快猫短视频

Your work concerns the tough questions raised when brain injuries affect consciousness. Why is this issue so important to you?
We have only recently come to realise that a subset of people diagnosed as being in a vegetative state were not vegetative at all. They were not permanently unconscious; in fact, they were conscious. We now know this as the minimally conscious state. It struck me as a human rights issue, that these people who had the ability to interact and be aware at some level were sequestered in nursing homes.

So in your book, Rights Come to Mind, you decided to tell their stories
I interviewed more than 50 families of people who had come to Cornell and Rockefeller for our studies on how the brain recovers from disorders of consciousness. I felt a tremendous moral obligation to give a voice to these voiceless people and their families who were struggling, often in isolation and overwhelmed by grief.

Much of the book is about how families make decisions as surrogates about what they think is right. In some ways, it is easier to make decisions about someone who is completely unconscious. When someone is there and able to interact at some level, even minimally so, there鈥檚 a tremendous amount of ambiguity.

You illustrate these dilemmas with the story of Maggie Worthen. Tell me about her
Maggie was a senior in college when a brainstem stroke left her in what was thought to be a permanent vegetative state. Two years later, her mother sought us out, wanting to find out if Maggie had some awareness. We were able to demonstrate behaviourally, and then with neuroimaging, that she was indeed minimally conscious.

鈥淚 felt a tremendous moral obligation to give a voice to these voiceless people鈥�

We found that Maggie was able to respond using one eye, much like Jean-Dominique Bauby, author of The Diving Bell and the Butterfly, who had locked-in syndrome. One time, my colleague Nicholas Schiff pointed to Maggie鈥檚 mother and asked 鈥淚s that your mother?鈥� There was this long pause, and then this downward swoop of Maggie鈥檚 eye 鈥� which meant 鈥測es鈥�. Then Maggie鈥檚 mother started sobbing on my shoulder. That was a pivotal moment because it validated what she thought she had seen in her daughter鈥檚 responsiveness.

We鈥檝e known about the minimally conscious state since 2002. Why is misdiagnosis still a problem?

The challenge with the minimally conscious state is that the behavioural manifestations are intermittent, so cannot always be reproduced. That makes it complicated to identify and the misdiagnosis rate is high. One study showed that 41 per cent of people with traumatic brain injuries in nursing homes diagnosed as vegetative were actually minimally conscious.

I argue that we have to prepare society for the consequences of advances in neuroscience which will expose us to new problems, but also give us opportunities to find new solutions.

What kinds of scientific advances are changing the picture?
Neuroimaging can help us find out if these people are responsive and conscious. Neuroscience has made us aware of this situation, and may also help to deal with it, through neuroprosthetics, deep brain stimulation, other devices and drugs. But fundamentally, it鈥檚 a societal issue because now we have people we treat who deserve more than we have traditionally given them.

What was it like being part of the first team to try deep brain stimulation to help improve the consciousness of people with brain injuries?
That work started through my collaboration with Nicholas Schiff, who is at Weill Cornell with me. We were interested in the disconnect between what you see overtly and what is going on internally. He had this idea of using deep brain stimulation to help restore functional communication in the minimally conscious state.

That presented a huge ethical challenge: how do you do research on someone who can鈥檛 give consent? I spent the better part of 10 years working on the ethical formulation that would make such work possible. That project was published in Nature in 2007. We found that . A subject in the trial was in a minimally conscious state after being assaulted, and through this procedure gained enough coordination to eat by mouth.

You talk about these issues in a very hopeful way, but many of the experiences of people in your book are pretty awful
Let me just preface this by saying that I鈥檓 not trying to romanticise these brain states. Nobody would choose to be this way. But after a brain injury, families first hope their loved one will survive and wake up. Then they hope that when they wake up they鈥檙e conscious. Then they hope that when they鈥檙e conscious they鈥檙e more than minimally conscious 鈥� but then they end up in a place they didn鈥檛 necessarily expect to reach. We are not trying to romanticise this brain state. We鈥檙e trying to help these people regain as much functional capacity as they can.

There鈥檚 a subset of patients who can and will get better if identified and properly treated. A recent study showed that 22 per cent of people with a disorder of consciousness will recover enough to live independently. Most people are staggered when they hear that number.

What is the paradox you talk about between care people get at the start of treatment and later on?
People who have traumatic brain injuries initially receive brilliant medical care that saves their life. But one of the paradoxes around the misdiagnosis rate of a minimally conscious state is that after a traumatic brain injury, people often end up in chronic care facilities because they鈥檙e not considered ready for rehabilitation. But once there, they often don鈥檛 come back.

So you鈥檙e saying the chance to improve their condition is missed?
Yes. Somebody may be in the vegetative state when they鈥檙e discharged from hospital. They might end up in a nursing home and then start exhibiting responsive behaviours that are intermittent; a doctor is called but they are not reproduced. If the doctor doesn鈥檛 know about this new science, they might ascribe it to family denial when it鈥檚 actually the biology of the minimally conscious state.

I describe cases like this in the book. Terry Wallis, for example, started talking 19 years after his injury. His family thought they saw things throughout that time, but it wasn鈥檛 until he emerged from the minimally conscious state and started talking that people appreciated he had been minimally conscious for most of those 19 years.

Can people who recover help change perceptions of what it鈥檚 like to live with these kinds of brain injury?
The problem is that the people who were minimally conscious don鈥檛 remember that time. Everybody wants to know what they were thinking. But they don鈥檛 remember because the hippocampus, where memory resides, is one of the most exquisitely sensitive parts of the brain to injury and other kinds of trauma 鈥� so they don鈥檛 have a recollection. But their stories are becoming exemplars of why we should be worried.

(Image: Martin Adolfsson)

This article appeared in print under the headline 鈥淪how me you are there鈥