The Loom

Suffering and Knowing

The case of Terri Schiavo has moved back into the Bleak House realm of endless trips to the courthouse. As I mentioned in an earlier post, Schiavo lost consciousness thirteen years ago, and her husband has been trying for the past few years to have her feeding tube removed over the objections of her parents. The Florida legislature recently passed a law that gave Governor Jeb Bush the authority to order Schiavo’s tube put back in, and now her husband is going to court to challenge the constitutionality of the law.

The frenzy of editorials and TV interviews is beginning to subside, but only a little. Nat Hentoff at the Village Voice has promised a whole series of columns on the subject. In principle, this is a good thing. People with impaired consciousness are for the most part in society’s blind spot. We just don’t talk about them or their treatment unless some news forces their existence to our attention. Unfortunately, a lot of the stuff I’ve read has been pretty loud and strident. And even when writers seem to be offering a measured take on the subject, they frequently rely on bait-and-switch rhetoric.

Case in point is “A ‘Painless’ Death?’–an essay posted today on the Weekly Standard’s web site by attorney Wesley J. Smith. Smith takes issue with the claim that removing a feeding tube leads to a painless and gentle death by dehydration and starvation. Smith claims that the pro-removal side blur the difference between removing food and water from cognitively disabled people and conscious people refusing food and water as they die of cancer or some other disease. It’s a fair point to consider, but Smith does plenty of blurring in his own essay.

For example, he quotes a neurologist opposed to removing feeding tubes who says that “A conscious [cognitively disabled] person would fell it just as you or I would.” The neurologist then offers a gruesome picture of cracked lips and vomiting and seizures. Smith then quotes an advocated of removing tubes who offers even more details–mottled hands and feet, blood shunted to the core of the body.

All shocking stuff, of course, but if someone is not aware of pain, what does it really mean? Is Schiavo “a conscious [cognitively disabled] person” (whatever that creative bit of bracketing means)? Or is she in a persistent vegetative state with no hope of awareness?

To answer that question, Smith offers up the testimony of Kate Adamson, a woman whose feeding tube was removed even though she was fully conscious. Adamson tells of the agony she experienced going without food and water for days. She describes obsessively visualizing a bottle of Gatorade. Smith mentions briefly that Adamson was in what’s known as a “locked-in state,” but he then glides past the fact that biologically speaking, the brain of a locked-in patient is profoundly different from that of someone in a persistent vegetative state.

In a locked-in state, a person’s cerebral cortex–the region where we do most of our complex thinking–escaped major injury. Instead, the damage is restricted to nerve fibers that send commands from the brain to the body. It’s like spinal cord paralysis in your brain, and it leads to a nearly total lack of movement. As I described in my recent article for the New York Times Magazine, brain scans of people in persistent vegetative states show–at most–that only isolated fragments of the cortex are active. But the overwhelming majority of the cortex uses as much energy as the cortex of a healthy person under deep anasthesia.

It’s certainly true–and awful–that some locked-in patients have been misdiagnosed in the past, although now that the condition is better known, any good neurologist can quickly make the right diagnosis. But to dwell on Adamson’s case in the middle of an essay that’s supposedly about Terri Schiavo is a case of apples and oranges. And the emotional whiplash of Adamson’s experience distracts the reader from the non sequitur of Smith’s argument. To those who would question bringing up locked-in patients in a discussion of the vegetative state, Smith answers that “the PVS diagnosis is often mistaken–as indeed it was in Adamson’s case.” Apple, have you met Orange?

Smith offers up a few vague scraps of evidence that Schiavo can feel pain, but they don’t amount to much. I have yet to hear of a real neurologist who has concluded that she is in anything other than a vegetative state. And yet Smith somehow thinks he has fused Schiavo’s condition with Adamson’s so conclusively that he can end his essay as follows:

“The time has come to face the gut wrenching possibility that conscious cognitively disabled people whose feeding tubes are removed–as opposed to patients who are actively dying and choose to stop eating–may die agonizing deaths. This, of course, has tremendous relevance in the Terri Schiavo case and many others like it. Indeed, the last thing anyone wants is for people to die slowly and agonizingly of thirst, desperately craving a refreshing drink of orange Gatorade they know will never come.”

Instead of bringing clarity to the issue, Smith has succeeded in muddling it even more.

Here are two important issues that I think need unmuddling. One is biological, the other ethical.

First, the biological. A person in a vegetative state does not visualize bottles of Gatorade. That would call for activity in the cerebral cortex that’s just not there. As for pain, much of our experience of it relies on the cerebral cortex. It makes us aware of the pain, generates fears of future pain, and so on. With a cortex under deep anesthesia, it’s hard to argue that such people experience “agonizing deaths.” Their fully conscious loved ones may suffer at the sight of a seizure or mottled skin, but they can’t project that suffering into the mind of the patient. Furthermore, in the 2002 book The Vegetative State, the leading neurologist Bryan Jennett writes that the medical consensus is that soon after withdrawal of a feeding tube, the body’s own pain-killing opioids flood the nervous system.

Second, the ethical. Smith mentions the fact that people sometimes refuse food and water in the final stages of terminal illness, but then moves quickly away from this fact. How is it that people are allowed to refuse medical treatment and even food and water from doctors, despite being fully conscious of their own suffering? Because they have a legal right. They also have a right to make a living will to make their desires clear if they wind up in a state in which they cannot make the decision about whether to refuse care. And when there’s no living will, it’s up to a legal guardian to make that decision. Despite the fact that he’s a lawyer, Smith avoids all these legal realities. That would distract from the specter he raises of homicidal monsters trying to yank out whatever feeding tube they can find. The fact is that if a guardian decides that a patient would want to live in a vegetative state, that’s that. (People have raised questions about Terri Schiavo’s husband’s fitness as a guardian, which I have no way to judge. But that’s a separate issue–if he’s unfit, someone else can make the decision; if he’s fit, then it’s his call.)

PS–Brains and evolution are intertwined interest of mine, and so I raised an eyebrow when I saw Smith’s bio. In addition to a lawyer, he’s a senior fellow at the Discovery Institute. This, some readers may recall, is the outfit that has been leading the fight against evolution in public schools. Sometimes the DI folks like to portray themselves as disinterested scientists searching for objective truth. But their agenda is actually ideological and broad–broad enough to include someone like Smith.

Update: Thanks to Pharyngula for an overview of Smith’s other writings on biotech and the like–equally untenable scientifically, and equally in tune with the overall political agenda of the Discovery Institute.