Vital Signs:Locked in Place

Andrea's accident had imprisoned her mind in a lifeless body. But how was anyone to know?

By David E. Levy|Friday, May 01, 1998
Each time andrea stuck her tongue out, it looked more and more as if she was trying to tell me something. I had met her only ten minutes earlier, but I already knew her background. Andrea had sustained serious head injuries in an automobile accident 13 months ago and was not discovered by the police for seven hours. On the way to the hospital, she had had a cardiac arrest. The emergency team was able to restart her heart, but she never regained consciousness.

Her three grown children had done everything they could to aid their mother’s recovery from coma—physical therapy, playing favorite music, stroking her, aromas, and even pleading with her. But after several months without any response, they had grown discouraged and begun seriously to consider how they could help fulfill their mother’s wishes. A divorced psychologist, Andrea had discussed with her children the case of Karen Ann Quinlan, the young woman who had sunk into a years-long coma, when it was in the news. She had made her children promise that if she was ever in what was called pvs, a persistent vegetative state, or was severely disabled and unable to express her own wishes, they would permit her feeding tube to be withdrawn so that she could die.

Now, 13 months after entering unconsciousness, Andrea’s family, through a lawyer, had asked me to examine her and perform a pet scan on her brain. pet, or positron-emission tomography, is a type of medical imaging done after injection or inhalation of compounds labeled with radioactive isotopes that emit positively charged electrons (positrons). With this technique, we can measure blood flow and glucose or oxygen metabolism in different brain regions.

Investigators at my medical center and I had already studied nine patients in prolonged unconsciousness. Most were vegetative, as we believed Andrea to be. They had sustained diffuse damage throughout the brain from trauma or cardiac arrest. Their pet scans showed striking reductions in brain blood flow and metabolism—more so even than when patients’ brains are stilled during deep surgical anesthesia.

A few, however, were not truly unconscious but instead were locked in. These patients usually had extensive damage in a more primitive region at the base of the brain called the brain stem. Within the brain stem is a clump of nerve fibers known as the pons, where messages between the brain and nerves in most muscles are exchanged. The effect of an injury to the pons is a little like the effect that would be produced by severing major telephone communications from a city. The city (the brain) is functioning but cannot communicate with the rest of the world (the body), so for all intents it appears that the city has been deserted. Locked-in patients have lost the ability to control the body voluntarily, but they retain some ability to control the face. Often they can move only their eyes. Although they are conscious, they are unable to communicate. We had studied only a few of these locked-in patients, but their pet scans all showed more normal brain blood flow and metabolism than the pet scans of vegetative patients.

Despite what we can learn about brain function from pet scans, I have always believed that a careful neurological examination can teach us more about an individual patient than such high-tech tools. As a clinical and experimental neurologist, I had examined several hundred patients comatose for at least six hours after a medical catastrophe like a cardiac arrest. Based on simple bedside examinations in the first few days of coma, my colleagues and I developed decision trees—a means of evaluating a set of symptoms and responses—that identified patients whose chance of regaining an independent life was particularly poor or reasonably good. Many patients fell in the middle, where even cautious prediction was not possible. I have never believed these decision trees to be foolproof, but most families (and courts) understand what it means to say that a patient has less than 1 chance in 20 of returning to an independent life. Americans can work with odds, and only a few seem to demand 100 percent certainty.

The first step had been to introduce myself to Andrea as if she were awake and conscious. In most vegetative patients I see only an impassive mask, but Andrea’s face bore a trace of animation. I thought there might be an intelligent being behind it. But this was merely an impression. The observable facts were that she did not speak and she did not move any of her limbs. I asked her to lift first one hand and then the other, and to move her feet. I asked her to look from right to left and noted some eye movement. I showed her several written commands in case she couldn’t hear me. No response. I clapped my hands loudly, and her body jerked, indicating that she had not suffered serious hearing damage.

I then asked her to stick out her tongue. And, slowly, out it came. Once again, and again, out came the tongue. I asked her to do the same when I said her name. Mary—nothing. Carol—nothing. Suzanne—nothing. Andrea—and out came the tongue again. After a few more questions, I was becoming convinced that Andrea’s mind was not only conscious but surprisingly intact. I cut to the chase. What is the square root of 169? Count with your tongue and give me the answer.

Her tongue moved in and out repeatedly. Finally she reached 13, then nothing more. That was it. The answer. Thirteen. She really was there with me. We established a code: once with the tongue for yes, twice for no. It was slow, but I proceeded to ask her several more questions about her life, geography, national history. And each question she got right. By asking questions relating to her care, I soon learned that she could recall several incidents that had taken place in her nursing home room in previous months. She had probably been aware of those speaking at her bedside for at least four months. From staff members, I learned that a few had thought she responded at times to commands. But her responses were rare and inconsistent, and no one was convinced she was conscious. That’s the locked-in state—in its way even more cruel than the vegetative state.

