When The Vegetative Patient May Be Able To Communicate

By Judy Foreman
Guest Contributor

One of the most vexing emotional and ethical issues in all of medicine is the decision by family members to “pull the plug,” that is, to take a severely ill, non-communicate relative off of the life-support systems keeping him or her alive.

What makes this decision so hard, of course, is, absent a really clear statement ahead of time from the patient about end-of-life wishes, family members basically have to guess. But there may be – not yet, but someday – a way to make this agonizing guesswork a bit easier, thanks to a stunning series of recent experiments by Adrian Owen, who holds the prestigious Canada Excellence Research Chair in cognitive neuroscience and neuroimaging at the University of Western Ontario.

(Digital Shotgun/flickr)

The recent work by Owen, and others, using fMRI brain scanning technology shows that some patients diagnosed as being in a persistent vegetative state may actually have some degree of consciousness and be able to communicate, that is, by sheer thinking, be capable of answering comparatively simple questions such as “are you in pain?” (Obviously, that’s a much simpler question than “do you want to die?”)

The particular patient generating the latest excitement is 39-year old Scott Routley who, 12 years ago, had a car accident that left him with a severe brain injury. By standard tests, doctors thought he was in a persistent vegetative state, or PVS.

A quick primer here. There are various degrees of consciousness. In a coma, a patient looks asleep – the eyes are closed, the person doesn’t move and tests with an EEG (electroencephalograph) look much like the brain of someone under general anesthesia.
A persistent vegetative state is different. The patient’s eyes are open, he or she has regular sleeping and waking cycles and may actually look around, not really “at” anything, but with a so-called “roving gaze.” The person may even have REM, or dream, sleep stages. PVS is so confusing to onlookers – and doctors – that if a group of people watched a video of such a patient, half would say the patient was conscious and half would not. While a coma may last only briefly – as when someone gets whacked with a baseball bat – a vegetative state can last for years. If someone does recover from the vegetative state, at best he or she will be severely disabled.

In between PVS and severe disability is the so-called minimally conscious state (MCS). If you ask minimally conscious people to move a hand or look somewhere specific, they do so often enough that it’s clear they are responsive, while a PVS patient can never do that. (All these states, by the way, are different from “locked-in syndrome,” in which a person is fully conscious and cognitively intact but is unable to move except, in some cases, to blink their eyes to communicate.)

After his accident, Scott Routley couldn’t communicate and the usual tests showed no signs of awareness. Owen, who told me he has believed for 15 years that some PVS patients like Routley are “actually conscious but can’t show it.” Owen is now convinced that Routley is “definitely not” in a persistent vegetative state. (He has also documented Routley’s responsiveness with an EEG, a simpler technology than fMRI.)

Essentially, Owen trained Routley to answer questions through a kind of game. When he asked Routley to imagine himself playing tennis, a particular part of his brain, the premotor cortex, lit up on the fMRI brain scans “with a very big signal.” (The premotor cortex sends signals to the motor cortex, which actually signals muscles to move.) Routley learned that imagining to play tennis, thus lighting up this part of his brain, meant “yes.”

Owen then trained Routley to imagine himself walking through a familiar house from room to room. When Routley did this, a totally different part of his brain lit up, the parahippocampal gyrus, which helps people navigate through space. Routley learned that imagining this activity meant “no.” In a series of sessions, Routley was able to correctly answer questions like “Is the sky blue?” “Are bananas yellow?” convincing Owen that Routley could communicate “yes” and “no.” He then asked Routley if he was in pain, and Routley answered “no.” Routley was also able to show that he knew he was in a hospital, that he knew the year of his accident and knew what the current year was. “This guy is conscious, he just clinically appears vegetative,” Owen told me.

I think this is fabulous. And scary. It would be wonderful to know what an uncommunicative relative really wants. And terrible to depend too much on technology that, like the humans who invent it, might be wrong. And so far, none of this means that doctors should perform fMRIs on everyone with severe brain injuries, says Robert Truog, a professor of medical ethics, anesthesia and pediatrics at Harvard Medical School. But it could provide a way, Truog says, to ask some severely brain-damaged patients whether they value their life as it is “before we would make a decision to give comfort measures only.” I agree we should proceed, but with caution. More importantly, so does Owen. “I don’t think we should ask someone if he wants to live because we can’t do anything about it – there is no legal framework that supports euthanasia,” he said. But that legal framework may already be in the works.

But before he could say more, he had to get off the phone: The lawyers were calling.

Judy Foreman, a health reporter in Boston, just completed a book about chronic pain: “A Nation in Pain: Healing Our Biggest Health Problem.”

