What Happens When You Come Out of a Coma
COMING OUT OF COMA
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June 27, 1982
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On the afternoon of Dec. 13, 1979, Sgt. David Mack and eight other members of the Minneapolis Police Department smashed through the door of a rented house in search of stolen property. When the man inside started shooting, Mack was struck in the abdomen and the neck; he stopped breathing, lapsing into a coma. ''Sergeant Mack will never regain cognitive, sapient functioning,'' said Dr. Ronald E. Cranford, an associate professor of neurology at the University of Minnesota Medical School, six months later. ''He will never be aware of his condition nor resume any degree of meaningful voluntary conscious interaction with his family or friends.''
On Oct. 22, 1981, doctors discovered that Mack was awake. Severely paralyzed, unable to speak, Mack returned to consciousness with his intellect intact. Though his recovery hardly resembled the brighteyed, rosy-cheeked version seen on soap operas, Mack was able to communicate clearly through a system of eye movements. Dr. Cranford comments: ''The lay press is filled with articles about miraculous cures, and usually they don't pan out. But the fact that Mack awoke calls into question the way we assess these cases. ... It introduces an element of uncertainty into a situation that was very difficult to begin with.''
The case of Sergeant Mack occurs at a time of a growing debate in the medical world over what can and cannot - indeed, what should and should not -be done for those whose brains have been injured severely enough to put them into coma. The conventional wisdom has been that either a brain got better after a certain period of time or it wasn't going to, and the medical community does not normally devote substantial resources to keeping ''hopeless'' cases alive. Today, an increasing number of experts are challenging those assumptions.
Debate has arisen over some very basic medical facts, as basic as whether a particular brain-damaged patient is dead or alive. Thirtyone states and the District of Columbia have legally endorsed the concept that human life is at an end when the brain is dead, a concept recommended by a Presidential commission. But similar moves have been stalled in such states as New York by those who see the definition as a first step to legalized euthanasia. Some critics ask whether the medical establishment, given the instances of unexpected recovery from coma, really know enough about the brain to make such judgments.
Over the last few years, the debate has been stoked by a number of controversial new approaches to treating the long-term comatose; they share a greater faith in the restorative powers of the brain. In some cases, for the first time, hospitals are providing extensive, longterm nursing care for those usually allowed to deteriorate. In other institutions, this same kind of patient is exposed to intense external stimulation - an ice cube placed on his bare arm, the crashing of blocks of wood beside his ears - in efforts to ''awaken'' him from coma. Since there are no accepted treatments for helping such patients, and since even the more elaborate stimulation procedures are not likely to harm anyone, the medical establishment has not interfered.
Those who emerge from coma survive with a brain that is, in varying degrees, different, and their problems are psychological as well as mental and physical. The emotional wear and tear on the patient and his family is matched by the financial sacrifice - it costs hundreds of dollars a day to keep a coma patient in intensive care, and the total cost of extended rehabilitation afterward can be even greater. Two years ago, a handful of families and concerned professionals in the Boston area began the National Head Injury Foundation. Now, the foundation offers information and emotional support to a membership of more than 2,500 people from coast to coast.
There is another factor that is adding a sense of urgency to the debate -the pressure of numbers. Each year, according to the National Head Injury Foundation, as many as 100,000 Americans receive severe head injuries that thrust them into a limbo between life and death. Most are caused by automobile accidents, though drugs, bullets and strokes also take their toll. But whereas perhaps 90 percent of the victims died just 20 years ago, modern emergencyroom and intensive-care technology now makes it possible for half of them to survive, and the percentage is rising. The buildup of pressure inside the head is the leading cause of death among those with severe head injuries who make it to the hospital alive. According to preliminary studies, the widespread use of massive doses of barbiturates, one of the latest procedures to control that pressure, could save thousands of lives a year. The first question the physician must answer when confronted by the severely brain-damaged is this: Is his patient still alive? The brain-death definition, proposed by the Presidential commission and backed by the American Medical Association and the American Bar Association, is followed by most physicians. It says brain death is ''the irreversible cessation of all functions of the entire brain, including the brain stem.'' The physician must still, however, make sure that the ''cessation'' has actually occurred. The commonly accepted tests to determine brain death were set forth in 1968 by an ad-hoc committee from the Harvard Medical School. The most significant of the tests recommended concerned the brain stem - that part of the brain that controls unconscious body functions such as breathing and swallowing. If the brain stem is destroyed, the rest of the brain cannot long survive. The electroencephalogram (EEG), which measures activity in the cortex, seat of such higher functions as thoughts and emotions, was mentioned by the ambiguity. A comatose patient may open his eyes, move and even cry while still remaining unconscious. His brain-stem reflexes are attached to a nonfunctioning cortex. Reflex without reflection. Many professionals speak of this condition as a ''persistent vegetative state.'' Recently, however, some experts have begun to suspect that there may be something else stirring.
