MANY WHO SUPPORT Terri Schiavo’s threatened dehydration assert that removing a feeding tube from a profoundly cognitively disabled person results in a painless and gentle ending. But is this really true? After all, it would be agonizing if you or I were locked in a room for two weeks and deprived of all food and water. So, why should we believe that cognitively disabled patients experience the deprivation differently simply because they receive nourishment through a feeding tube instead of by mouth?
An accurate discussion of this sensitive issue requires the making of proper and nuanced distinctions about the consequences of removing nourishment from incapacitated patients. This generally becomes an issue in one of the following two diametrically differing circumstances:
- Depriving food and water from profoundly cognitively disabled persons like Terri who are not otherwise dying, a process that causes death by dehydration over a period of 10-14 days. As I will illustrate below, this may cause great suffering.
- Not forcing food and water upon patients who have stopped eating and drinking as part of the natural dying process. This typically occurs, for example, at the end stages of cancer when patients often refuse nourishment because the disease has distorted their senses of hunger and thirst. In these situations, being deprived of unwanted food and water when the body is already shutting down does not cause a painful death.
Advocates who argue that it is appropriate to dehydrate cognitively disabled people often sow confusion about the suffering such patients may experience by inadvertently, or perhaps intentionally, blurring the difference between these two distinct situations. For example, when Michael Schiavo, Terri’s husband, and his attorney, George Felos, appeared on the October 27, 2003 edition of “Larry King Live” the following exchange occurred:
KING: When a feeding tube is removed, as it was planned [for Terri], is that a terrible death?
SCHIAVO: No. It’s painless and probably the most natural way to die.
FELOS: When someone’s terminally ill, let’s say a cancer patient, they lose interest in eating. And literally, they—by choice—they stop eating.
SCHIAVO: Cancer patients, they stop eating for two to three weeks. Do we force them to eat? No, we don’t. That’s their choice.
Later in the interview, Schiavo reiterated the assertion in a response to a telephoned question:
CALLER: Does it bother you that the death is so slow?
SCHIAVO: Removing somebody’s feeding tube is very painless. It is a very easy way to die. Probably the second best way to die, the first being an aneurysm.
Yes, it is true that when people are actively dying from terminal disease, they often refuse food and water. The disease makes the food and water repulsive to them. In such circumstances, it is medically inappropriate to force food and water into a person who is actively rejecting it. Indeed, doing so could cause suffering.
But this isn’t what is happening to Terri. She isn’t dying of cancer. Her body isn’t shutting down as part of the natural dying process. Indeed, she is not dying at all — unless her food and water is taken away.
WHAT HAPPENS to non-terminally ill people with cognitive disabilities whose feeding tubes are removed? Do they suffer from the process?
When I conducted research on this question in preparation for writing my book Forced Exit, I asked St. Louis neurologist William Burke these very questions. Here is what he told me:
A conscious [cognitively disabled] person would feel it just as you or I would. They will go into seizures. Their skin cracks, their tongue cracks, their lips crack. They may have nosebleeds because of the drying of the mucus membranes, and heaving and vomiting might ensue because of the drying out of the stomach lining. They feel the pangs of hunger and thirst. Imagine going one day without a glass of water! Death by dehydration takes ten to fourteen days. It is an extremely agonizing death.
Dr. Burke opposes removing feeding tubes from cognitively disabled people and so some might dismiss his opinion as biased. But Minnesota neurologist Ronald Cranford’s pro-dehydration testimony in the Robert Wendland case — Cranford also testified that Terri’s feeding tube should be removed — supports much of what Dr. Burke asserted. While Cranford called seizures “rare,” his detailed description of the dehydration process reveals its gruesome reality:
After seven to nine days [from commencing dehydration] they begin to lose all fluids in the body, a lot of fluids in the body. And their blood pressure starts to go down. When their blood pressure goes down, their heart rate goes up. … Their respiration may increase and then … the blood is shunted to the central part of the body from the periphery of the body. So, that usually two to three days prior to death, sometimes four days, the hands and the feet become extremely cold. They become mottled. That is you look at the hands and they have a bluish appearance. And the mouth dries a great deal, and the eyes dry a great deal and other parts of the body become mottled. And that is because the blood is now so low in the system it’s shunted to the heart and other visceral organs and away from the periphery of the body …
MOST OF THE TIME, we never know for sure what a starved or dehydrated person experiences. But in at least one case—that of a young woman who had her feeding tube removed for eight days and lived to tell the tale—we have direct evidence of the agony that forced dehydration may cause.
