcome of the accident was more than his still-fragile mind could absorb.

I wish I could say that 16 years on, all is well. Certainly compared to that horrible first year, the situation has improved. Howard is “awake,” but his memory is poor and his thinking often confused. He is also essentially quadriplegic, requiring round-the-clock, total care for his physical disabilities. An accomplished university administrator, he was never able to return to work.  

There are moments when his intelligence, wit, and innate curiosity re-emerge. Curiously, his geographic memory of New York City streets, embedded since childhood, has remained intact. But these flashes of his old strengths are outweighed by periods of confusion, depression, and fiery impatience.

Medical treatment and rehabilitation methods have improved patient outcomes in the 16 years since his accident. But nothing has changed the anxiety for families who watch and wait for a magic moment of awakening. People in those desperate moments may cling to the only evidence about coma they have ever seen, even if it was only a movie. At worst, they may make poor medical decisions based on these erroneous impressions. At best, their journey into the unknown has just begun.

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