Tuesday, November 24, 2009

Brain, coma, vegetative state and misdiagnosis.



This is a truly appalling story about a Belgian man who after a car accident fell (as doctors thought) into a coma and then had been diagnosed as being in a vegetative state. The accident occurred more than 20 years ago, and the man claims that while during the whole time he was fully aware of what was happening around him in the hospital, he could not respond or even cry out, because he was paralysed. It was recommended that the family would let him die. Fortunately, they refused to accept the diagnosis and continued to fight for him all these years. His mother, who was always convinced that he was conscious, took him to the USA five times (!) to perform medical tests. About three years ago, they finally got in touch with Professor Steven Laureys of Belgium's Coma Science Institute. Laureys conducted a specialized PET scan that was not available in the 80th, and the scan determined that the patient was conscious. The neurologist who worked with him said they saw in the scan that his brain was “almost normal”. They attempted to establish some communication with the patient, and finally he managed to move his foot slightly to stir a computer device to indicate yes or no. Then they attached a special touch-screen to his wheelchair and he started to communicate extensively. Since then he had been diagnosed with a “locked-in syndrome”, a condition in which a person cannot move or speak, but is able to think and reason. While mentally, he appears to be absolutely normal, (he has just started writing a book about his experience), doctors think that his physical condition is unlikely to improve. However, his mother refuses to give up. She says, “We continue to search and search. For 26 years already”


I cannot imagine what this unfortunate individual was going through. To be able to feel, think, meditate, hear, see, understand, reflect, but not to move, respond, speak or even cry- for 23 years- this is inconceivable. During that time, the patient’s father had died and he heard the sad news in the hospital, but could not respond or show any emotion. I am not sure that it can be called a “happy ending”, but at least due to the heroic and perhaps superhuman efforts of his mother the man is still alive today. However, reading this report I could not help remembering the heartbreaking case of Terry Schiavo. She was a young and successful Florida woman, who after experiencing cardiac arrest in 1990 resulting in extensive brain damage was diagnosed as being in persistent vegetative state. She spent almost 15 years in a hospital, on life support, unable to speak, reason, feed herself and so on. Several years later, her former husband filed a petition to remove her feeding tube, which her parents surely opposed. That is how their prolonged legal battle started. I lived in the USA at that time, and witnessed the end of this story, when in the beginning of 2005, the final decision was made to remove her feeding tube. While she was dying, it appeared that the entire country was involved in the case, from the ordinary citizens to the Governor of Florida (a brother of President Bush), the United States Congress and the President himself. However, nothing worked, court decision could not be overturned, and Terry was allowed to die. After her death, the autopsy confirmed that her brain was extensively damaged in all regions, and it weighed only 615 g, as a result of the loss of a massive amount of neurons. Nonetheless, I still cannot get rid of the feeling that something was wrong. There was a lot of publicity around this case, and I watched a video of Terry with her mother in the hospital. It appeared that Terry responded to her mother talk with smile, and occasional nods, while her facial expressions were definitely changing. Interestingly, I just reviewed a study published by the same Dr. Laureys who helped the man in this story. The study demonstrated that about 41% of patients in minimally conscious state might be misdiagnosed. The condition of these patients is very often diagnosed as vegetative state, which associated with a much lower chance of recovery. That is what Dr. laureys has to say, "Differentiating the vegetative from the minimally conscious state is often one of the most challenging tasks facing clinicians involved in the care of patients with disorders of consciousness. Misdiagnosis can lead to grave consequences, especially in end-of-life decision-making".

1 comment:

SarahRose Black said...

This story is exceptionally traumatic and intensely emotional to read about- as Leonid said, I cannot even begin to imagine what it felt like to go through the trauma of not being able to express oneself. This article reminded me a lot of Stephen Hawking and his battle with ALS (also known as Lou Gehrig's Disease). One of the most brilliant and creative scientific minds of our time, Stephen Hawking's ability to communicate is based on exterior technology, as his capacity to do so on his own is severely limited. Despite the setback of being a brilliant mind trapped in a failing body, he has gone on to write books, formulate theories and make a remarkable impact on the world.

This article also reminds me of time I spent at Baycrest Hospital observing Amy Clements-Cortes' palliative geriatrics music therapy groups. Many of her clients were extremely low-functioning as far as physical abilities, and most struggled to communicate. The majority of her clients could hardly communicate verbally; however they all managed to communicate in one way or another. Some lightly tapped the tip of their index finger, while others let vocal sounds express their thoughts as Amy was singing. Perhaps they were singing along. It was a beautiful and eye-opening display of the human capacity to communicate without words, and in most cases with little to no physical movement.