ComaCARE -hearing the silent voiceHearing the silent voice

Spare capacity and reorganization refer to the brain's apparent ability to reorganize its functions following injury. The premise of this theory is that many parts of the brain are non-active or "spare", so that when damage to another part of the brain occurs this "spare" area is able to assume the function of the damaged area, thereby compensating for any potential loss of function.

Professor Lorber’s research on people with spina bifida (A neural tube deficiency in which the spinal chord does not close completely in utero) illustrates this theory. Many of the subjects had cerebral ventricular expansion (fluid on the brain) greater than 90% of the cranium, however over half had IQ scores of greater than 100 and one an IQ of 126 and a first class honours degree in mathematics. It would appear that time is a critical factor if this adaptability is to occur. The slower the insult to the brain, such as a gradual hydrocephalus, the more likely the brain is to adapt. Also with ComaCARE the sooner patients can be interacted with, the more time their brains will have to adapt.

The redundancy theory is closely related to the theory of reorganization and refers to the brain’s apparent ability to duplicate neuronal pathways. Therefore, if one pathway is damaged the other will be able to take over. It is believed that this duplication of pathways is the result of evolution.

The response at a cellular level theory revolves around the scientific fact that when cells in the central nervous system are dead, recovery does not occur. From this has come research on the subsequent effects on cells around the dead area. The work of Lui and Chambers in 1958 demonstrated that the undamaged axons of the neurons send out new connections in an attempt to re-wire the system, a process called collateral sprouting. In this way the brain attempts to compensate for its slowness to grow new cells.

The environmental effects theory refers to the improved performance that is noted in animals and humans when increased environmental stimulation occurs. Hunter[2] cites a number of studies which support the theory. For ethical reasons studies to date have not been carried out on human subjects, however instances where humans have suffered sensory deprivation have been studied and in most cases serious neurological deficits have resulted.

Increased stimulation may therefore result in increased ability and brain size. It causes activation collateral sprouting which in turn absorbs the extra space available and causes a reorganization of the brain's activity.

This process of adaptability is referred to as "re-directing the call" and Hunter uses the analogy of making a telephone call. In this article ComaCARE redirects his theory to include South Africa…..For many years the caller has been used to picking up the phone and dialling direct to Johannesburg. One day the direct dialling system does not work, so the caller goes to the operator to make the connection. The operator also has difficulty making the connection but eventually achieves it via Perth, Hong Kong and Frankfurt. Obviously this takes more time and is more expensive than direct dialling. The caller later finds out that the direct line with Johannesburg will never work again, so that to call London it will have to be via Perth, Hong Kong and Frankfurt. With time, this more cumbersome method of making the call becomes efficient.
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COMA AROUSAL APPROACH
This arousal practice explained is not ComaCARE’s response to the crisis of coma in the family. ComaCARE does not deny that in some instances this treatment has been successful, but looks for a gentler way of working with the client and a less time consuming one for the family. With training in coma communication work, carers practicing Coma Arousal could help clients go further with their awareness while reacting to stimuli.

The basis of coma arousal therapy lies in the frequency, intensity and duration of environmental stimuli that the patient receives. Stimuli may be via the five senses (vision, hearing, touch, taste and smell) by which the brain receives information about the outside world plus physical movement. Sensory stimuli are essential factors in stimulating the reticular activating system (RAS), the consciousness control centre, to maintain consciousness.

Basically, any comatose patient in a stable medical condition is considered a suitable subject for a coma arousal programme. Coma often results from head trauma sustained in motor vehicle accidents and it is this category of patient most commonly found in coma arousal programmes.

Patient assessment is essential prior to commencement of the programme. Although it is relatively easy to assess the physiological state, it is difficult to measure the degree of brain function. The Glasgow Coma Scale (GCS) enables a uniform approach to assessing severe brain injury, but its value is questionable once the patient is scoring above 9; a score of 8 or less out of a total of 15 is usually considered to indicate coma.

Coma arousal therapy usually commences as soon as possible after the development of coma and may start in the intensive care unit providing the person’s medical condition is stable. As will be seen, coma arousal programmes are very labour intensive and it has been suggested that the best therapists are those who are interested and caring - frequently relatives, partners or friends.
In addition, those closest to the person are more likely to notice and receive a response.

The pupillary reflex is the lowest level of visual function, although this reflex may not be initiated in the coma patient, it does not necessarily indicate absence of any visual function. It is proposed that a light source sufficient to achieve a response (constrict the pupil) may be in the order of 150 watts. ( It is often higher than this).

Having achieved pupil constriction the visual stimulus is changed to include, for example, the use of strobe and flashing lights. Once the patient's eyes remain open flash cards are used. These usually have words or pictures printed on them and should indicate a clear contrast - for example red writing on a yellow background. They are accompanied by a verbal indication of what is printed. In addition, different shapes and colours are introduced.

