Coma Communication and Process-Oriented Facilitation

Coma Communication: We have always gotten responses from the hundreds of people we have worked with. We believe that everyone is trying to communicate. We even consider supposed “reflex reactions” and stiff muscles and tendons as communication patterns that we can relate through. As coma helpers we learn to interact with patients’ nonverbal language and to respond in tune with their communication styles.

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(2) What is coma? And how is it like other states of altered consciousness, such as vegetative state, delirium, stupour, or advanced dementia?

In Western medicine coma is understood as a state like sleep, in which individuals are completely unarousable, and unresponsive to external stimulation and to their own inner needs. So called “true coma” of this nature generally persists for two weeks to a month after traumatic brain injury (TBI). Patients that survive pass into a “vegetative state”, also known as, vigil coma or semi coma. In this state patients usually open and close their eyes and have sleep/ wake cycles.

Delirium, stupour, metabolic coma near death, and advanced dementia are also strong states of altered consciousness. In these states patients are usually more capable of interaction with their outer and inner worlds.

Coma Communication: At Coma Communication we believe that people in coma and other states of altered consciousness are trying to be more aware of potentially meaningful inner experience that they continuously communicate through small cues and nonverbal signals. We teach communication methods for those in altered consciousness, some of of these methods are described in the Resources page.

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(3) What causes coma and altered consciousness?

Coma Communication: At Coma Communication we work with people in coma and altered consciousness resulting from many causes. With all causes we use coma work techniques to communicate with clients, to enable them to complete inner work, reach the outside world when they are ready to, make life and death decisions, and help educate brain and body functions. We believe that as long as there is breath there is consciousness that can be communicated with.

Often a combination of the causes listed below can be in effect.

Traumatic brain injury (TBI) ~ structural damage:
Blows to the head or shaking
Stroke
Cerebral hemorrhage
Tumor, hematoma (blood leaking into brain), hygroma (sack filled with clear fluid in brain or neck), edema (clear fluid swelling in the brain)
Heart attack, suffocation, or near drowning causing lack of blood and/or oxygen to the brain
Anemia causing reduction of hemoglobin to transport oxygen to the brain
Infection including septicemia, meningitis, AIDS, herpes simplex
Seizures

Toxins, poisons:
Alcohol
Narcotics
Drugs
Chemicals

Dementia:
Alzheimer’s disease
Vascular dementia (multiple mini strokes), also known as multiple infarct dementia (MID)
Parkinson’s disease
Huntington’s disease
Lewy body dementia
Creutzfeldt-Jakob disease
Pick’s disease
Frontotemporal dementia

Metabolic changes:
Lack of nutrients
Dehydration
Electrolyte disorders
Acid/base disorders
Carbon monoxide
High blood pressure
Low thyroid hormone
Adrenal insufficiency
Thiamine deficiency, mainly in alcoholic population
Diabetes
Hypoglycemia (low blood sugar) can be due to insulin overdose
Hyperglycemia (high blood sugar)
Kidney malfunction
Liver malfunction

Psychogenic conditions:
Hysteria
Schizophrenia
Catatonia
Depression
Fear

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(4) Can coma be misdiagnosed?

The most common misdiagnosis of coma is blindness coupled with inability to speak. Another is so called “locked in syndrome” in which the person is completely paralyzed, or nearly so, though their mental faculties remain normal. These possibilities should be thoroughly checked.

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(5) Is the coma patient unconscious or asleep?

Coma Communication: We believe that some level of consciousness is present as long as there is breath. And that we can communicate with people in any state of consciousness, including sleep or supposed unconsciousness. People with traumatic brain injury usually remain in a so called true coma for about two weeks to a month, where they have no sleep/wake cycle. They then change to a vigil coma, commonly called vegetative state, where they exhibit sleep/wake cycles, including opening and closing their eyes. The vigil coma is also known as minimal consciousness or severely altered consciousness. Patients in true coma may be more or less aware at any one time of what is happening around their beds. People in vegetative states or altered consciousness are more aware and less aware at times, like all of us. If possible, time your visits for their more aware times of day.

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(6) How long do coma and states of altered consciousness last?

Generally, after traumatic brain injury (TBI), the deepest level of true coma lasts from two to four weeks. If the person does not wake from the coma, they enter a semi comatose state, called vigil coma or vegetative state that include sleep/wake cycles.

With late stage dementia altered consciousness can last until death, with varying, often surprising, periods of greater lucidity.

In metabolic comas near death people may be in and out again of altered consciousness many times for hours, days, or weeks at a stretch.

Coma Communication: A comatose person has the best chance of regaining normal consciousness when coma work is received as quickly as possible. With those suffering traumatic brain injury, brain swelling has to subside before coma work begins, because any excitement may increase brain swelling and endanger the patient.