Karen Ann Quinlan has been in that state for seven years. Her parents had won the legal right to have their terminally ill daughter removed from a respirator, but when the plug was pulled, she went on breathing. Time and time again, neurologists have confirmed that Karen is totally unaware of her environment. Yet Joseph Quinlan, a gentle, 57-year-old man, is not so sure.
Twice a day, every day, Quinlan visits his daughter at a nursing home in Morris Plains, N.J. ''Sometimes,'' he says, ''if I'm talking to her on one side of the bed and I move to the other side, she seems to follow my voice. Not that she'll look right at you, but sometimes her head will turn slightly and she seems to have sensed that you've moved. Occasionally, and thank God it doesn't happen very often, she'll get extremely restless. She'll grimace, swing her head back and forth and roll her eyes around the room. It disturbs me when I see her like that, and when all else fails, I'll try to calm her down by playing her music box or one of her favorite songs on a cassette tape recorder. ... One of her favorites is Simon and Garfunkel's 'Bridge Over Troubled Water.' That always seems to help.''
Doctors are wary of such reports from devoted family members. Brain-stem reflexes can generate powerful illusions, they say. But, lately, they have begun admitting to some confusion over the criteria for awareness. One key test, for example, is the degree to which a patient's eyes can follow a moving object. Such movement may imply both sight and volition. Yet some patients who fit all other criteria for being in the vegetative state are able to track objects along a 20-degree arc. Reflex or reflection? The same sort of ambiguity applies to a patient's response to a stimulus, such as a poke in the side. If the patient's whole body jumps and he has no other reaction, he is clearly operating only on the level of brainstem reflex. But suppose he makes a slow, vague movement in the direction of the stimulus - is it some primitive sign of awareness?
Such uncertainties make the families of some coma victims increasingly hesitant to accept a doctor's ''no-hope'' declaration, and the highly publicized progress of a comatose celebrity strengthens that tendency. Last January, Tony Conigliaro, a former Boston Red Sox star, went into coma after suffering a massive heart attack that left his brain deprived of oxygen for more than 10 minutes. The prognosis was grim, but his father insisted that the patient be exposed to unorthodox treatment. A nutritionist prescribed large doses of a wheat-germ-oil derivative. An osteopath administered low-voltage electrical treatments. An acupuncturist and a Russian psychic healer practiced their crafts. In the months since then, Tony Conigliaro has emerged from coma; last month, he was reported to have spoken his first coherent words since the heart attack: ''Hi, Mom. Hi, Dad.''
Experts do not believe that Conigliaro's limited recovery - he remains partially paralyzed - was caused by wheat-germ oil or acupuncture. On the other hand, they do not know why Conigliaro has beaten the odds and awakened. They concede that the brain may have restorative powers that are not yet understood.
That premise underlies much of the work at Western Massachusetts Hospital, a state-operated chronic-care facility in Westfield, about 100 miles west of Boston. Three years ago, Eleanor Davio, the nursing director, proposed turning one of the wards into a unit exclusively dedicated to treating the long-term comatose. ''We know that we can't do anything miraculous,'' she says, acknowledging that the chance of significant improvement for any of the 33 coma patients is less than 1 percent. ''But where there is life there is hope.''
The facility provides these patients quality nursing care. Diet is managed to maintain optimum weight, bodies are rotated to avoid bedsores, limbs are regularly stretched and turned to control atrophy, patients are hoisted from their beds in slings and placed in chairs to maintain the strength of their cardiovascular systems against the pull of gravity. If it turns out that one of the patients shows signs of recovery, his body will be ready. The care provided is not unlike that accorded Sgt. David Mack in Minneapolis because of the publicity attending his case. Those who maintain comatose patients in nursing facilities have learned to avoid optimism. But there are professionals today who take a dramatically different view. They maintain that even the most primitive sign of sentience may offer opportunities for rehabilitation.
