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According to rough estimates by the German Federal Association for Traumatic Brain Injury Patients in Need, around 40,000 people in Germany fall into a deep coma each year due to severe traumatic brain injuries. About 20,000 of them then remain in what is known as apallic syndrome or vegetative state, often for months, sometimes even years. The rest either wake up immediately or die.
Stuck between two worlds
The brain stem regulates the basic functions of the body, such as breathing, swallowing, and circulation. The midbrain, which is part of the brain stem, transmits information from the spinal cord to the cerebrum. This is where our consciousness resides. It processes all the sensory impressions that add up to our perception. In a persistent vegetative state, the transmission of information from the midbrain is usually impaired. Often the brain stem and cerebrum are also damaged.
Patients in a vegetative state have a normal life expectancy. But no one knows whether and when they will emerge from the depths of consciousness. The occasional dramatic reports of people who are said to have awakened from a vegetative state after years are controversial and considered unlikely by experts: Was it really a vegetative state, or just a lesser form of impaired consciousness?
On the brink of death
There are few reports of people who have come out of a vegetative state. The majority have no memory of what happened to them. The accounts of those who do remember are similar to near-death experiences. They all saw a white light at the end of a tunnel. Furthermore, they saw their lives flash before their mind’s eye. There are many levels of consciousness between life and death. Only a few have been explored.
Doctors can now check which “sensory channels” are active in the brain. Can patients in a vegetative state hear, see, feel, smell and taste? One of the tools they use to answer this question is electroencephalography (EEG).
The misdiagnosis rate is high
What if a patient is deaf and blind and therefore unresponsive? There is no clear diagnosis of whether a person is in a vegetative state or simply trapped in their body but completely lucid. On the contrary, the misdiagnosis rate is 40 percent. Even today. The reason is often a lack of examinations because not all clinics have the latest and most modern examination equipment and methods at their disposal.
Unfortunately, patients with traumatic brain injury, including those in a vegetative state, are a marginalized group of patients. While a person is in a vegetative state, which can last for months or even years, their care and support situation, as well as their financial security, is completely unclear. Anyone whose costs are not covered by employer’s liability insurance, the other party’s insurance in the event of an accident, large savings or social security will find themselves underinsured.
After unsuccessful early rehabilitation, most of those affected have no choice but to care for the coma patient themselves at home because health insurance companies no longer declare themselves responsible for patients suffering from apallic syndrome / persistent vegetative state.
According to the Federal Association for Traumatic Brain Injury Patients in Need, relatives are often dismissed with the words: “The patient has exhausted all treatment options. Unfortunately, there is no more hope.” But who knows, maybe life in a world between life and death is much more beautiful than we could ever imagine. And perhaps scientists will soon be able to shed light on it.
