NOTE: Sandra DeYoung has not been in this field for many years. Please do not contact her.

Sandra DeYoung, RN EdD;
Robin B. Grass, RN BSN

Coma rehabilitation programs are proliferating in the United States. Their aim is to stimulate arousal of comatose patients and to rehabilitate them to a higher level of functioning. The International Coma Recovery Institute team evaluates comatose patients and designs individualized stimulation programs that are carried out by patients' families. Family support groups are provided. A case study illustrates the functioning of the program.

Shining bright lights intermittently into the patient's eyes, clapping two blocks of wood together periodically next to his ear, touching extremities with ice cubes - are these the hallmarks of good nursing care? They may be if you are caring for a patient in a coma rehabilitation program.

These unusual methods of care are one part of the stimulation sessions that many coma programs employ. The nurses, physicians, physical therapists and other health team members who work in such programs do not wait for nature to take its course with comatose patients. Instead, they are treating these patients with frequent intense multisensory stimulation, vigorous exercise and all of the nursing measures required to prevent complications of immobility and unconsciousness.

Coma care programs using this type of regimen are proliferating in the United States. They operate on the belief that the brain may have restorative powers previously not appreciated (Lasden, 1982). If a patient in coma can be kept in good physical condition in spite of neurologic damage, an optimum condition for rehabilitation will be present on awakening. Advocates of intense multisensory stimulation for comatose patients believe that such measures will stimulate the reticular activating system (RAS) of the brain (Snyder, 1983). The RAS is primarily responsible for arousal and wakefulness and will normally respond to all sensory stimuli including pain, pressure, touch, temperature, proprioception, vision, and hearing (Spielman, 1981; Taylor and Ballenger,1980). It is hoped that intense stimulation will help the patient to awaken and that repetitive stimulation will help to train previously unused portions of the brain.

Why this new interest in and allocation of resources to people in coma? Advances in health care have resulted in more patients surviving severe head injury, stroke, or other cerebral pathology. In the first quarter of the century, for example, 60-70 percent of severe head injury cases died, if not in the first few days as a direct result of trauma, then in the following weeks as complications occurred (Langfitt, 1978). Today, more patients are kept alive in intensive care units and survive for months or years afterward, often in a vegetative state. Research in the last 10 years has shown that mortality rates have dropped to 49-61 percent (Allen, 1979; Jennett et al., 1979; Jones, 1981; Levy et al., 1981). Coma recovery programs aim to improve the long-term prognosis of survivors who would otherwise persist in a vegetative or severely disabled condition.

The International Coma Recovery Institute (ICRI), based in a Northeastern suburb, has a liberal policy in terms of prognosis before admission to the program. In fact, for almost all patients accepted into this program, the prognosis is "hopeless" in terms of any recovery from coma; families have previously been told that the patient will never improve. The coma recovery team does not believe that most cases are hopeless. The ICRI program is based on the belief that in most cases the patient can be aroused and elevated to a higher level of functioning (LeWinn and Dimancescu, 1978).

The ICRI has been in existence since 1977 and has treated more than 250 patients. Ninety-two percent of those patients have aroused from coma, 35 percent have become functionally independent, and 57 percent have improved in physical and mental abilities. In only 4 percent of the cases has there been no change in condition. These statistics are even more impressive considering that the average program patient has already been in coma for six months by the time of admission. One patient was accepted who had been in coma for four years.

Description of the program

The ICRI program is different from most other coma recovery programs in that it begins in an acute care facility but is subsequently carried out in the patient's home. Patients remain in the hospital for seven to 10 days before returning to their own community, where the stimulation program is implemented. During the hospital stay, a thorough evaluation is done by the physician and nurse on the team. An EEG, CT scan and bloodwork are done. The patient is observed for hours at a time for many sessions to ascertain level of awareness and reactivity, with further input obtained from the family and staff nurses.

Also during this time, the patient may be weaned off drugs previously prescribed for seizures and spasticity. Often these drugs, such as diazepam (Valium®), phenytoin (Dilantin®), and phenobarbital, have been given in such high doses that they are contributing to the patient's lack of awareness. If anticonvulsants are necessary, they are given in low doses. The combination drug carbidopa/levodopa (Sinemet®), which is usually used for the rigidity of Parkinson's Disease, has been successfully used in this program to control spasticity (increased tone in flexor and extensor muscles) and rigidity (general increase in muscle tone with slowness of movement) in these patients, and does not sedate the patient as does diazepam.