A leading supporter of that proposition is Dr. Sheldon Berrol, assistant clinical professor of rehabilitation at the University of California, San Francisco, and chairman of a national medical task force on head injury. ''A person may seem inattentive,'' he says, ''but that may be because he's paying attention to the wrong things. In other words, he may have lost the ability to select what's most important about a stimulus and attend to it. So our job is to retrain the patient how to do that.'' Dr. Berrol is exploring the potential of a damaged brain's undamaged parts to adopt new functions.
One approach is to present a particular stimulus to a patient in the most simple, easily absorbed form possible. His responses are elicited, then seized upon and played back to the patient. At a minimum, such efforts are maintaining whatever pathways exist through which the patient can purposefully interact with the outside world. Beyond that, they are seen as a possible means of teaching the undamaged parts of the brain new tricks and thereby speeding up the recovery process.
Among the patients at the Greenery, a 200-bed nursing home in Boston, there are 41 on the coma ward who have cognitive levels so low they would be admitted to virtually no other rehabilitation program in the country. In rooms filled with sunlight and bright colors, nurses, occupational therapists and physical therapists put their charges through a rigorous daily regimen. The patients are constantly being touched and exercised and talked to. Twice a day, for about 15 minutes at a time, they receive structured stimulation, whereby they are exposed to ice water, bells, peanut butter. Soap bubbles and colorful balls are presented to induce them to track objects with their eyes. Among the residents of the Greenery, an appropriate finger movement, a smile, even the blink of an eye is seen as cause for celebration.
The Greenery has been in the business of rehabilitating the headinjured since 1973, but it is only within the last few years that it has been treating patients at the lowest functional level. On the average, according to Greenery officials, 40 percent of these cases recover sufficiently to make them eligible for more advanced rehabilitation.
In May 1981, the day after her high-school prom, 17-year-old Jill was in an automobile crash. One passenger died immediately. Jill was found with her head wedged between the car's two bucket seats. She was expected not to live. Three months later, she entered the Greenery.
Photographs of Jill's family hang on the wall of her room, put there in the hope that, at some moment, she may look at them and recognize them. Jill is tall and heavy, and she cries in a deep, breathy monotone, constantly starting and stopping. She is able to respond to stimuli in a localized fashion rather than just a generalized manner, reacting in the direction of the stimulus, but her responses are inconsistent and delayed.
''Now, Jill, blink your eyes twice if this is cold,'' says the young therapist as she rubs ice on Jill's arm. Jill is sitting propped up on a bed, staring blankly ahead. She has just stopped crying. As the ice is rubbed on her arm, there is one blink, then nothing.
''No, Jill? It's not cold? Well, how about this? Blink twice if this smells bad.'' The therapist puts a piece of gauze soaked in vinegar under Jill's nose. This time, Jill responds with two blinks. ''That's right, Jill,'' the therapist says excitedly. ''It does smell bad. Terrific, Jill! Now, blink your eyes if ... .''
Some days, Jill does better than others, but even on her best days, she has yet to walk or talk or demonstrate an intact intellect. Dr. Mihai D. Dimancescu, a Long Island neurosurgeon with a quiet, formal manner, also practices structured stimulation, but with a dramatic difference. He mobilizes his patients' families to work on their loved ones -for up to 16 hours a day, every day, for months at a time. Dr. Dimancescu focuses upon the reticular activating formation, a key mechanism whereby the brain is alerted to stimuli. Awake or asleep, the reticular activating formation is continually monitoring the outside world, ready to sound the alert, whether the stimulus be a screaming child or a ringing alarm. Dr. Dimancescu believes that many comatose patients do not awaken because their reticular activating formation is malfunctioning. His solution: to bombard the patient with a level of sensory stimulation far more intensive than is provided at the Greenery. He says the trick is to ''knock on the door as hard as you can, as often as you can, for as long as you can.''
His patients stay two weeks at the South Nassau Communities Hospital or Nassau Hospital on Long Island. The family has that time to learn his methods and prepare for the ordeal ahead. The regimen he prescribes, performed many times each day, includes these sensory exercises aimed at the patient: extemely bright lights, turned on and off 10 times; ammonia held to each nostril for up to five seconds; two blocks of wood smashed against each other three times, one foot away from each ear; a light touch from one end of the body to the other; painful pressure brought to bear on each fingernail for five seconds. Dr. Dimancescu also stipulates that each joint in the neck, shoulders, wrists, elbows, fingers, hips, knees and ankles be put through as many as 200 movements a day. Every three months, he reevaluates each patient; the regimen changes if responsiveness improves.
