After years of deep therapeutic pessimism, emerging therapies offer hope for patients trapped between coma and wakefulness
The first time I saw Valerie (not her real name) she was lying on a hospital bed completely still, staring at the ceiling. She didn’t react as we entered her room. I looked at her parents standing next to her, their eyes full of hope and despair. She was so young; her life was supposed to be ahead of her, but a dramatic car accident had put all their lives on pause.
My colleagues and I evaluated her by her bedside every day for a week. We were trying desperately to detect any signs, any tiny responses, that would mean she was still there – that she could hear what we were saying; that she could feel the immense love her parents had for her. But each day, nothing.
Although the evaluations were inconclusive, there was still some hope. Using cutting-edge neuroimaging scanners and software, we had the ability to detect if Valerie, though otherwise completely incapacitated, could nonetheless listen to our instructions and so activate a specific area of her brain upon request.
Valerie’s parents waited several agonising days as we conducted these complex analyses. Finally it happened – Valerie showed some residual brain activity that suggested she could (partially) hear and understand some of our instructions. It felt like a breakthrough, but what did it mean for her? Would she continue to improve? What did she really feel? Could she understand everything we said? Would she ever be able to walk or speak again?
Answering the first question about her brain activity just led to so many more questions. That day, I decided that, even if it was an enormous challenge, I wanted to work on the development of new treatments to help patients such as Valerie recover, even a little bit.
I started working at the Coma Science Group at the University of Liège in Belgium. Our aim is to understand the neural correlates of (un)consciousness by studying patients with severe brain damage who have emerged from coma.
Thanks to the development of advanced resuscitation techniques and related advances in intensive-care treatment, in rare cases patients with severe acquired brain injury can survive even after being in a coma, yet they remain in a condition called ‘unresponsive wakefulness syndrome’ (previously known as persistent vegetative state) – that is, apparently awake but without any awareness. Or, if it’s believed they have some residual awareness, they’re said to be in a ‘minimally conscious state’. These conditions are known collectively as ‘disorders of consciousness’ (DoC).
While medical progress has undoubtedly helped to save lives, it has also created mysterious states of limbo. For example, in cases of unresponsive wakefulness syndrome, patients open their eyes but don’t express any purposeful behaviours. In a minimally conscious state, patients are almost entirely incapacitated, and yet they’re able, for instance, to track moving objects with their gaze, answer simple commands to move their feet, or squeeze someone’s hand.