Now, the problem. I understand that you instructed your family to let you die if you were ever vegetative or seriously disabled. Is that true? Once with the tongue: yes. Do you still feel that way? Again, once with the tongue: another yes.

What was I to do? Did that mean she wanted to die? Now? At that point, I thought, I’m the only one who knows she is conscious, and she seems to be telling me she wants to die. I have always supported families in withdrawing care from vegetative patients. I even support patients with terminal illness making such decisions for themselves, as long as they are not making that decision while in the black grip of depression. But I had never been placed in this position. Andrea was conscious; was I not to tell her family?

Andrea’s breathing and pulse increased. She appeared agitated. She wanted to communicate something but couldn’t. After several false leads of questioning, I realized what Andrea was trying to express. She still wanted to die if she knew she would never improve. But now that her consciousness had been detected, she was convinced that she would receive intensive therapy, would improve, and would actually return to normal. Was that it? Her tongue came out once—yes. I called the family.

It took a little while for her children to accept that Andrea was conscious, but they quickly adjusted. The results of her pet scan showed that blood flow and metabolism in her brain was close to normal—like the few other locked-in patients we had examined and unlike the vegetative ones. Her ct scan, a sophisticated form of X-ray, showed spotty damage throughout her brain, but the damage was worse in the brain stem than in her cerebral hemispheres, the upper regions of the brain that carry out complex mental functions.

Andrea was lucky enough to have considerable financial resources, and that allowed her to undergo extensive therapy. Although it took time and enormous effort on her part, she did improve. Within a few weeks she was able to point with her left hand to letters on an alphabet board and spell out words and sentences. Some time later she got a computer equipped with a program that presented her with a stream of letters; she could press a button to select the letter she needed. After she selected the first letter, the program presented the most likely following letters, and even words, so Andrea’s means of expressing herself, while still tedious, became somewhat easier. Eventually she began to speak. Her speech was difficult to comprehend. It took tremendous effort both for her and her listeners, but she succeeded even in making herself understood over the phone.

What was it about Andrea that allowed for such an extraordinary recovery? Unlike most locked-in patients, her brain injury had apparently left important connections intact and allowed her to regain function through sustained effort. That effort, in turn, was fueled by her intense desire to be independent and control her world. Her hunger for independence helped speed her recovery, but it sometimes hindered her improvement. By asserting her need to have things done her way, she often antagonized those trying to help her. This need to assert control is common in all of us. It is especially understandable when we become sick. If medical staff, families, and others can accept it, tremendous strides can sometimes be made. But it can also engender resentment and withdrawal in staff, and that happened several times in those working with Andrea.

Sometimes her desire for control hurt her even when surrounded by good will. Andrea was very proud of her ability to formulate well-structured sentences. The problem was that her speech, though comprehensible, was garbled and thick. Many of us often misunderstood what she said. Despite requests from others to try a different wording, she would repeat the same sentence, word for word, over and over, and of course we would hear the same mistake over and over. She could have helped communicate but chose instead to dazzle us with her syntax—once (or if) we understood it.

After several more years, Andrea was living, with virtually 24-hour assistance, in her own apartment in Manhattan. My wife and I met her one evening and accompanied her as she manipulated her motorized wheelchair through the Museum of Modern Art. She insisted on going home alone by bus. On another occasion she and I went to a movie. Afterward, we stopped for coffee. Andrea handled her own coffee cup, although some of it spilled on her dress. On her fiftieth birthday, she surprised me by taking one or two steps on her own. She eventually persuaded a judge to dissolve the conservatorship that had been established to help her, and she took control of her own finances.

Andrea tried her best to earn money, but her impaired speech made it difficult to resume practice as a psychologist. She wrote several articles for lay and professional journals; her training allowed her to present insights that were helpful to many families and patients facing similar hardships. But these articles did not help her financially. She tried to sell her life story as a movie, but that fell through. She served on a local governmental commission for the disabled, but that was a volunteer effort. She was slowly going broke.

The end is consistent with Andrea’s life. Eventually her therapy exhausted her financial resources. She saw only two choices: either ending her life or going on government assistance—being institutionalized—and, as she saw it, losing the ability to control her life. She refused to consider moving in with her children or accepting support from relatives. She eventually concluded that her only choice was to commit suicide, and she announced that to the press. Several articles appeared over the next few weeks, and some unsuccessful legal efforts were made to stop her, but she was in full command of her mind. Although she had hoped the publicity might generate contributions, none materialized. She set a private date for her suicide. She knew that her swallowing was so laborious that if she took sedative tablets, she would probably fall asleep before taking enough to kill her. But when she was found dead, the empty bottle of tablets was lying by her side.

She died as she had lived, through tremendous and heroic force of will.
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