''I don't know whether what we're doing here is the right thing,'' Dr. Dimancescu says, ''but I do know that we're getting results. And as long as we continue to get results, I'm going to continue to do it.'' He claims that 92 percent of his 150 patients have emerged from their comas. There is no shortage of skeptics about such ''wake-up'' therapies. ''I don't want to be the bad guy and I don't want to prevent these people from getting better,'' says Dr. Edward J. Hart, a neurologist who works just down the road from the Greenery at the Kennedy Memorial Hospital. ''But we have a lot of responsibility to direct our scarce resources where they are most needed. And there is not a shred of evidence that any external stimulation - talking, moving or doing anything from the outside - has any impact on the mechanisms of the brain that cause coma. In fact, there is every indication that the recovery all happens within the brain cells. To talk and sing to patients whose brains do not allow a lot more than breathing and eye-tracking is like giving French lessons to a 2-year-old.''
The failure of the Greenery officials or Dr. Dimancescu to provide documentation of success in a professional medical journal feeds the criticism. Dr. Fred Plum, chief neurologist at New York Hospital-Cornell Medical Center and among the authors of a definitive study on coma recovery, comments: ''Dr. Dimancescu has been telling us for some time that he was going to publish his results. Maybe the guy has something. I have no bias. But why doesn't he tell the rest of us about it?''
There is one aspect of coma treatment, though, upon which all the experts agree: Time is the enemy of the comatose patient. The longer the mind and the body lie dormant and unused, the greater the atrophy and the less the chance of recovery.
Thus, Dr. Berrol proposes bringing the stimulation process right into the hospital's intensive-care section. And the Greenery has recently begun favoring would-be patients whose injuries are less than a year old.
By reserving the best care for the newly injured, however, authorities may be setting in motion a self-fulfilling prophecy. Dr. Cranford, who had diagnosed Sergeant Mack as hopeless, comments: ''We say that patients don't recover if they show no signs of improvement after six months. Well, maybe the reason they never recover is that they're never given the opportunity to recover. We decide not to treat their complications and they die. Mack got much better nursing care for a longer period of time, because the case got a lot of publicity. If he'd been treated like everyone else, I don't think he would have stood a chance.'' The first positive sign that a brain-damaged patient is emerging from coma with a chance for a significant recovery is often a display of agitation, even aggression. Only a well-coordinated brain, structurally speaking, can produce the kind of disorganized behavior that appropriately reflects the frustration - even terror - of not knowing where you are or where you've been, of not being able to remember what is being said to you from one moment to the next.
Once a patient emerges from coma, he must relearn how to walk and talk and feed himself, tasks that can be mastered only by means of hours and hours of physical therapy. But the physical recovery is likely to be relatively quick and complete compared with the severe and lasting emotional problems.
Muriel Lezak, the neuropsychologist at the Veterans Administration Medical Center in Portland, Ore., lists some of them as follows: an impaired capacity to empathize or self-reflect, to control one's emotions, to plan and organize activities. ''Friendships, work, close relationships,'' she says, ''all of the things that make life worth living, are affected.''
Pessimism has long been the order of the day in treating such postcoma patients. At the Santa Clara Valley Medical Center in San Jose, Calif., Dr. D. Nathan Cope, the director of the head-injury rehabilitation unit, acknowledges: ''The literature says that if people stop improving after 6 to 12 months, the treatment should stop because you're just spinning your wheels.'' But he adds: ''That really isn't true. If you put the patient in an environment that promotes change and look two years later, you'll see change. We see that in our community program here. Forty-seven percent of the people in the program who by normal standards would be judged as reaching their limit continue to improve.'' That is the theory, but there are few rehabilitation programs comparable to that at Santa Clara. And that leaves the families of severely brain-damaged patients trapped between hope and despair, tormented by unresolved grief, anger and a sense of helplessness.
Those feelings are behind the growth of the National Head Injury Foundation, which is devoted to keeping members and the public informed about the problem. The Coma Recovery Association, formed in response to Dr. Dimancescu's program, offers the families of the brain-damaged a more intimate support network. At meetings in the South Nassau Communities Hospital, they boost one another's morale with stories of progress and vent their anger over nameless physicians who said it wasn't possible. They have an evangelical zeal founded on the belief that they have found salvation.
The new coma-recovery programs have heightened the expectations of many families, yet these programs remain unproved. They have thus far failed to provide the kind of scientific documentation of success their critics require. The debate over what can and cannot be done to improve the condition of the comatose patient remains unresolved.
What Happens When You Come Out of a Coma
Source: https://www.nytimes.com/1982/06/27/magazine/coming-out-of-coma.html