Coma is a state of unconsciouness from which the person cannot be aroused, even by powerful stimulation, or lack of any response to one’s environment (Brain Injury Association, 1999). As a result of a traumatic brain injury, some persons experience a brief period of unconsciousness while others more severely injured may lapse into an extended coma. There is a great deal of confusion about coma and the progression of response that provides information about expected outcome. Most families are initially unfamiliar with brain injury, terms used to describe levels of consciousness and methods for evaluating purposeful response. This can create a state of confusion which results in some families developing very unrealistic expectations about recovery while others lose all hope and fall into a state of despair.

Medical ethicists struggle with the issue of brain death, coma and “persistent and/or permanent vegetative state.” Periodically the media highlights the story of a person who miraculously emerges from a lengthy coma, but this kind of information can be very misleading when explored more thoroughly. Often it's determined that the person, although responding at a low physical and cognitive level, had in fact been interacting at a very primitive level within his/her environment over an extended period of time prior to what the media hyped as a "miraculous awakening." When supportive care is routinely provided, caregivers often are unaware that incremental changes are gradually taking place.

Evidence that supports this claim is noted in the New England Journal of Medicine in which a Texas doctor documents the slow return to consciousness of one of her patients. The patient, age 18, sustained a severe brain injury in a car crash in 1987. Although she opened her eyes after a few weeks, she remained unresponsive and was treated supportively for the next 15 months. At that time, nurses noticed that she seemed to obey commands to move her leg and close her eyes when they were tending to her. Despite the fact that her responses were inconsistent and rarely seen by others, doctors agreed to administer drugs intended to improve alertness.

She gradually began to improve and over time learned to answer multiple choice questions and do simple math problems using eye blinks. Three years post-injury she was communicating regularly with eye blinks and recovering limited motor function. After five years, she could mouth words and short phrases, although her attention span was very short. Five years and two months after the injury she was sent home. She is, as expected, severely disabled and dependent on others for care. But her family is thrilled with the fact that they can interact meaningfully with her and she appears to enjoy life. She is noted for her playful teasing of her caregivers.

The author of the New England Journal of Medicine article, Dr. Nancy Childs, of Healthcare Rehabilitation Center in Austin, TX, said, "The fate of these patients is simply too hard to predict for doctors to imply recovery is impossible." The Traumatic Coma Data Bank records indicate limited recovery from "permanent vegetative state," but the salient question is "when is vegetative state persistent and/or permanent?"

Dr. Childs proposes abandoning the term "permanent" and she is not alone in this thinking. Throughout the world there is an increased emphasis on trauma treatment and the use of newly developed drugs to enhance recovery and preserve injured brain cells. This research and treatment hopefully will shorten the time that persons with reversible brain injuries remain unresponsive to external stimuli and further improve their cognitive and physical functioning.

At the same time, greater emphasis is being directed to those whose brain injuries are considered by some to be irreversible. More aggressive treatment, less tendency to use labels such as persistent and/or permanent vegetative state may help ease the concerns of families early on, thus allowing them to stay more actively involved and hopeful. Most families will not believe that their family member will not someday wake up. It takes time and information to begin to cope with the possibility that awakening may be a long and arduous journey with an unknown destination. All families are anxious for any sign of response and overjoyed when even the most minimal changes occur over time.

The term coma is often misused and its misuse contributes to confusion on the part of family members as well as professionals less familiar with working with persons with brain injuries. Coma is defined as:

(1) not opening the eyes;
(2) not obeying commands; and
(3) not uttering understandable words.

To better and more consistently grade the severity of injury, Drs. Teasdale and Jennett of Glasgow, Scotland, developed the Glasgow Coma Scale in 1974. The Glasgow Coma Scale is universally used by paramedics at the scene of an injury, as well as emergency room personnel and throughout the early post-injury period. Its use is limited, however, to the early stages of the injury and should not be confused with the Glasgow Outcome Scale, which can be utilized appropriately at the time of discharge.

Individuals with severe injury can remain at low arousal levels for extended periods of time yet may respond in minimal ways on an inconsistent basis. Families struggle with efforts to prove to others that small movements and gestures are meaningful, yet staff seldom explain what kinds of responses can be charted as purposeful. This is when professional discretion should be exercised in applying such labels as persistent or permanent vegetative state. Families need a great deal of encouragement and support to maintain an optimistic outlook while beginning to cope with emerging evidence of long-term, life-altering disability.

In March 1995, an invited group of specialists met in London to discuss formalizing more appropriate language, diagnosis and management for these individuals. In this country, subcommittees of several organizations concerned with medical ethics and neurorehabilitation have successfully recommended the increase in the time frame from 6-12 months before consideration of an irreversible state or minimally responsive level.

As time passes and the individual's medical recovery is achieved, a better method for evaluating stages of recovery is the Rancho Los Amigos Scale of Cognitive Functioning. It is a functional performance scale that describes and categorizes the individual's level of function and can be done by an observer without patient participation. Clinicians can utilize many other evaluation and assessment tools over time to provide more definitive information about residual deficits and future planning.

It would be an optimistic era, however, when and if the medical community reaches consensus about the "minimally responsive state" and is expected to ensure that all individuals so diagnosed will be aggressively medically managed, receive appropriate pharmacological treatment to increase arousal and have the support and encouragement of an involved family.

Carolyn Rocchio is the parent of a son with a brain injury sustained in a 1982 automobile crash. She is the founder of the Brain Injury Association of Florida and a former member of BIA’s Board of Directors.

References

Brain Injury Association: National Directory of Brain Injury Rehabilitation Services. 1999.

Rosenthal M et al: Rehabilitation of the Head Injured Adult. Philadelphia: F.A. Davis. 7:102, 1983.