In the court (and courts) of life and death, a little 11-year-old Massachusetts girl named Haleigh Poutre could be the next Terri Schiavo. For those who have not heard the tragic story, Haleigh was beaten nearly to death last September, allegedly by her adoptive mother and stepfather. The beating left her unconscious and barely clinging to life.
Within a week or so of the beating, her doctors had written her off. They apparently told Haleigh's court-appointed guardian, Harry Spence, that she was "virtually brain dead." Even though he had never visited her, Spence quickly went to court seeking permission to remove her respirator and feeding tube. The court agreed, a decision affirmed recently by the supreme court of Massachusetts.
And so, no doubt with the best of intentions, a little girl who had already suffered so much was stripped by the Commonwealth of Massachusetts of even the chance to fight to stay alive. If she didn't stop breathing when the respirator was removed, which doctors expected, she would slowly dehydrate to death.
Then came the unexpected: Before "pulling the plug" on Haleigh, Spence finally decided to visit her. He was stunned. Rather than finding a little girl with "not a chance" of recovery, as doctors had described Haleigh's condition to him (as reported by the Boston Globe), Haleigh was conscious. She was able to give Spence a yellow block when asked to by a social worker and respond to other simple requests.
Laudably, Spence immediately called off the dehydration. Haleigh is now off her respirator and breathing on her own. She has been transferred out of the hospital and is currently being treated in a rehabilitation center.
Lest anyone think that Haleigh's apparent consciousness protects her from suffering the fate of Terri Schiavo, who was ordered dehydrated by a Florida court based, in part, on a finding that she was unconscious, think again. In most states, exhibiting consciousness is not a defense against dehydration for profoundly impaired patients. Indeed, cognitively disabled people who are conscious are commonly dehydrated throughout the country. So long as no family member objects, the practice is deemed medically routine.
How can this be? The simple answer is that tube-supplied food and water . . . often called "artificial nutrition and hydration" (ANH) . . . has been defined in law and in medical ethics as an ordinary medical treatment. This means that it can be refused or withdrawn just like, say, antibiotics, kidney dialysis, chemotherapy, surgery, blood pressure medicine, or any other form of medical care. Indeed, removing ANH has come to be seen widely in medicine and bioethics as an "ethical" way to end the lives of cognitively disabled "biologically tenacious" patients (as one prominent bioethicist once described disabled people like Terri Schiavo and Haleigh Poutre), without resorting to active euthanasia.
Defining dehydratable people
It wasn't always so. It used to be thought of as unthinkable to remove a feeding tube. Then, as bioethicists and others among the medical intelligentsia began to worry about the cost of caring for dependent people and the growing number of our elderly . . . and as personal autonomy increasingly became a driving force in medical ethics . . . some looked for a way to shorten the lives of the most marginal people without violating the law or radically distorting traditional medical values. Removing tubes providing food and fluids was seen as the answer. After all, it was argued, use of a feeding tube requires a relatively minor medical procedure. Moreover, the nutrition provided the patient is not steak and potatoes, but a liquid formula prepared under medical auspices so as to ease digestion. There can also be complications such as diarrhea and infection.
Having reached consensus on the matter, the bioethics movement mounted a deliberate and energetic campaign during the 1980s to change the classification of ANH from humane care, which can't be withdrawn, to medical treatment, which can. The first people targeted for potential dehydration were the persistently unconscious or elderly with pronounced morbidity. Thus, bioethics pioneer Daniel Callahan wrote in the October 1983. Hastings Center Report, "Given the increasingly large pool of superannuated, chronically ill, physically marginalized elderly it [a denial of ANH] could well become the non treatment of choice."
In March 1986, the American Medical Association Council on Ethical and Judicial Affairs, responsible for deliberating upon and issuing ethics opinions for the AMA, legitimized dehydration when it issued the following statement: Although a physician "should never intentionally cause death," it was ethical to terminate life-support treatment, even if:
. . . death is not imminent but a patient's coma is beyond doubt irreversible and there are adequate safeguards to confirm the accuracy of the diagnosis and with the concurrence of those who have responsibility for the care of the patient . . . Life-prolonging medical treatment includes medication and artificially or technologically supplied respiration, nutrition and hydration.
There it was: Food and fluids provided by a feeding tube were officially deemed a medical treatment by the nation's foremost medical association, meaning that withdrawing them was deemed the same as turning off a respirator or stopping kidney dialysis.
As often happens in bioethics, once the medical intelligentsia reached consensus, their opinion quickly became law. Thus, in 1990, the Supreme Court of the United States issued its decision in Cruzan v. Director, Missouri Department of Health, which upheld Missouri's law allowing for the removal of life-sustaining treatment from a person, provided there was "clear and convincing evidence" that the person would not have wanted to live. Unfortunately, the Court also agreed that tube-supplied food and fluids is a form of medical treatment that can be withdrawn like any other form of treatment. (This is often erroneously called the "right to die.") With the seeming imprimatur of the Supreme Court, all 50 states soon passed statutes permitting the withholding and withdrawal of tube-supplied sustenance . . . even when the decision was made by a third party.
With that principle established, what did unconsciousness have to do with it? Not a thing. It didn't take long for the American Medical Association to broaden the categories of dehydratable people. Thus, in 1994, a brief eight years after its first ethics opinion classifying tube feeding as medical treatment that could be withdrawn only when the patient was "beyond doubt" permanently unconscious, the AMA proclaimed it "not unethical" to withdraw ANH "even if the patient is not terminally ill or permanently unconscious." And that's where the matter stands today.
But that doesn't make it right. Don't get me wrong: People can and should be able to refuse unwanted ANH for themselves, either directly or in a written advance medical directive. But it seems to me that given the certainty of death when denying a patient sustenance . . . and in light of the profound symbolism of refusing to provide even nourishment . . . a different standard should apply when third parties seek to refuse tube-supplied food and water on behalf of another.
In such cases, medically inappropriate ANH . . . such as when the actively dying body can no longer assimilate sustenance . . . should be able to be refused as other forms of care. But when the decision is a value judgment that a person's life isn't worth living because of disability or perceived "quality of life," then the decision to dehydrate should be considerably constrained.
Which brings us back to poor Haleigh Poutre: Until and unless ANH is recognized as a unique category of care to be governed by its own rules for determining when and whether sustenance can be withheld or withdrawn, Haleigh remains very much at risk. After all, her doctors could still conclude that she will not improve. They could still recommend to guardian Harry Spence that he withdraw her food and fluids lest she grow up profoundly disabled. Spence could still agree that an early death is better than a longer disabled life and ask the courts to sanction her dehydration. The juvenile court could promptly hold a new hearing in which the judge would undoubtedly be told by a bevy of "expert witness" bioethicists that dehydrating this child to death would be ethical and morally appropriate even though she is conscious. The court could still order her to die slowly, over two weeks, of dehydration despite her being awake and aware. And the supreme court of Massachusetts could still give final approval to the decision. Such is the sad state of medical ethics and the law in the United States of America.
This article first appeared in National Review Online and is reprinted with permission.