Of all the arguments for the extraordinary effort to keep Terri Schiavo alive, the most powerful has always been that removing her feeding tube and allowing her to starve and dehydrate amounts to torturing her to death. Does it?
In theory, no — whether or not Schiavo is neurologically capable of feeling pain, which is in dispute. When a feeding tube is removed, pain medicine is administered to stave off hunger pangs and thirst. No pain, no torture. But in the case of Kate Adamson, the author of Kate’s Journey: Triumph Over Adversity, something went wrong. After a stroke, Adamson was misdiagnosed as being in a permanent vegetative state, when in fact she was in a “locked-in state,” conscious but unable to move. She recovered to tell the tale of what it felt like when her feeding tube was removed so that doctors could perform surgery to remove a bowel obstruction that had developed.
Adamson felt everything, from the starvation and thirst to the surgery itself, for which she was not sufficiently anesthetized. She has described her hunger pangs and thirst as “sheer torture” that went on for days and was “far worse” than the hours she endured abdominal surgery.
Adamson apparently was either not given pain medication, or not given it in a sufficient dose. How could that happen? It happens every day, and not only to patients who are incapable of communicating their discomfort to their doctors. A Brown University study, reported in the Journal of the American Medical Association in 2002, found that 40 percent of nursing home patients with acute or chronic pain nationwide did not get treatment that brought them relief. Also in 2002, a study written by a panel for the National Institutes of Health estimated that between 26% and 41% of cancer patients are inadequately treated for pain.
Dr. Paul Frame of the Rochester University School of Medicine, a member of the NIH panel, pointed to federal and state drug regulations as exacerbating the problem. “Sometimes doctors don’t want to go to the hassle of prescribing a triplicate drug,” said Frame, referring to the forms that must be filed in many states when strong drugs are prescribed. “They may decide to use something less effective instead.”
In 2003 alone, the Drug Enforcement Agency arrested 50 doctors and investigated hundreds more. The most prominent recent case was that of Dr. William Hurwitz, a chronic pain specialist convicted in December of drug trafficking because a small percentage of his patients misused the drugs he prescribed or sold them on the black market; federal prosecutors are seeking a life sentence. Small wonder that doctors are reluctant to treat pain as aggressively as they should. “Physicians’ fears of using opioid therapy, and the fears of other health professionals, contribute to the barriers to effective pain management,” says the American Medical Association on its website.
The DEA’s actions don’t just affect the doctors who have to worry about whether they can trust their patients or even the chronic pain sufferers who have trouble finding doctors willing to help them. Remember, even patients in hospitals and nursing homes, many of them on the verge of death, are being undertreated for pain. This isn’t a new problem — it was first identified in the 1970s — and since at least the mid-'90s experts have urged doctors to be less stingy with synthetic and natural opioids than the conventional wisdom once advised. Surely, they’d have more success if drug warriors weren’t sending the opposite message.
Whether or not you think Terri Schiavo ought to be allowed to die, there is no reason for her to die in pain. We can only hope that she is being medicated sufficiently. And if it’s your loved one whose pain needs treatment, don’t merely hope. Insist.