Let me introduce you to these three people: Thomas, Sandy and Vasso.
Thomas, at the age of 19, was in a devastating car accident. One month later, he still lay in a hospital bed, unresponsive, eyes closed, attached to a respirator. Over the ensuing month, his doctors succeeded in weaning him off the respirator, not as part of an attempt to arouse him and to help him recover, but to facilitate his placement in a nursing home. Eleven months later, Thomas was dead.
Sandy, a vivacious high school senior, was struck broadside at full speed as she was making a legal U-turn. The oncoming driver was drunk and driving close to 80 mph in a 45 mph zone. Sandy's passenger was killed. Sandy remained in a coma for two months with brain injuries that included her brain stem. Her family was told that she would not survive. Today, Sandy is a registered nurse and is the clinical director of a traumatic brain injury rehabilitation unit.
Vasso, 17 years old, was strangled by her boyfriend two years ago and left in a closet to die. I first saw her one month later, in an intensive care unit, with eyes open, but not responding, on a respirator. Her family had been told that she would not recover. Today, Vasso has all her mental faculties and has resumed art courses in pursuit of her pre-injury, highly developed artistic talents. Vasso is not fully recovered yet, but is well on her way.
Of these three names, please remember Thomas.
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During one's life, there are certain marking events. One particular event in my own life occurred in 1948, when at the age of seven, with my family, we landed at the airport in Casablanca. My parents were moving to Morocco.
As we came off the airplane and made our way through the terminal, I was struck by the number of native beggars sitting on the floor, and in particular by the children, many of whom were grotesquely deformed, with arms ending at the elbows, and little stubs of useless fingers growing right out of the elbow, and with misshapen faces. I later learned that these were the manifestations of congenital syphilis, but at the time I remember feeling for these children a great sense of unfairness at having to face life with tremendous obstacles that they had not even asked for or brought upon themselves. It was at that very moment that I decided that later on, as a doctor, the vocation that I had determined for myself five years earlier, I would devote my energies to some severe illness or disease that was neglected and not being treated or paid attention to.
In 1976, when I started practice as a neurosurgeon, I recognized the population that almost thirty years earlier I had chosen to help. Emergency calls were frequently for immediate attendance to teenagers and young adults who were in a coma following severe motor vehicle accidents. Many of them, after vigorous care and attention in the emergency room, sometimes in the operating room, then in intensive care, remained nevertheless in a coma. After about a month their families were then told to find a nursing home and to "turn a new page"! Somehow, something was wrong with this approach. How could we devote so much energy to a young life for only one month, then give up? Were there not already stories of individuals who awoke from prolonged comas? Did we not learn that the brain heals more slowly than any other body system?
***
To attempt to care for these patients would require breaking down a number of myths, some of which, unfortunately, still exist today.
The first myth is that no treatment is possible for prolonged coma. This concept is embodied in the widely used definition of coma: "a sleep-like state from which an individual cannot be aroused". Dr. Edward LeWinn rewrote the definition more appropriately as "a sleep-like state from which an individual has not yet been aroused".
The second myth surrounds the term used to describe a prolonged comas as a "persistent vegetative state". As much as Glenn Doman and The Institutes staff dislike labels such as "cerebral palsy", "autism", and "mental retardation", I abhor the expression "persistent vegetative state" or "PVS", as a label and all it stands for.
Despite the good intentions of its originators, Dr. F. Plum and Dr. B. Jennett, the term has been misused, misinterpreted, and has lay language connotations suggesting permanence of a vegetable-like state. All too often, patients are tagged as being in a PVS as early as weeks, days, or even hours after onset of a coma. The label then determines the outcome as a self-fulfilling prophecy because nobody is going to aggressively treat a PVS.
The third myth is related to dilated fixed pupils, which supposedly indicate an irreversible state.
The fourth myth resides in the statement that there can be no recovery from a brain injury, that the way an individual appears after an injury to the brain is the way that individual will remain–forever.
The fifth myth in the minds of many is that seizures are a bad sign. Little heed is paid to the notion that maybe an inactive portion of the brain may suddenly be showing some signs of activity, even if it is out of synchrony with the rest of the brain.
Myth number six refers to brain stem injury as a poor prognostic sign for recovery, as though Sandy, and all others like her, did not exist.
The seventh myth is that once on anticonvulsant medication, always on anticonvulsant medication. Fortunately, today many neurologists recognize that minimal medication is more effective than maximal medication and that, frequently, medication can be discontinued altogether.
Also well known is the eighth myth, that physical handicaps cannot be fixed and are treated with bracing and wheelchairs and other devices that reinforce the deficit.
The final myth in this listing is that when a recovery occurs it would have occurred anyway, or it was a miracle!
***
As I began to care for these young patients two enormous tasks lay ahead. The first would be to reverse the existing myths. The second and far more important would be to find a way to arouse individuals from a coma, or at least to provide them with the setting in which they could awaken.
