“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 It is also used as the grounds for an argument that nutritional support should be withdrawn so that the patient can be “allowed to die peacefully,” as evidently dehydration and starvation are “peaceful.”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.
Excellent post. However, I’m a bit concerned with the article in the Telegraph because it is reporting on research from Dr. Adrian Owen, who is a close collaborator with Dr. Steven Laureys, who is at least complicit in several cases where a locked-in patient is forced to use Facilitated Communication. I am waiting on independent research that corroborates Dr. Laurey’s results.
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.
Yes yes yes yes yes. Perfectly stated.
Long term “care” facilities where “patients” are basically shelved like inanimate objects should be illegal. It is so distressing that in the richest nation in the world, this is even happening.
The existence of “good” facilities is the exception, not the rule, as the power structures in such places practically guarantee abuse and require exceptionally ethical people to overcome that. Goodness is in spite of the places, not because of them. You should not have to place a disclaimer that many such places are probably good, the idea that they are is primarily wishful thinking on the part of the nondisabled. Even the best such places, which are without overt abuse or neglect, place restrictions on the residents that no nondisabled person would allow themselves put under. The fact that disabled people are pressured to find any such environment acceptable, is part of the oppression of disabled people as a whole. Which is why the majority of disability rights activists are firmly opposed to the existence of these places (and anyone who thinks they are less expensive, or provide more care than a person could ever get on the outside, has probably heard too much propaganda from the nursing home lobby). Which is why there is no reason at all for such a disclaimer to have to exist on a blog like this one, or for people to assume that reform within the existing system, rather than replacing it with a system totally unlike this (and in which nondisabled people would not mind living) is the answer to the problems caused by these places.
Amanda, the reason I placed a disclaimer here is because I did not want to negate the experiences of anyone who might have had a positive experience in a long-term care facility (although I haven’t personally met anyone who has, that doesn’t mean they don’t exist). And I think “Many are no place for human beings.” speaks to the fact that I, too, believe that facilities which are fit for human beings are indeed rare exceptions and I would hope that nowhere in this post was it implied that they are the rule.
I, too, think that there is a serious discussion to be had about the “need” for such facilities (I agree that the current system should be dismantled and replaced), but that, I think, is an issue for a different post; here I mainly wanted to focus on the very problematic approach to diagnosing persistent vegetative state and to the prioritization of some methods of communication over others when it comes to diagnostic evaluations for people with brain injuries. This post was primarily about the need to reform diagnostic criteria, and not about the change in approach needed for people who are currently shunted off into long-term care facilities, but I think it’s important to note that many able people are not interested in reform until they are faced with issues like the vegetative state study, and I think that exploiting that awareness to improve conditions for people with disabilities would be a good thing.
When I read about the study about “vegetative” patients being able to communicate using MRI brain responses, the issue of misdiagnosis of blind locked-in patients came to mind with me, too, but I was unaware there was actual data suggesting this actually happens. This is very shocking news to me.
Beyond this, however, like you point out, it shouldn’t be about abled people’s definitions of “responsiveness” and “communication”. Even the current MRI communication method (which is probably quite expensive, so I’m pretty sure there will be people deemed not “deserving” it) will be unsuitable for a number of people. Researchers or doctors, who by definition have a fair bit of conventional communication skill, should not be deciding for other humans whether they “deserve” quality care. Their abled privilege will always show if they do. (The same goes for us if we make these judgments, of course, since by being on the Internet we demonstrate some conventional communication skill, too, but since your references were to medical studies I’m using that.)
This post brings back memories of the Terri Schiavo case from a few years ago.
I remember arguments from one side stating that care should be continued until “natural death” (which wasn’t well defined) regardless of whether or not the patient was conscious on any level, and arguments from the other side saying that her life wasn’t worth living and treatment should be ended. And arguments from both sides as to who should legally be able to make that decision.
I don’t remember any intelligent discussion about the accuracy of vegetative state diagnoses or about the ableism inherent in trying to determine for someone else that their life isn’t worth living.
I guess I still don’t know what the right thing is to do in a situation where someone isn’t conscious in any measurable way, where there is no indication that they ever will be, and where they have never expressed their own wishes.
But I do think its impossible to make the right decision without understanding the limitations of tools used for measuring consciousness and when ableism plays into it.
I agree with Amanda. There is absolutely no need for that disclaimer, and in fact IMO it seriously weakens the post (as well as defending the utterly indefensible).
The problem is not that there are too many “bad long-term “care” facilities” relative to “good long-term “care” facilities”. The problem is that the concept of such a “facility” exists at all. The thing itself is the abuse.
(Incidentally, the post of Amanda’s which i linked to there, which describes far better than i could how the institutions which seem “quite lovely and very nice to be in” can actually be worse than the blatantly-horrible ones, has lost its images and become a bit messed up in formatting as a result of this – Amanda, i don’t know if you were aware of that? I think it might have happened in one of your recent template changes, judging by similar things that have happened to some of my older posts.)
While there might well be people who claim that they have had positive experiences in such places, this is due to the incredibly powerful processes of internalising oppression that happen there – it’s comparable to women in abusive relationships defending their abusers (but compounded by the fact that the vast majority of society doesn’t even remotely recognise the power structures of institutions as abusive, due to how deeply ingrained unconscious disablism is in Western society). “A good institution” should be seen as as oxymoronic a phrase as “a good rape”.