If possible, tubes that the patient came with are removed. The Foley catheter is taken out within 24 hours and absorbent briefs or external collection devices are used. Tracheostomy tubes are removed if the patient has good cough and gag reflexes. Feeding tubes are removed if the patient has swallow and gag reflexes, is capable of swallowing semi-solid foods and is able to eat enough to maintain weight and good nutrition.

An intense multisensory and physical stimulation plan is then designed for the patient, usually by the fourth day in the hospital. This plan is individualized depending on the level of awareness and sensory and motor function of the patient (see Table 1). The initial observations and evaluation by the nurse and physician, previously mentioned, are the baseline assessment on which the patient's program plan is based. The patient's reactivity to the stimulation of each sense is recorded on a scale of 1-6, as are motor functions of the extremities. Reactivity that is low on the scale indicates a need for a more intensive stimulation program than reactivity that is closer to 6 on the scale (see Table 2). As the word multisensory implies, all the senses are stimulated at the level that the patient requires. For example, if the patient's eyes are always closed or there is lack of a blink reflex, visual stimulation is done by shining a 650-watt light on the eyes, one second on, one second off, and repeated several times. The bright light stimulates the blink reflex, and once this reflex returns, this intense stimulation is stopped.

In the experience of the ICRI, the brightness of the light has had no harmful effects on the patient's retina. Visual stimulation of a patient at a higher level on the scale may be done by trying to stimulate the patient to follow the movements of a penlight with the eyes, or, for a patient at an even higher level on the scale, flash cards with words, commands or pictures may be used. Auditory stimulation at the lowest level might consist of banging two pieces of metal or wood together about 12 inches from each ear several times in succession. At a higher level it might involve using high-pitched tuning forks, a pitch pipe or a xylophone, or at a very high level, teaching the patient to follow commands.

The other senses are similarly stimulated. Olfactory stimulation may be done by holding ammonia or vinegar under each nostril for one to five seconds, or later by using familiar strong-smelling substances that the patient can identify, such as cinnamon or mint. Taste sensation can be stimulated with sweet or salty solutions placed on the tongue. Touch, pressure, temperature and pain sensations are all stimulated in some manner.

Physical stimuli always include range of motion exercises to all joints and may also encompass rolling, arm reaching, or in the case of small children, holding them upside down. Breathing exercises are also included as a part of the program. A small plastic bag is placed over the patient's nose and mouth for one minute. This technique encourages deep breaths and makes the patient re-breathe carbon dioxide. The purpose of the exercise is to prevent atelectasis and pneumonia, to dilate capillary blood vessels in the brain, and to reduce the incidence of seizures (Gibbs and Gibbs, 1952). The exercises are done 60 times throughout the day.

Following development and plan implementation, the nurse teaches the family member to carry out the program and any other nursing procedures that are necessary. The patient is evaluated for tolerance of the program by monitoring pulse and respirations; development of any seizure activity signals a need for a change in medication or a change in the program.

The family members practice going through the stimulation program for a few days until they feel secure, and the nurse evaluates their performance. Usually the family goes through the stimulation cycles about five times a day in the hospital; but when the patient is sent home, it is expected that the cycles will be carried out about 11 times a day. Each cycle of sensory and physical stimulation and breathing exercises takes approximately 45 minutes. Rest periods or other care requirements are carried out between cycles. The entire program is usually carried out for a maximum of 12 hours a day.

Patients are kept on the ICRI program as long as the family wishes to participate in the program and as long as the patient is showing progress. If no progress is seen in the first four to six months, during which time the stimulation cycles have been carried out 11 times a day, a conference is held with the family, the physician and the nurse to discuss the lack of progress and futility of continuing with the program.

Role of the family

After the patient has been discharged from the hospital, the patient may go home to be taken care of by private duty nurses or by the family; a few patients have gone to nursing homes where private duty nurses provide care. Frequently, the private duty nurses are hired from an agency that trains a group of nurses to work with coma patients. The family always retains the primary responsibility for the program's implementation. Sometimes family members themselves teach the nurses how to carry out the intense multisensory and physical stimulation program. Physical therapists and speech therapists are consulted as necessary.