Brain injury, dementia, and near death states affect every patient differently. Prognosis is difficult to impossible. Coma Communication maintains hope along with a realistic sensory grounded perspective.

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(7) Can a person in coma hear and see?

Coma Communication: Always assume the person in coma can hear. Hearing is usually the last sensory faculty to deteriorate when people are dying. Occasionally someone hard of hearing in their normal state can hear better in their altered consciousness. ~ If you want to speak about sensitive matters, assume your patient can hear, please, leave the room and close the door behind you.

When the coma person’s eyes are open they may well be able to see. Many patients track movements, focus on objects, and make eye contact. They may not do these things all the time, just as you and I don’t.

Speak to the person, sing to the person, encourage them to see what they are seeing especially if their eyes are open or eyelids flutter. Encourage them to hear what they are hearing, and attempt to talk, especially if they are making sounds or if you notice mouth or throat movements. Listen and look for recurring nonverbal signals that indicate positive feedback, and which could be used to set up a binary (yes/no) communication system.

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(8) What about disrupting the person with coma work interventions; shouldn’t I just let them be, especially if they are peaceful?

Coma Communication: People in coma and altered consciousness often fear isolation even more than pain or death. Making respectful loving contact can be a godsend.

When comatose clients are peaceful they may be in states similar to deep meditation, prayer or doing inner work. (see FAQ 10) Sensitive outside prompting and encouragement can be very beneficial to move their awareness process along. So they can complete inner work and potentially come further out of coma momentarily or perhaps longer. You will get subtle positive feedback, such as changes in breathing rate or depth, eyelid fluttering, etc., if you are on the right path.

You won’t disrupt patients if you learn to recognize negative feedback and do not persist beyond three tries at any one communication attempt. Negative feedback is no change in their communication patterns following your interventions.

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(9) How can coma work help patients, families, and caregivers?

Coma Communication: Coma work furthers the internal and external communication of patients in altered consciousness. This can aid patients to complete inner work and spontaneously come closer to the surface, and at times even all the way out of coma or other altered consciousness. With metabolic comas emergence can be quick and dramatic. With coma from traumatic brain injury and other causes progress is usually slow, but measurable. Families and caregivers are often relieved to find ways to communicate with loved ones and clients about treatment options, life and death decisions, and love and personal connection. Family and caregivers often feel validated about their perceptions of subtle cues they have noticed.

Also as a caregiver or friend, please if you are able, take time to listen to the feelings of the family and friends without judgment. They may feel angry, incompetent, bereaved, guilty, overwhelmed, helpless, loving, etc. all at the same time, and may express their feelings in what seem irrational ways. Listen to them in a private place, rather than above the patient lying in bed. Commiserate, companion, and encourage. Suggest professional or pastoral counselling. Refer them to this and other coma work websites and reading materials.

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(10) What goes on inside people when they are in coma processes and other states of altered consciousness?

Coma Communication: From people reporting on their experiences and from outside observations, coma work qualitative research has found these main processes, listed below, occurring or trying to occur within people in coma and other states of altered consciousness:

Titanic battles
Great love stories
Memories
Reactions to the surrounding environment
Spiritual connections
Attempts to connect to the outer world

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(11) How can I tell if the patient is in pain?

Coma Communication: If possible, ask if the person is in physical pain and what they are feeling through binary (yes/no) communication. What may appear as a physical pain signal from the outside could be a different experience on the inside. For instance, tears may be caused by physical pain, an emotional reaction, or spiritual impasse. The tears could be for hurt, joy, anger, frustration, feeling touched, or loved. Please don’t make assumptions but rather support the person by feeding them sensory grounded information. For instance rather than say, "You are crying; you must be hurting." Say, "There is water coming from your eyes." This "fill in the blank" type statement will help the patient with their awareness and at the same time allow them to fill in their own content and gain more awareness about themselves.

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(12) Is it important to be quiet in the room?

Coma Communication: Being overly quiet is not necessarily helpful. It is usually best to speak in your normal voice so patients are sure to hear you, and so you remain as comfortable as possible. That said, follow the mood or atmosphere of the person in coma. On one hand the feeling atmosphere may be quiet and directed toward inner body feelings. On the other hand some exercises require more than one person and may involve a lot of affirmation, encouragement, and even cheer leading at times. ~ If there are too many “noisy” things in the room, like television or radio, it may be helpful to turn them off. Then again, music that elicits positive responses from patients can be beneficial.

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(13) How do I know I am on the right track when interacting with someone in coma and other states of altered consciousness?

Coma Communication: You know you are on the right track when you elicit positive feedback, meaning any immediate response that follows your communication efforts. People on drugs may take a second or two to respond. Positive feedback could come as a deeper breath or a pause in breathing, skin flush, eyelid fluttering, sounds or mouth movements, limb movement, etc.