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  • Ryan Healy

    The story is very fascinating, but it’s not more than a splash article–there’s no breadth about possible implications in a medical or legal sense and no comparative patient to mirror or contrast with Routley.

  • Mjkropf

    This is akin to what is referred to in the medical community as a ‘Locked In Syndrome’.
    It is a very daughnting thing to diagnose, and harder to deal with the possibility of its occurrence.
    It is my habit of always addressing the seemingly unknowing patient as if he/she were alert in the unlikely event that the patient could feel ‘validated’.

  • mittoon

    As a psychiatrist who has worked in hospital settings, I have seen many patients in this situation and the enormous distress these situations cause the families, loved ones, friends and those who caring for the families and patients. Like many “popular science” articles about RESEARCH DISCOVERIES THAT MAY ONE DAY HAVE CLINICAL APPLICATIONS( and surly with it, “The Calling Lawyers”) it is incorrect to assume that the “consciousness” and “wakefulness” that I assume most people reading this experience is exactly the same or even very close to what is described in this article in the patient. Conscious experience, wakefulness and the behavioral manifestations familiar to most of us can be easily correlated with functional MRI imaging and would likely be distinguishable from what is described here. And as articles in the links provided here point out, measurements with EEG’s are even cruder, less reliable indicators that there is a “complete autobiographical consciousness” linked to the patient. “Consciousness” is an “emergent” phenomena that occurs when the billions of neurons and the millions of interacting circuits formed by the interconnected neurons (supported by the trillions of chemical activities in the body that supports the brain’s functioning) act in a coordinated way. I would refer the interested reader to a New England Journal of Medicine article, 2/18/10, p.579-589 “Willful Modulation of Brain Activity In Disorders of Consciousness” which showed that 5 of 54 patients in “persistent vegetative states” could “willfully modulate brain activity,” evidenced by functional MRI only, not by anything one could observe behaviorally. Only one of these patients could demonstrate “yes” or “no” answers on fmri. Bottom line is that these techniques, however, fascinating, need conservative interpretation since I would agree with the conclusions of the authors of the NEJM article: “…a small proportion of patients in a vegetative or minimally conscious state have brain activation reflecting some awareness and cognition.” There is no evidence at this point that “will,” “mind,” “person,” “self,” or “identity” as we commonly use the terms are the same thing as is described. Some desperate family members and those desperate lawyers ( Different forms of desperate. I don’t dislike like all lawyers, even all “desperate lawyers.” We all know the “Desperate Lawyer Disordered” lawyers I’m referring to), will surely find reasons to think that this research indicates a clear path of action to “preserved life.” All sorts of religious mythology may be proclaimed in the name of “preserving life.” Images of the “Death Panels” will be invoked. People need to understand that while bio-technology may make the definitions of “life” murkier because it can now explore the boundaries between “alive” and “no alive” more thoroughly but not necessarily with greater conclusive clarity, there is no good body of evidence that what this article speaks of is “life as we commonly know it” and/or that it means there might be an exceedingly small chance, not to mention any substantial and genuine probability that the person will recover what they, and those who loved them, once enjoyed. Medicine and biology are exceedingly clever, some might even say dangerously unethical (my view, yes, sometimes), at developing and discovering what become clinical situations for which we yet have no really sturdy ethical framework, save a body of slowly evolving medical ethics and received theological notions. I’d go so far as to say we hardly have the language to accurately describe what is being discussed. Better than keep very low probability of recovering patients physiologically alive at costs that could benefit thousands of truly living people (yep, it’s rationing, but doctors are already involved in making these decisions as are medical professionals and families in hospice situations, sometime without clear direction from the person who is ill) people should, from an early age, understand that technology can prolong physiology without prolonging “life as we know it.” The facts of life should include the modern facts of death and, therefore, everyone should have clear instructions regarding “end of life care” that includes termination of a “persistent vegetative state after x amount of time.” And like all clinical situations, it will take the cooperation of medical people, ethicists, spiritual advisors and humane legal minds to come up with guides that generality apply and may need ongoing modification for each situation. The interested reader might also want to view “The Feeling of What Happens,” by Antonio Damasio, M.D., Harcourt, Inc. 1999, for an excellent, accessible and thoughtful review of the neurology from which consciousness “emerges.” For “emergent phenomena” in complex, non-linear dynamic systems (uh…like us), Roger Lewin’s “Complexity: Life at the Edge of Chaos” is a good start.

    • Trena

      Thank you so much for this very thoughtful, excellently written comment; one of the most excellent I’ve ever read on NPR articles.

  • Vicki

    Fascinating story.