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Posted on November 3, 2016 - 3:42pm
Written by Colton Smith
In April 2016 I attended the Symposium on Neuroethics hosted by the State University of New York Downstate Medical Center. Here Neurologists and Neuroscientists discussed emerging neurotechnology and how it’s being implemented. While at this conference I had the pleasure to speak with Dr. Joseph J. Fins. Fins is a physician and the E. William Davis, Jr., M.D. Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College where he is Professor of Medicine, Professor of Medical Ethics in Neurology, Professor of Health Care Policy and Research, and Professor of Medicine in Psychiatry.
Brain scans of various states of consciousness. Image via Laureys S, Owen AM, Schiff ND (2004). "Brain function in coma, vegetative state, and related disorders". The Lancet Neurology 3 (9): 537–546.
Colton Smith- So we’ve been here in Manhattan, New York, for the Symposium on Neuroethics and you just gave a wonderful talk. During your presentation you mentioned that people think that they can outsmart brain injury. What did you mean by that?
Dr. Joseph J. Fins- Somehow we look at people who have these severe brain injuries and we think, “I don’t want to be like that.” Nobody would want to have this kind of thing happen to them or to someone that they love, but the reality is that people find themselves in these circumstances. I think it’s better to look at where these people end up than to present them as not here. I’ve just written a book called Rights Come To Mind, Brain injury, Ethics, and the Struggle for Consciousness and I’ve interviewed over fifty families of patients who’ve come to Weill Cornell, Rockefeller, and CASBI , the Consortium for the Advanced Study of Brain Injury, to understand mechanisms of recovery after severe brain injury. I’ve written this book to try and tell their stories, explain the history of the science, and postulate about what the future might hold. What’s really kind of interesting is that if someone has a severe brain injury, the first thing that the families want is for their loved one to survive.
Smith- Of course.
Fins- And then when they survive, they want them to wake up.
Smith- Right, the family not only wants the person to be living but also conscious.
Fins- They want them to wake up and then they want them to open their eyes. They want those eyes to be open and seeing eyes. Once those eyes are seeing, they want them to recover speech and the ability to interact more fully. Unfortunately, some people get stuck along the way. Their eyes could be open, but they could be unaware. That would put them in what is called the vegetative state. Alternatively, they could sometimes be interactive but not always. That is what is known as the minimally conscious state. One of the problems with brain injury and how we think about illness in general is that we dichotomize the outcome by thinking that people either die or get completely better.
Smith- So there’s a spectrum in brain injury?
Fins- Well most of it is gray-zones in the middle. What I’ve decided to do is devote my work to these people who are somewhere in the middle, the people who are in the minimally conscious state. These are people who look like they are vegetative and for the most part look like they’re unaware, but are actually conscious and aware. And notably, they can feel and perceive pain.
Smith- You mentioned in your talk that the way that we treat these minimally conscious people is borderline scandal. Do you think that these people are forgotten?
Fins- Totally. They’re literally segregated in the chronic care sector after getting brilliant medical care. Few of them get rehabilitation and even that is usually too little and too short. The vast majority end up in chronic care in nursing homes that are ill equipped to meet their medical needs and don’t provide rehabilitation. A recent study showed that up to 41% of patients who’ve had a Traumatic Brain Injury (TBI) and were thought to be vegetative, like Terri Schiavo and Karen Ann Quinlan, were actually minimally conscious. And I should add, Schiavo and Quinlan were permanently vegetative. Their diagnosis is not in doubt.
Smith- So wait, these people in the minimally conscious state (MCS) with TBI are just being pushed into nursing homes even though there is a possibility that they’re actually still awake in their minds?
Fins- Yes. The study showed that 41% of the time we think that they are vegetative they are misdiagnosed and actually in the MCS. The problem is that it’s hard to make the diagnosis because the behaviors that indicate that they are conscious are not displayed all of the time. They’re episodic and intermittent, so they can easily be missed. When a family comes to you and says “Doctor Smith I think Joe is responding when we come into the room” and then you go into the room and the patient doesn’t respond, you would chalk up what the family says to denial, that it never happened. But that’s the biology of the minimally conscious state. They only do some things some of the time. The biology of the minimally conscious state is like a flickering light bulb state. This is a light bulb that can sometimes turn on and the circuit can be completed to create light. The question is, how do we turn it on all the time, or at least keep it on more often so that we can notice the person is conscious and therefore engage with them.
Smith- I think that’s the interesting thing about the brain. The perception is that you can somehow scan people’s brains and get a clear picture of what’s going on. The problem is that you would only be measuring that current moment. We need to be monitoring a lot more so that we can catch the times in which the person may be conscious. How do you propose that we can catch these people in the conscious state?
Fins- One technology that I am particularly excited about is the electroencephalogram (EEG), which would allow physicians to continuously monitor electrical waves in the brains of their patients, in real time unlike fMRI which has a lag period. Although EEG is still experimental, it may be possible to use mathematical spectral analysis to look at the changing patterns of the brain and identify certain patterns that might suggest the recovery of consciousness or a higher probability of a recovery of consciousness. But the brain is immensely complicated. What it really comes down to is good old-fashioned bedside work. Currently the most reliable test to determine whether someone is in the minimally conscious state or not is the Coma Recovery Scale Revised exam developed by my colleague Joseph Giacino who is now at Harvard Medical School. It’s basically bedside testing based upon asking the patient to do certain kinds of things and certain commands.
Smith- Which is indicative of some sort of consciousness?
Fins- Right. The test gages the patients’ ability to follow a command and to engage with the world. So the minimally conscious state is a state where people have intention, attention, memory, and are able to demonstrate awareness of self to others in their environment. Since these people can only sometimes be in a state of consciousness you have to perform the exam more than once. Performing the exam multiple times allows you to have a good sample size, which may allow us to catch the patient when they are “there”. They are always “there” but we want to catch the moments in which they are capable of communicating with us and demonstrating that they are there.
Smith- Have you had any experience with any patient that was deemed vegetative but was actually minimally conscious?
Fins- Oh sure.
Smith- So what happens at that point? How did you determine this person was minimally conscious?
Fins- Because of careful and interested testing. A lot of what happens is that people go to these nursing homes and everybody stops caring. There’s not a lot of testing and there’s not a lot of medical vigilance. There’s almost a disinterest or nihilism. People think that these patients aren’t going to get better so there’s no need to pay attention to them anymore. I just wrote a paper about this in AEON.