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(14) How much can I touch the person in coma?

Coma Communication: Touch is almost always beneficial. It is comforting and breaks the sense of isolation of the one in altered consciousness. Please introduce yourself and ask permission first! Tell the person what you are going to do and report as you are touching. For instance, “Now I’m going to touch your right forearm. Here comes. There.” And then notice feedback. All human rights apply to a person in coma. If you try a communication three times and notice no change in the patient, then change to something else or take a break.

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(15) How important is knowing personal history of the person before onset of coma or altered consciousness?

It is useful to gather as much information as possible concerning the person’s physical, mental, and emotional well being before they entered coma. It is important to know these factors because if the person begins to return to everyday consciousness, they may be confronted with these circumstances once again, and they will need help navigating through their life.

Coma Communication: When working with someone in coma or altered consciousness refrain from stressing personal history if you get no positive feedback, because the person may be relating to other things in their altered consciousness state. ~ Sometimes we just do not know the patient’s personal history, so must work only with what is presented in the moment through medical records, sensory grounded signals, and our own intuitive perceptions.

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(16) What resources are available about coma and other states of altered consciousness?

Refer to Resources page for readings and a reading list or visit other places on this website and other websites.

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(17) Is there a living will that recognizes Coma Communication?

Coma Communication: A living will, also known as an advance directive, often contains a declaration that one does not wish to have one’s life prolonged by artificial means. However, once in a coma or state of altered consciousness, we may have a different opinion about our advance directive instructions; many people have life changing experiences in coma while others need time to work through personal, spiritual, family, and relationship concerns. Some people come out of coma and live fully for minutes, months, or years more.

In coma work we apply the principle of the TWO STATE ETHIC – in that we regard seriously a prearranged document, but also appreciate that people may require information about living and dying from another state of consciousness. People change their minds and anyone in a coma also has the basic human right to do so. Click on Living Wills for Coma Communication’s “Coma and Remote State Directive”.

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(18) Which medical tests are used and why?

When someone is in altered consciousness, various tests are utilized to identify the type and location of brain disturbance that has occurred.

Angiogram:
Blood supply to the brain is measured with an angiogram, by X-raying blood vessels after injection with a radioactive isotope.

CT:
A computerized tomography or computerized axial tomography (CAT) scan is a series of X-rays analyzed by computer to give a three dimensional image of the brain.

EEG:
Electrical brain activity is tracked with an electroencephalogram, which also can determine if the person is alert, awake, or asleep.

GSC & RLAS:
The Glasgow Coma Scale and the Rancho Los Amigos Scale use behavioral evaluations, to determine the depth of the altered consciousness.

MRI:
Magnetic resonance imaging reveals physical abnormalities through high quality, cross sectional views of brain tissues.

fMRI:
A functional MRI can demonstrate ongoing brain function levels.

PET:
Positron emission tomography involves acquiring brain images from detection of radiation from the emission of positrons from an injected radioactive substance.

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(19) What are all the machines, and tubes in and around the coma patient?

The machines around the bed are to monitor the patients’ progress and to keep them stable. Please ask the medical staff for further information on what they are and what they do. Some of the more common are:

Arterial line:
A very thin tube, which is attached to a monitor, is inserted into an artery usually in the arm. This allows measurement of the blood pressure and the concentration of oxygen and carbon dioxide in the blood.

Catheter:
This is a flexible tube for withdrawing fluids from or introducing fluids into the body and is frequently used to drain the urinary bladder.

Electrocardiogram (EKG):
This monitors the patient’s heart rate and rhythm. Round electrode pads are located on the chest and are linked to a monitor.

Intracranial pressure (ICP) monitor:
This measures the pressure within the brain and is attached to the patient’s skull.

Intravenous (IV):
Tubing inserted into a vein through which fluids and medications can be given.

Nasogastric tube:
A tube that passes through the patient’s nose and throat and ends in the stomach. This tube allows for direct “tube feeding” and removal of stomach acids, and is used for short term tube feeding.

Percutaneous endoscopic gastrostomy (PEG) tube:
Same function as the nasogastric tube, but directly through the stomach wall, used for long term tube feeding.

Respirator, ventilator:
A machine that does the breathing work for the patient. It delivers humidified air with the appropriate percentage of oxygen at the appropriate rate through an endotracheal tube.

Tracheostomy tube (trache):
A tube inserted into a surgical opening at the front of the throat providing access to the trachea and windpipe to assist in breathing.

Stan Tomandl, MA, PWD ~ Ann Jacob, BA Ed
COMA COMMUNICATION ~ PROCESS ORIENTED FACILITATION
#502--620 View Street, Victoria, BC, Canada V8W 1J6
1.250.383.5677 annstan@islandnet.com www.comacommunication.com

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