Australasian Science: Australia's authority on science since 1938

Locked-in’s Challenge to Autonomy

By Michael Cook

Four patients with locked-in syndrome have communicated that they are happy as long as they receive adequate care at home.

The full text of this article can be purchased from Informit.

The craze for Marvel superheroes encourages us to think that merely being human is too easy. We need to exceed our limitations by adding superpowers – breathing underwater, eternal youth, colossal strength, regeneration, flying, spinning spider webs and so on. Of course, that’s just comic book stuff, but the same dynamic is at work in the Olympic goal of going “faster, higher, stronger”.

It’s a facet of the homage we pay to “autonomy”, the key value of contemporary bioethics. If our autonomy is diminished, we are diminished as human beings. Our happiness is deemed to be proportionate to our autonomy.

But medicine offers the competing narrative that less might sometimes be more.

Nothing illustrates this better than that rare condition, locked-in syndrome (LIS). Most people first learned of it after reading the international bestseller The Diving Bell and the Butterfly, or watching the film of the same name.

Jean-Dominique Bauby, the editor of the French edition of Elle, suffered a massive brain stem stroke while driving. When he woke up he was completely paralysed, apart from the upper eyelid of his left eye. Yet within 2 years he had written his book, which exudes a remarkable joie de vivre. He composed it by blinking when an assistant said a letter. Even in translation his prose was dazzling:

[M]y mind takes flight like a...

The full text of this article can be purchased from Informit.