In a waking coma or apallic syndrome, the affected person cannot eat, cannot drink, and has little to no communication. Still, they sleep and some respond to stimuli. However, many never fully awaken from their twilight sleep. Eyes open, facial expressions frozen in a mixture of astonishment and disinterest, unable to move or make any contact with the outside world: Patients in a persistent vegetative state are less than the shadow of themselves. “Apallic syndrome” is what medical professionals call this state between deep unconsciousness (coma) and conscious wakefulness, as experienced by healthy people. Around 3,000 to 5,000 people in Germany fall into a coma every year. Some manage to fight their way back into the waking world. An estimated 12,000 permanently doze off.
Death by food deprivation
In the U.S., for example, a patient was deprived of food after many years in a vegetative state, resulting in her death sentence. She was struggling, the husband says. She was not really in a bad way, the parents affirm. But no one will really know who is right. Because no one can say for sure whether and what is really going on in the consciousness of a coma patient.
Causes of a waking coma
Causes of apallic syndrome are often accidents in which the brain was injured. A person can also enter a persistent vegetative state due to an undersupply of oxygen to the brain – for example, due to an anesthetic incident or after resuscitation following a prolonged cardiac arrest. Often, the waking coma follows a real coma. However, it is not really possible to talk about awakening. These patients breathe without mechanical assistance. Their sleep-wake rhythm is also present. However, they are unable to eat or drink and therefore must be fed artificially.
Term “waking coma” is misleading
Many medical professionals object to the term “waking coma” because it is a contradiction in terms. The word coma comes from the Greek and means deep unconsciousness. “Minimally conscious state”: the state of minimally possible consciousness – the English language term – seems more accurate. This is because many patients with the clinical picture of apallic syndrome react to stimuli from their environment. In some cases, brain wave measurements can also show whether the reaction, for example when the eyes follow a finger, is purely a reflex or whether the patient can process external stimuli in the cerebral cortex, the center of consciousness and thought. In healthy individuals, sentences without meaning in the brain produce a specific pattern on the EEG (electroencephalogram, the recording of brain waves). Such waves can also be measured in some patients in a vegetative state.
Glasgow Coma Scale
Consequently, there is no such thing as “the” waking coma, but rather a variety of different levels of consciousness in which a person may be. How far a person has drifted from his or her conscious self is indicated by the numbers on a scale called the “Glasgow Coma Scale.” Here, the doctor assesses certain clues such as the ability to consciously perform movements or make oneself understood verbally. A GCS score of 3 means that the person is in a deep coma, does not react to anything and cannot react on his or her own. A GCS score of 15 corresponds to a healthy, alert person.
Locked-In Syndrome
A special case that still needs to be distinguished from persistent vegetative state is the so-called locked-in syndrome: people with this clinical picture, like coma patients, can neither move nor speak, yet their conscious self is completely intact: for example, Karl-Heinz Pandtke, a patient from Berlin, consciously witnessed emergency doctors pronouncing him dead after a stroke that affected his cerebellum. He was unable to speak or even blink during this. He was a prisoner in his own body. Our consciousness lies in the cerebral cortex: this is where we think and feel, this is where our personality lies broken down into different areas and brain windings. The brain stem, the “oldest” part of our central nervous system (CNS), which developed much, much earlier in our evolution, controls life support: breathing, sleep rhythm, reflexes. If the cerebrum is damaged, but the brain stem remains functional, an apallic syndrome is present. The patient is in a waking coma. In locked-in syndrome, the cerebrum, i.e., consciousness, is not affected.However, the cerebrum is deprived of any controls over the body; outwardly, this state is very similar to coma or waking coma. Often, patients with locked-in are not recognized as such and must persevere in an immobilized body while their minds are awake.
Rehabilitation in a persistent vegetative state
The sooner a patient can begin rehabilitation, the greater the chances of recovery or at least improvement in condition. The more comprehensive the care, the better. Relatives should talk a lot with patients, help with care, and be shown how to properly interact with the coma or awake patient. Even small signals such as raising an eyebrow or twitching a finger can be the first signs that consciousness is returning. However, months often pass before the first signs of success become apparent. The rehabilitation and care of a patient in a persistent vegetative state costs thousands of euros per month. Many health insurance companies only pay up to a certain point, depriving many people of the opportunity to make further progress back toward normality.
Burden on family members
But it is not only financially that much is demanded of relatives. Caring for a loved one who has fallen into such a helpless situation is an enormous nervous and often physical strain, especially when care is provided at home. In self-help groups and at counseling centers, they can find help and talk to others who are affected. Schädel-Hirnpatienten in Not e.V. even offers an emergency telephone.