At age 33, Kate Adamson collapsed from a devastating and incapacitating stroke. She was utterly unresponsive and was diagnosed as being in a persistent vegetative state (PVS). At the urging of doctors, who believed she would never get better, her nourishment was stopped. But midway through the dehydration process, she began to show subtle signs of comprehension, so her food and water were restored.
Adamson eventually recovered sufficiently to author “Kate’s Journey: Triumph Over Adversity,” in which she tells the terrifying tale. Rather than being unconscious with no chance of recovery as her doctors believed, she was actually awake and aware but unable to move any part of her body voluntarily. (This is known as a “locked-in state.”) When she appeared recently on “The O’Reilly Factor,” host Bill O’Reilly asked Adamson about the dehydration experience:
O’REILLY: When they took the feeding tube out, what went through your mind?
ADAMSON: When the feeding tube was turned off for eight days, I thought I was going insane. I was screaming out in my mind, “Don’t you know I need to eat?” And even up until that point, I had been having a bagful of Ensure as my nourishment that was going through the feeding tube. At that point, it sounded pretty good. I just wanted something. The fact that I had nothing, the hunger pains overrode every thought I had.
O’REILLY: So you were feeling pain when they removed your tube?
ADAMSON: Yes. Oh, absolutely. Absolutely. To say that — especially when Michael [Schiavo] on national TV mentioned last week that it’s a pretty painless thing to have the feeding tube removed — it is the exact opposite. It was sheer torture, Bill.
O’REILLY: It’s just amazing.
ADAMSON: Sheer torture . . .
In preparation for this article, I contacted Adamson for more details about the torture she experienced while being dehydrated. She told me about having been operated upon (to have her feeding tube inserted in her abdomen) with inadequate anesthesia when doctors believed she was unconscious. Unbelievably, she described being deprived of food and water as “far worse” than experiencing the pain of abdominal surgery, telling me:
The agony of going without food was a constant pain that lasted not several hours like my operation did, but several days. You have to endure the physical pain and on top of that you have to endure the emotional pain. Your whole body cries out, “Feed me. I am alive and a person, don’t let me die, for God’s Sake! Somebody feed me.”
But what about the thirst, I asked:
I craved anything to drink. Anything. I obsessively visualized drinking from a huge bottle of orange Gatorade. And I hate orange Gatorade. I did receive lemon flavored mouth swabs to alleviate dryness but they did nothing to slack my desperate thirst.
Apologists for dehydrating patients like Terri might respond that Terri is not conscious and locked-in as Adamson was but in a persistent vegetative state and thus would feel nothing. Yet, the PVS diagnosis is often mistaken—as indeed it was in Adamson’s case. And while the courts have all ruled that Terri is unconscious based on medical testimony, this is strongly disputed by other medical experts and Terri’s family who insist that she is interactive with them. Moreover, it is undisputed that whatever her actual level of awareness, Terri does react to painful stimuli. Intriguingly, her doctor testified he prescribes pain medication for her every month during the course of her menstrual period.
BEYOND THE TERRI SCHIAVO CASE, it is undisputed that conscious cognitively disabled patients are dehydrated in nursing homes and hospitals throughout the country almost as a matter of routine. Dr. Cranford, for example, openly admitted in his Wendland testimony that he removes feeding tubes from conscious patients. Thus, many other people may also have experienced the agony described by Adamson and worse, given that dehydrating to death goes on for about a week longer than she experienced.
AT THIS POINT, defenders of removing feeding tubes from people with profound cognitive disabilities might claim that whatever painful sensations dehydration may cause, these patients receive palliating drugs to ensure that their deaths are peaceful. But note: Adamson either did not receive such medications, or if she did, they didn’t work. Moreover, because these disabled people usually can’t communicate, it is impossible to know precisely what they experience. Thus, when asked in a deposition what he would do to prevent Robert Wendland from suffering during his dehydration, Dr. Cranford responded that he would give morphine but that the dose would be “arbitrary” because “you don’t know how much he’s suffering, you don’t know how much aware he is … You’re guessing at the dose.” At trial, Cranford suggested he might have to put Wendland into a coma, a bitter irony considering that he had struggled over many months to regain consciousness.
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.