The family always has access to the ICRI by telephone. The secretary in the ICRI office will usually refer families to the nurse. The nurse will make referrals for any problems or questions she cannot handle. Patients return to the hospital every three to four months for re-evaluation and stay for about three days. Problems are also discussed at that time and any necessary changes in the program are made.

In July 1980, families of patients founded the Coma Recovery Association, Inc. It is a large support group that meets twice a month and has educational programs, fund-raisers, and social events. There are three additional branches of the association meeting in varied geographical locations. This group is of immense importance to many families who often travel long distances to attend. Mutual and individual problems are discussed, crises are handled, and most importantly, families are made to feel that they are not alone and that others share their concerns. The physician, nurse and psychologist also attend these meetings.

Nursing patients in a coma program

Nurses working in coma recovery programs find they are exciting and challenging. Over the long run, however, burnout frequently occurs. A lack of significant improvement or the slowness of improvement and the eventual monotony of the routine probably contribute to the problem. A study by Loen and Snyder (1980) of 91 nurses who worked with comatose patients revealed that 38 percent of the nurses believed the "hopeless situation" of the comatose patients made nursing care difficult, and 36 percent believed the nurse should be reassigned every two to three days. Research has not yet been done with nurses who work with patients in coma recovery programs. Although the situation is not hopeless, it seems likely that the burnout rate will still be high. It may be important periodically to reassign the private duty nurses who work with patients recovering from coma so that the stress and unvarying routines will not cause them to drop out of the program.

Nurses who work with coma patients in acute-care settings would do well to investigate various coma recovery programs in their areas to see what they have to offer the comatose patients and their families. Inpatient facilities may be the best choice for families who cannot take on the responsibilities of patient care. Programs like the ICRI are most suitable for families who are aggressive and who want to be involved in the care of their loved one, if not totally responsible for it. The nurse can help to guide these families and can help them to find some realistic hope where it exists.

No nurse or health team member should attempt to institute an intense stimulation program for a comatose patient without the guidance of medical specialists in the field. The stimulation must be managed by experts.

Coma recovery programs such as the International Coma Recovery Institute are exciting ventures in coma care and offer hope where none existed before. If even a small percentage of patients are returned to independent living, this innovation in health care will have justified its existence.

References
Allen, N. (1979). Prognostic indicators in coma. Heart and Lung, 8, 1075-1082.

Gibbs, F.A. and Gibbs, E.L. (1952). Atlas of electroencephalography, vol. 2: Epilepsy. Reading, Massachusetts: Addison-Wesley.

Jennett, B., Teasdale, G., Braakman, R., Minderhoud, J., Heiden, J., and Kurze, T. (1979). Prognosis of patients with severe head injury. Neurosurgery, 4, 283-288.

Jones, C. (1981). Outcome following closed head injury. Journal of Neurosurgical Nursing, 13, 178-182.

Langfitt, T. (1978). Measuring the outcome from head injuries. Journal of Neurosurgery, 48, 673-678.

Lasden, M. (June 27, 1982). Coming out of coma. The New York Times Magazine, 28-35, 38, 40, 54.

Levy, D.E., Bates, D., Caronna, J.J., Cartledge, N., Knill-Jones, R., Lapinski, R.H., Singer, B.H., Shaw, D.A., and Plum, F. (1981). Prognosis in non-traumatic coma. Annals of Internal Medicine, 94, 293-301.

LeWinn, E.B., and Dimancescu, M.D. (1978). Environmental deprivation and enrichment in coma. The Lancet, II, 156.

Loen, M. and Snyder, M. (1980). Care of the long-term comatose patient: A pilot study. Journal of Neurosurgical Nursing, 12, 134-137.

Snyder, M. (Ed.). (1983). A guide to neurological and neurosurgical nursing. New York: Wiley.

Spielman, G. (1981). Coma: A clinical review. Heart and Lung, 10, 700-707.

Taylor, J.W. and Ballenger, S. (1980). Neurological dysfunctions and nursing intervention. New York: McGraw-Hill.

Acknowledgements
The authors wish to acknowledge the help of M. Dimancescu, MD, founder of the ICRI, in the preparation of this article.

NOTE: Sandra DeYoung has not been in this field for many years. Please do not contact her.