LIÈGE – On the wooded hills overlooking the Meuse River sits the University Hospital, a huge mountain of concrete built in this Belgium city in the 1980s. The intensive care unit is on the first floor of the 1000-bed institution.
“Mia, how are you doing today? Should I put on some of that classical music you like so much?” Steven Laureys asks a patient.
When she was brought in, the 65-year-old had a brain hemorrhage, and was in a coma. A whole week went by without the doctors knowing exactly what her condition was. Then she opened her eyes, and within a few days was able to communicate: lifting her right arm a little and nodding her head for “yes,” although shaking her head for “no” is still difficult.
Neurologist Steven Laureys, who at 43 is considered one of Europe’s top coma specialists, is happy. Together with his 35-member Coma Science Group of neurologists, engineers and mathematicians, he has proven that four out of ten coma patients are wrongly diagnosed: these patients, who are supposedly “in a vegetative state,” are to some degree conscious.
The University Hospital in Liège and London’s Wellington Hospital are the two best institutions in Europe for treating coma patients, and if, following a ski accident three weeks ago, comatose Dutch Prince Friso was brought to London and not Liège for care it is because that’s where he and his family live.
Tens of thousands of people in Germany have relatives or friends suffering from apallic syndrome (persistent vegetative state) or a “waking coma.” In Germany alone, it is estimated that there are currently at least 5,000 people in a waking coma in hospitals, nursing homes or being cared for at home.
Of long tests and false hopes
In Belgium, Laureys’s waiting list is long. The tests given to new patients – some are Belgian, others come in from abroad — are so time-consuming that he and his team can’t examine more than three a week.
“It’s difficult to define what a coma actually is,” Laureys says, adding that each case requires a week-worth of tests, including magnetic resonance imaging (MRI) and positron emission tomography (PET scans) to determine what areas of the brain are functioning. The brain’s electrical activity and reflexes are also measured. Many coma patients suffer from spasms which can render some of the testing particularly difficult, as they require the patients to lie perfectly still.
Laureys also uses special techniques that show that some patients considered to be in vegetative state are in fact reactive. These include questions to which patients are taught some way of answering yes or no.
The best-known of these patients is a Belgian man named Rom Houben. For 23 years, he lay in a nursing home, written off as having no consciousness. Laureys showed that he did, and taught him how to answer yes and no to questions by pushing a foot pedal.
At the Liège hospital, ten days after their loved ones are brought in for tests, relatives wait on four white plastic chairs to hear the results. In Belgium, if the state of a coma patient doesn’t improve within three months, according to the law, relatives must then make a decision about what kind of life-support the patient should receive.
Although Laureys and his team can establish if a patient still possesses some consciousness or not, it’s important not to raise false hopes. “Whatever the patient’s condition is, he or she will never be the person they once were,” he says.
Nevertheless, these patients can go on living for years and sometime decades. And it’s up to relatives to decide what exactly is a “life worth living,” unless the patient has left a living will prior to falling into a coma. “It’s so difficult,” says Laureys, “because no matter what they decide, the decision is always based in love.”
For patients whose coma is recent, like Dutch Prince Friso, there is more hope, explains Laureys. The longer they are comatose, the lower the chances of recovery.
Read the original article in German
Photo – Rodrigo Basaure