A search became necessary to determine what existing rehabilitation facilities could do. Unfortunately, none, not even the most prestigious of them, was the least bit interested. They were locked into the physical manipulation of individuals who had physical musculoskeletal limitations but who were fully alert and cooperative.
In May of 1977, my wife, Joan, obtained an appointment to visit an Institute that she had read about and on which she wanted to write an article. The Institute was located in Philadelphia, and I found that time a wonderful opportunity to spend a day with my neurosurgical colleagues at the University of Pennsylvania. I was to meet Joan at our hotel at about four-thirty in the afternoon. At five o'clock she had not returned. Half-past five and six went by and still she had not come back. By seven I was genuinely worried, and much relieved when the phone rang at seven-thirty and I heard her cheerful voice at the other end of the line. You must come and see this place, she told me. The work they are doing is incredible and will interest you. Almost grudgingly I agreed to go with her the next day.
I had heard rumors about controversies related to The Institutes for the Achievement of Human Potential and was somewhat skeptical. I am pleased to say that the skepticism lasted less than five minutes, that a projected one-day visit stretched out to one week, and that seventeen years later I am still here, the proud husband of a professional mother the proud father of an Evan Thomas Institute graduate, and the humble messenger of The Institutes work.
During that memorable visit three words that I heard rang loud and clear and stuck indelibly in my mind: INTENSITY, FREQUENCY, DURATION. As applied to sensory stimulation, how eloquent, how true, how simple those three words sounded! In a complex world, I like simplicity. There is an affinity there for my simple way of thinking, and I had found the technique for coma arousal.
Elated as I was upon returning home from that one-week visit, a dilemma of some magnitude presented itself. As a young neurosurgeon seeking to establish a reputation in the community as a good and reputable physician, how could I apply the techniques of a controversial Institute? I was at risk of losing referrals, losing my position, maybe even being ostracized from the medical community altogether. What was I to do? Fortunately, the answer was easy. I was but a single individual while hundreds and maybe thousands of patients might benefit from the appropriate treatment. Ultimately, the truth and the right approach would prevail.
One question would remain to be answered to satisfy my curiosity. Had anyone in the past ever suggested that coma might be a treatable entity? The fairy tale stories of Rip Van Winkle, of Sleeping Beauty, and Snow White may well have been inspired by real life unexpected recoveries from prolonged coma, but I was in a real world, not a fairy tale one. An exhaustive search of the literature, going back beyond the usual ten years of past references generally used in the medical literature, I found myself delving even further into the past until I came across the pronouncements of a British neurologist by the name of Cook, who wrote in the mid-ninth century that "a coma patient needs vigorous stimulation." He further deplored the lack of studies on coma. Prior to Cook, I found nothing until I harked back to the works of the father of medicine, Hippocrates. To my astonishment, I found Hippocrates pronouncing that "the patient in a state of coma should be spoken to in a loud voice, splashed with cold water and exposed to bright light." This was certainly the correct message in terms of intensity, even if he did not mention frequency and duration.
Armed with the necessary tools and a high level of motivation supported by the desperate need of so many patients, I decided that if there were to be any negative components, by the simple laws of physics that for every force there is a counter force, each negative issue would be countered by a positive component.
Running the risk of upsetting the medical community and hospital routine with a new program with "controversial" techniques, it was useful and helpful to understand some of today's "chaos theory", according to which the world we live in is a dichotomy of order and chaos with an imaginary boundary between them. Order represents the basis of stagnation, while chaos leads to an opposite state of anarchy. Innovation occurs on the edge of chaos, zig-zagging along the imaginary boundary, seeking a balance between order and chaos. The boundary on the edge of chaos would be my future for the next seventeen years and maybe more.
***
Creating coma arousal programs in a hospital setting required, and still requires, ongoing education of the hospital staff, adaptation of The Institutes programs to the hospital setting, and a tremendous amount of teaching to the families of the patients. It would require changing hospital policy to allow family members to stay at the bedside twenty-four hours a day–a heresy in 1977!–and to allow the families to participate in patient care and treatment decision-making, compounding the heresy!
My greatest allies in this effort were the nursing staff, who immediately recognized the benefits to the patients as well as the assistance provided to them in their own busy schedules. Families were taught to turn the patients, suction their tracheostomy tubes, change their feeding tubes, and administer the necessary medications.
Despite hospital administrative opposition, we encouraged removal of tracheostomy tubes as soon as a patient could swallow and cough. To hospital administrators and staff physicians, this act appeared dangerous and fraught with potential liability. Their blinders prevented them from recognizing that a tracheostomy, acting as a foreign body, was actually an irritative source, causing the build-up of the secretions that they thought justified keeping the tubes in place in order to have access to the secretions to remove them. With a swallow and a gag reflex present, it was then possible to rapidly initiate feeding of normal foods by mouth and to eliminate the feeding tubes.
