My life and my thoughts - on faith, culture, politics, whatever comes to my mind

Thursday, March 24, 2005

Rehabilitation for „waking coma“ patients

A friend of mine sent me this link (in German) as she knows that I’m concerned with Terri’ s situation and the life of people in similar conditions. Now, let me get this clear: I do not want to imply that Terri is in a waking coma, nor that she is not. I think waking coma (literal translation from German) might be what in English is called the vegetative state. I am a lay person concerning medicine, so I cannot evaluate CTs etc. But I care about people where many others – as we see now – would say they are “better off dead” (see Dory quoting a soccer mom in this post at the Wittenberg Gate). So I want to know more about those illnesses and conditions and how they effect the people suffering from them and if rehabilitation is possible. I guess quite some of you are interested in this too, so I will summarize the contents of the German link here (I beg pardon if some things will sound strange, sometimes translating isn’t that easy...). The source is a good German radio and TV station. And this post does not claim having all information about waking coma!

First: what is a waking coma?
The patients are unconscious, but their eyes are open and they have a waking-sleeping rhythm. They breathe by themselves, are able to feel pain and show physical reactions though they are unable to communicate with their surroundings. There are no prognoses if they will awake from this condition or not. Some do and heal almost completely, others stay severely disabled for the rest of their lives. What really surprised me: alone in Germany there are 12 000 (!) people in a waking coma.
What happened in their body and what does still work?
Those people suffer from raised brain pressure. The middle part of the brain – that controls being awake – gets damaged. The communication with the part of the brain responsible for communication and memory etc., the cerebrum, is disturbed. Therefore those people are called “Appaliker” (comes from the Greek and means more or less people without a cerebrum). BUT those people are not brain dead or unreachable. Different from brain death, their brain functions are only partly not working. They can hear, smell, see and even feel. But the cerebrum cannot put all the information together anymore.
Are changes to their condition possible?
Yes, they are. But the likelihood is low after four to six months.
Now: is rehabilitation possible?
Yes it is, but it is very slow and does not necessarily mean full recovery. According to the radio station's information a study by the neurologist Dr. Keith Andrews (Royal Hospital for Neurodisability, London) in 1994 showed that 22 of 43 waking coma patients could be released to living at home after rehabilitation in a special facility in London. (I tried to find the study, but haven't succeeded yet, he has published other interesting articles about the so-called vegatative state though.)
The first German rehabilitation center for waking coma patients was founded in 1989 in southern Germany. The basis is that communication with the patients is possible and that their condition will improve if they can participate in life. They need treatment by among others speech therapists, physical therapists and neurologists.
They especially use basal stimulation (I hope this is the right term!). Patients get stimuli from different sources starting on a “basal” level which means that those stimuli are easy and do not need prior knowledge or experience. This is the basis for “advanced” perception.

Have a look at the link above and take a good look at the accompanying photos. The 17-year-old girl is in a waking coma. From just looking at her, it is so easy to think that she does not perceive anything around her. It is so easy to say: Nobody would want to live like that! But then take the information above into account. All those things she can still "do". She most likely enjoys. And the (even if it is only small) possibility that she might recover, at least in part. Who are we outsiders to judge her life as unlivable, even if we have the best motives? This is not the brain dead person whose life depends on life support machines like the one keeping the lungs and the heart going. In cases like hers, the decision, in my opinion, should be for hope and for life.