“Awake, but not aware” is a phrase commonly used to describe patients in a vegetative state. “The lights are on, but nobody’s home” is what a doctor crudely told me when I visited a friend in long-term care last year. The patient does not require life support, but does require nursing care. Sleep-wake cycles are present and the patient may laugh, cry, and react to painful stimuli, but there is no purposeful engagement with the outside world. This diagnosis can be a stop on the way to recovery from a neurological injury, or it can be the end of the line; a patient who remains in a vegetative state for more than a year is treated as being in a “permanent vegetative state” and the recommended treatment is no further treatment.
We are assured that there are strict diagnostic criteria which patients must meet before they can be labeled with this diagnosis, that patients are tested and re-tested for any signs of consciousness. The results of a recent study demonstrating that many patients with this diagnosis have been misdiagnosed and are in fact aware is shocking, especially as it follows on the heels of another study which showed that people in a supposedly vegetative state were capable of learning.
This diagnosis is viewed by many as “akin to brain death” and patients who appear to show no prospects of recovery are shoved off into long-term care homes and abandoned. It is also used as the grounds for an argument that nutritional support should be withdrawn so that the patient can be “allowed to die peacefully,” as evidently dehydration and starvation are “peaceful.” Many people express fear about winding up in a permanent vegetative state and living what they presume to be a half life for an indefinite period of time; people with this diagnosis can and do live for decades with care.
What these studies have shown is that the diagnosis of vegetative state can be wrong. People who are awake and aware, who can learn, generate new memories, and respond to attempts at communication are diagnosed with vegetative state when they should not be. These patients may have what is known as locked-in syndrome, in which the patient is fully awake and aware but unable to communicate by conventional means, although in a few cases patients have communicated by blinking, perhaps most highly publicised in The Diving Bell and the Butterfly.
For patients who lack the ability to blink and can only communicate in ways visible on a functional magnetic resonance imaging study, the wrong diagnosis seems almost inevitable. If initial treatments fail, the patient will end up in long-term care with no hope of escape. Those who have visited or lived in long-term care facilities can testify to their sometimes grim environs[1. The plural of anecdote is not “data” and I am speaking from personal experience visiting an assortment of facilities here; I’m sure that there are facilities out there which are quite lovely and very nice to be in. The problem is that there aren’t more of those facilities.]. Many are no place for human beings.
The risks of long term care don’t stop with acute boredom for people with a misdiagnosis. Rates of abuse in long-term care are distressingly high. Residents are abandoned to lie in their own wastes (trigger warning, graphic descriptions of abuse) and they are sexually abused (trigger warning). People are left to die. This should not be tolerated for any living human being, whether or not consciousness is present, and reform in such facilities is urgently needed. There must be better systems in place for reporting, identifying, and addressing abuse, and it is my hope that these studies will increase the pressure for change among people who may not have considered such issues previously.
And it is clear that we must rethink our approach to what “communication” means and how it should be established. Now that we have learned that communication can be developed with patients previously thought to be incapable of response or engagement, interesting issues about the reification of communication styles are raised. And there is new hope for numerous patients previously thought to be unreachable.
Consider this: “Many patients who are misdiagnosed as being in the vegetative state are blind or have severe visual handicap; thus lack of eye blink to threat or absence of visual tracking are not reliable signs for diagnosing the vegetative state.” (source) If awareness and attempts at communication are often gauged by eye blinks and similar responses, patients who cannot communicate in this way will be assumed to be noncommunicative and nonresponsive. This is a serious diagnostic failing.
As our understanding of the brain deepens, it is obvious that we need to re-evaluate diagnostic criteria. Patients who are aware should not be condemned to long term care with minimal support.