The startle reflex is the lowest level of auditory function and as with visual stimulation, the type of response is dependent on the intensity of the stimulus. Noises that might cause conscious people to startle will not stimulate the comatose. Therefore very loud noises (such as banging two saucepans together, ringing a bell or blowing a loud whistle directly near the patient) are used to achieve a response. These noise stimuli are irregular as the brain has the ability to "turn-off" continual sound.

The third sensory modality, touch, can be achieved by deep pressure massage, pinching and slapping, and use of a vibrator, loofah sponge and brushes are also suggested. Whatever type of tactile stimulus is used it is important that it be "rough" as the intensity of the stimulus is the important factor in gaining a response.

Facial grimacing is believed to be an indicator that the taste sense is working. It is suggested that there should be use of such substances as vinegar, lemon juice, mustard, soy sauce, chilli and salt as an intensive or noxious stimuli. Caution should is employed if the patient has an endotracheal or tracheostomy tube.

Therapy is thus usually given by relatives or significant others who have been educated in the process. Professional therapists who have been involved in coma arousal programs emphasize the very positive effects of such involvement for the relatives. They report that it gives people a sense of purpose, enabling them to channel their efforts and feelings into positive activities.
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COMA AROUSAL IN PRACTICE
In this section ComaCARE provides a synopsis of a coma recovery programme Instituted by the International Coma Recovery Institute(ICRI). To fully appreciate the work of this institute go to links.
The International Coma Recovery Institute has a liberal policy in terms of prognosis before admission to their programme. In fact, for almost all patients accepted into this program, the medical 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 and has had successes.
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Description of a programme
The ICRI programme is different from most other coma recovery programmes 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 programme 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.

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 multi-sensory 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. 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. Go to Table 2.

As the word multi-sensory 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.

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

The family members practice going through the stimulation programme 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 programme 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 programme 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 programme.
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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 programme's implementation. Sometimes family members themselves teach the nurses how to carry out the intense multi-sensory and physical stimulation programme. Physical therapists and speech therapists are consulted as necessary.
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Nursing patients in a coma program
Nurses working in coma recovery programmes 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.

Nurses who work with coma patients in acute-care settings would do well to investigate various coma recovery programmes 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 energetic and who want to be involved in the care of their loved one, if not totally responsible for it.
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COMA AROUSAL ASSUMPTIONS AND CONSTRAINTS
The difficulties of this programme for South Africa may include:

Initial high cost in a specialized or tertiary institution.
Heavy labour requirements (the regularity and intensity of the intervention) from family members who are already overburdened with daily life survival mechanisms.
Suitable home environments where there may be no easy access to water, sanitation, electricity etc.
The potential for carer burnout. where there are single headed households and more than one family member could be suffering from an illness such as T.B. and HIV/AIDS.
Also, The assumption that coma is an undesirable state from which a patient must be forcibly extracted is not questioned in many of the arousal programmes, despite many accounts of coma patients explaining the deep and meaningful nature of their coma state which subsequently changed their lives.

It is ComaCARE’s observation that clients often need support to go further with their inner states and complete them, before gaining more consciousness in consensus (day to day) reality. It would be hoped that exploring less intrusive methods could support the patient’s own processes and rights.
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Table 1. Multisensory Program Components (Sample) (Low-Level)

Function	Type	Method	Frequency of administration	Method of evaluation

Visual	Bright light	On/off for 1 sec for 10 sec	q hr x 11 hrs	Pupillary reaction, initiation of eye blink or movement of head
Auditory	Simple, loud sound next to ear	Clap 2 pieces metal or wood next to L ear, R ear	3 x per hour x 11 hours	Patient initiates blink or head turning briskly upon auditory stimulation or startle reflex
Olfactory	Ammonia	5 sec. under each nostril	q hr x 11 hrs	Tearing, facial flush, breath holding, withdrawal
Taste	Tabasco sauce	1 drop on tongue	1 x per hour x 11 hours	Diaphoresis, facial flush, spitting, swallowing
Light touch	Feather or sponge	Down limbs-first one side, then the other	q hr x 11 hrs	Continued until patient can give verbal response
Pressure	Increased pressure against muscles	Down limbs-first one side, then the other	q hr x 11 hrs	Continued until patient can give verbal response
Pain	Pressure to TMJ; trapezius muscle; fingernail beds	Up to 5 sec.	q hr x 11 hrs	Withdrawal
Range of motion	Range of motion	ROM to all joints	Approx. 150 ranges of each joint per day	Degree of range patient participation
	Alternating movements	Arms raised alternately; legs raised alternately	15 x per hour x 11 hours	Degree of range patient participation