Monday, November 23, 2009

Quote-Unquote-Coma: A Wrench in Aid in Dying Argument?

This is the kind of story that opponents of patients' rights love to glom onto:

A car crash victim diagnosed as being in a coma for the past 23 years has been conscious the whole time.
Rom Houben was paralysed but had no way of letting doctors know that he could hear every word they were saying.

'I dreamed myself away,' said Mr Houben, now 46, who doctors thought was in a persistent vegatative state.

He added: 'I screamed, but there was nothing to hear.'

Mr Houben described the moment as 'my second birth'. Therapy has since allowed him to tap out messages on a computer screen.

Mr Houben said: 'All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt.'

His case has only just been revealed in a scientific paper released by the man who 'saved' him, top neurological expert Dr Steven Laureys.

'Medical advances caught up with him,' said Dr Laureys, who believes there may be many similar cases of false comas around the world.

The disclosure will also renew the right-to-die debate over whether people in comas are truly unconscious.

Mr Houben, a former martial arts enthusiast, was paralysed in 1983.

Doctors in Zolder, Belgium, used the internationally accepted Glasgow Coma Scale to assess his eye, verbal and motor responses. But each time he was graded incorrectly.

Only a re-evaluation of his case at the University of Liege discovered that he had lost control of his body but was still fully aware of what was happening.

He is never likely to leave hospital, but as well as his computer he now has a special device above his bed which lets him read books while lying down.

Mr Houben said: 'I shall never forget the day when they discovered what was truly wrong with me - it was my second birth.

'I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead.'

Dr Laureys's new study claims that patients classed as in a vegetative state are often misdiagnosed.

'Anyone who bears the stamp of "unconscious" just one time hardly ever gets rid of it again,' he said.

The doctor, who leads the Coma Science Group and Department of Neurology at Liege University Hospital, found Mr Houben's brain was still working by using state-of-the-art imaging.

He plans to use the case to highlight what he considers may be similar examples around the world.

Dr Laureys said: 'In Germany alone each year some 100,000 people suffer from severe traumatic brain injury.

'About 20,000 are followed by a coma of three weeks or longer. Some of them die, others regain health.

'But an estimated 3,000 to 5,000 people a year remain trapped in an intermediate stage - they go on living without ever coming back again.'

Supporters of euthanasia and assisted suicide argue that people who have lain in persistent vegetative states for years should be given the opportunity to have crucial medical support withdrawn because of the 'indignity' of their condition.

But there have been several cases in which people judged to be in vegetative states or deep comas have recovered.

Two things here: We have the technology now to determine the brain activity of patients in unconscious states. A few miraculous cases, however, don't represent the nature of all cases. The argument presented after the presentation of a case like this is, "See! Miracles happen." I would argue that a science-based and fact-based approach to treatment of "unconscious," persistent vegetative state, "coma" patients. Let's continue the technological advancements that teach us more about these patients.

But let's use science and fact - what has revealed Mr. Houben's fortunate state - and not vilify families that have the most difficult decisions to make when their loved ones fall into unconscious states after terrible trauma. Without patient directives, family members and doctors are put into the most emotionally difficult situations. False hope is a tragedy. Miracles are wonderful and very, very rare.

As well, it is important to remember what the Death with Dignity bills say, only because many "pro-life" advocates tend to confuse removal from artificial life support with aid in dying. Death with Dignity is a dying patient determining, under strict regulation and doctor consultation, how they die.

I am overjoyed for Mr. Houben and his family. But one miracle does not a prognosis make. False hope and futile care should be countered by fact-based, science-based decision-making. For the sake of the patient and their family.

Update: That didn't take long. Terri Schiavo was killed and Mr. Houben's case proves it.

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