The so-called pro-life movement loses interest in those zygotes and fetuses the minute they’re born. Many of the same people who wave pictures of aborted fetuses cheer the deaths of people on death row. But another kind of death penalty is being imposed on people with consciousness disorders, of which as many as 20% are fully or partially aware. What’s worse, pulling the plug is often portrayed as merciful.
My mom thinks my nurses were gently nudging her toward pulling the plug. She says they emphasized my limited quality of life even if I woke up.
When this particular hopeless vegetable did in fact awaken, my main complaint about the ventilator concerned not being able to talk. Eventually, that deficit — which was a handicap in the extreme for a highly verbal person — was eventually address by a couple of different methods before my trach was removed. And certainly, the ventilator was better than being dead.
Many people express horror at the idea of being tied to a machine “artificially” keeping them alive. But I don’t believe I’m going anywhere but the ground after I die, so I want to live as long as possible in any way possible.
And, at any rate, if I had been such a person with a fear of being on life support, I might not be here today…above ground and breathing on my own.
A key component of this phobia is the idea that they’ll be kept alive while being a completely insensate vegetable. Yet research has shown that as many as 20% of seemingly unresponsive vegetative patients are actually fully or partially aware.
I was perfectly happy in my dream world, mixed with elements leaking in from the real world. The only scary coma-dream I experienced was the very last one before awakening. And I wanted to go back to sleep to see how my dream of bloodthirsty, sentient office machines would turn out, But, alas, I’ll never know if I would’ve defeated this man-eating machinery.
I was awake for good.
Besides Juan Torres and me, we only know about a fraction of those covertly aware patients — the select few lucky enough to have taken part in a research project like the ones conducted by Dr. Adrian Owen and his Owen Lab team.
When Scott Routley was shown to be covertly aware, his DNR was rescinded. He eventually succumbed to complications of the car accident that put him into a vegetative state. But Scott died only after years of contributing to science and his own care via Dr. Owen’s tennis technique.
Scott’s family had long contended to disbelieving doctors that Scott was aware. Pulling the plug was never an option they would consider. But what about those who unquestioningly believe what the doctors tell them from on high. After all, aren’t they the experts?
No. They frequently become jaded after years of seeing tragic cases. And many of them aren’t aware of the latest findings of covert awareness researchers.
My own neurologist had never heard of Dr. Owen and his widely publicized findings.
The fact is, Owen Lab researchers always confirm a patient’s vegetative diagnosis before testing them for awareness. The current state of evaluation simply can’t distinguish between the truly vegetative and those whose entombed minds remain active.
That’s why they’re working on ways to make awareness testing mobile, taking it to every hospital and care facility.
But until their techniques are perfected, we’ll still have thousands of covertly aware patients at risk of being given a death sentence. Their executioners are usually well-meaning people — often the very people who love them the most.
In the CNA student mock trial for which I provided expert testimony — as a recovered coma patient — the husband was suing to permit pulling the plug (or, more accurately, remove his wife’s feeding tube). Her family, who had power of attorney, wanted to keep Christine Johnson alive, believing that she might eventually recover from her auto accident.
To quote from the case study provided to me:
Steven Johnson her husband would like to cease the tube feedings and let her pass. He feels that’s it’s a dignified way to die. He also feels that prolonging her life would be inhumane.
I dislike the terms “pass” or “pass on” because they imply passing onto a different realm, presumably Heaven. But what I hate more is the idea that it would be inhumane not to kill a person, as if his wife were a horse with a shattered leg put out of its misery.
If Christine were truly vegetative, she wouldn’t be able to feel pain or discomfort. If, however, she’s covertly aware, you would killing a conscious person who may well prefer to live. In the future, we might be able to ask patients to decide for themselves.
Pulling the Plug from an Active Mind?
Belgian neurologist and leading covert awareness researcher Steven Laureys asked the very first vegetative patient to communicate using Dr. Owen’s tennis method whether he wanted to die. The answer was equivocal, neither yes nor no.
In Dr. Owen’s book, Into the Gray Zone: A Neuroscientist Explores the Border Between Life and Death, he theorizes that this was due to the fact that the question itself isn’t clear cut. As he puts it:
Perhaps John’s response was, “Well, it depends what the alternative is!”
Indeed, the patient Dr. Owen nicknamed John (he never actually learned the patient’s real name), may well have had a chance for at least a partial recovery. Adrian Owen has shown that responsiveness to awareness testing is correlated with a much higher likelyhood of some level of recovery. If Scott Routley had lived, he might have eventually regained an extent of responsiveness.
After John was transferred, Dr. Owen — who was consulting with Dr. Laureys on his case — lost track of him. We’ll never know whether “John” ever experienced a limited recovery.
In rare cases, patients have awoken decades after sinking into an apparent vegetative state. Others, like Martin Pistorius or Rom Houbin, slowly emerge into a locked-in state, only to have their total awareness remain unrecognized for years afterward.
Just as it’s certain that countless people have been executed for crimes they didn’t commit, there have been undoubtedly many patients with the most severe forms of locked-in syndrome who have had their life support discontinued. These are people who are as fully conscious as you or I, but can’t even control their eyelids or have the subtle signs of their awareness missed.
But, you may say, even Martin Pistorius admits he tried to commit suicide by holding his breath (which is impossible). Yes, but that was because his awareness had yet to be discovered.
Martin is now happily married.
A study by Dr. Laureys showed that 72% of people with locked-in syndrome are happy. They find enough fulfillment to overall express contentment with their severely constrained lives. Only 7% longed for pulling the plug from their own lives.
If you project that figure as anywhere close to what the covertly aware might opine if given a choice, that suggests the vast majority would prefer to remain alive. The will to survive is powerful, and most people are more resilient than they know.
I’m not sure if Christine Johnson’s case is real or not. It sounds awfully close to that of Terri Schiavo. Then again, it’s an all too common scenario. But if it is based on a real life case, her husband Steve may well have truly believed that slowly starving his wife would be more humane than letting her live. Yet that assumes that her body is an unfeeling, empty shell.
Of course, it would be completely understandable if Steve unconsciously wanted to put an end to his own pain at watching Christine lay in her bed unresponsive, grieving for the woman she once was. On autopsy, Terry Schiavo’s brain was found to be severely atrophied. In other words, she truly was a hopeless vegetable.
But what what if she hadn’t been?
The more we learn about cognition in the vegetative, the more we realize how little we know.
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