Foley catheters (catheters inserted in the bladder) were immediately removed once the twenty-four hour a day presence of a family member was ascertained, allowing for diaper changes as soon as they became soiled or wet. Reduction or elimination of unnecessary medications occurred in parallel with the other changes implemented. Initial programs of sensory stimulation were then organized on an hourly cycle repeated eleven to twelve times a day with appropriate rest periods and associated with good nutritional, nursing and medical care.
In my naiveté, I thought that once aroused from coma the patients would then be good candidates for the existing rehabilitation centers. Little did I realize that they would be turned down because "they were not cooperative" or because "they could not follow directions"! As a result, not only did it become necessary to teach families how to care for patients with very limited function and sometimes still with one or two tubes in their various cavities, in the home setting it also became necessary to formulate new home programs for each phase of improvement all the way to maximal or full recovery. This in itself has been a great and a wonderful learning experience.
***
The successful implementation of programs for coma recovery and brain injury "rehabilitation" have been facilitated by the Coma Recovery Association, a family support group founded in 1980 and totally run by families of patients with whom I had worked.
The Association has been instrumental in encouraging hospital support and acting as an advocate before the insurance industry and our elected representatives. This effort was further enhanced when the National Head Injury Foundation came into being with the same goals. Both organizations have also encouraged and funded educational conferences and workshops for lay and professional audiences. Unfortunately, the NHIF has been entangled in corporate political influence and dissension. The CRA continues to be a small but vocal and powerful organization.
Further public awareness of the possibilities was provided by a totally unsolicited written and televised favorable news media blitz that lasted a full ten years from 1978 to 1988. At first I was apprehensive about allowing the public media to announce our work before publishing in the established medical literature. But time was of the essence, and I was well aware of the snail's pace of developments when carried through the establishment. Furthermore, throughout the 1980s, denunciations of fraudulent so-called scientific studies published in reputable journals diminished some of the credibility of the "establishment".
Little by little, legislative changes prompted by advocacy and increased awareness have come into being. The first appeared in the California State Senate in 1984, recognizing severe disability resulting from brain injury as in need of special attention.
A report to the governor of the State of New York by the New York State Department of Health in 1985 and in 1986 was prompted by the CRA based on our work and by the New York State Head Injury Association. This report outlines the demography, the epidemiology, the existing deplorable status of care, and the needs both short-term and long-term of the head-injured patient, including those who remained in prolonged comas. The report culminated in a bill introduced in the State Senate in 1987. At the Federal level, Senator Kennedy introduced a similar bill in the United States Senate in 1993.
Encouraged by news media reports, legislative changes, and educational workshops and conferences, industry in part not-for-profit and mostly private, opened head injury rehabilitation facilities which now number approximately seven hundred in the United States. Many of these include in their offerings a coma stimulation program. I am not sure how one stimulates coma, but in fact, they intend to say that they offer programs of sensory stimulation for individuals in a coma. Some are very good, some are quite marginal, nevertheless, they are there.
My role, as a result, has become that of a consultant in some of the better of these facilities, teaching their staff and offering advice.
Some serious concerns crossed my mind when several large federally funded studies culminated in the formation of a Traumatic Coma Data Bank, the mission of which was to develop outcome studies. I feared a governmental attempt to predetermine who should benefit from treatment and who should not immediately upon arrival in an emergency room. Fortunately, my fears were unfounded, for the conclusions now coming out of the studies are that additional therapies are needed. Incidentally, the initial outcome studies followed patients for no more than six months to a year and suggested a poor prognosis. The above-mentioned conclusions were a pleasant surprise.
Sensory stimulation is now a recognized modality of treatment for patients in a coma. While maybe applied with less intensity, less frequency, and less duration than ideally expected, there do appear to be significant results. In 1977, there were 10,000 individuals in prolonged comas secondary to traumatic brain injuries languishing in nursing homes around the country. In 1993, the introduction to Ted Kennedy's Senate bill set forth the figure of 2,000 individuals in prolonged comas in our nursing homes.
***
Our work has been eloquently presented by Glenn Doman, along with Dr. Roselise Wilkinson and Dr. Ralph Pelligra in an article published in a British journal of rehabilitation. The work of The Institutes has spread far beyond its walls, and though much progress remains to be accomplished, a long road has been traveled.
In 1977, I had set a fifteen-year goal for local recognition of the value of intense sensory stimulation with a twenty-year goal for national recognition and twenty-five years at the international level. We are well ahead of the fifteen- and twenty-year goals, but I fear that we will have to extend the time for our international goals.
***
At the beginning, I asked you to remember the name of Thomas, the nineteen-year-old young man who eventually died after his head injury. He did not die of his head injury. He died of neglect and malnutrition. Had it not been for programs applied with INTENSITY, FREQUENCY, and DURATION, Sandy and Vasso, and all the other youngsters like them, would be with Thomas today.
Tomorrow, hopefully, all the Thomases will be like Sandy and Vasso.
