Danger Zone

(for nationalreview.com) In the court (and courts) of life and death, a little 11-year-old Massachusetts girl named Haleigh Poutrecould be the next Terri Schiavo. For those who have not heard thetragic story, Haleigh was beaten nearly to death last September,allegedly by her adoptive mother and stepfather. The beating left herunconscious and barely clinging to life.

Withina week or so of the beating, her doctors had written her off. Theyapparently told Haleigh’s court-appointed guardian, Harry Spence, thatshe was “virtually brain dead.” Even though he had never visited her,Spence quickly went to court seeking permission to remove herrespirator and feeding tube. The court agreed, a decision affirmedrecently by the supreme court of Massachusetts.

And so, no doubt with the best of intentions, a little girl who hadalready suffered so much was stripped by the Commonwealth ofMassachusetts of even the chance to fight to stay alive. If she didn’tstop breathing when the respirator was removed, which doctors expected,she would slowly dehydrate to death.

Close Call Then came the unexpected: Before “pullingthe plug” on Haleigh, Spence finally decided to visit her. He wasstunned. Rather than finding a little girl with “not a chance” ofrecovery, 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 whenasked to by a social worker and respond to other simple requests.

Laudably, Spence immediately called off the dehydration. Haleigh isnow off her respirator and breathing on her own. She has beentransferred out of the hospital and is currently being treated in arehabilitation center.

Lest anyone think that Haleigh’s apparent consciousness protects herfrom suffering the fate of Terri Schiavo, who was ordered dehydrated bya Florida court based, in part, on a finding that she was unconscious,think again. In most states, exhibiting consciousness is not a defenseagainst dehydration for profoundly impaired patients. Indeed,cognitively disabled people who are conscious are commonly dehydratedthroughout the country. So long as no family member objects, thepractice is deemed medically routine.

How can this be? The simple answer is that tube-supplied food andwater — often called “artificial nutrition and hydration” (ANH) — hasbeen defined in law and in medical ethics as an ordinary medicaltreatment. This means that it can be refused or withdrawn just like,say, antibiotics, kidney dialysis, chemotherapy, surgery, bloodpressure medicine, or any other form of medical care. Indeed, removingANH has come to be seen widely in medicine and bioethics as an”ethical” way to end the lives of cognitively disabled “biologicallytenacious” patients (as one prominent bioethicist once describeddisabled people like Terri Schiavo and Haleigh Poutre), withoutresorting to active euthanasia.

Defining dehydratable people It wasn’t always so. Itused to be thought of as unthinkable to remove a feeding tube. Then, asbioethicists and others among the medical intelligentsia began to worryabout the cost of caring for dependent people and the growing number ofour elderly — and as personal autonomy increasingly became a drivingforce in medical ethics — some looked for a way to shorten the lives ofthe most marginal people without violating the law or radicallydistorting traditional medical values. Removing tubes providing foodand fluids was seen as the answer. After all, it was argued, use of afeeding tube requires a relatively minor medical procedure. Moreover,the nutrition provided the patient is not steak and potatoes, but aliquid 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 movementmounted a deliberate and energetic campaign during the 1980s to changethe classification of ANH from humane care, which can’t be withdrawn,to medical treatment, which can. The first people targeted forpotential dehydration were the persistently unconscious or elderly withpronounced morbidity. Thus, bioethics pioneer Daniel Callahan wrote inthe October 1983. Hastings Center Report, “Given theincreasingly large pool of superannuated, chronically ill, physicallymarginalized elderly it [a denial of ANH] could well become the nontreatment of choice.”

In March 1986, the American Medical Association Council on Ethicaland Judicial Affairs, responsible for deliberating upon and issuingethics opinions for the AMA, legitimized dehydration when it issued thefollowing statement: Although a physician “should never intentionallycause death,” it was ethical to terminate life-support treatment, evenif:

…death is not imminent but a patient’s coma isbeyond doubt irreversible and there are adequate safeguards to confirmthe accuracy of the diagnosis and with the concurrence of those whohave responsibility for the care of the patient…. Life-prolongingmedical treatment includes medication and artificially ortechnologically supplied respiration, nutrition and hydration.

There it was: Food and fluids provided by a feeding tube wereofficially deemed a medical treatment by the nation’s foremost medicalassociation, meaning that withdrawing them was deemed the same asturning off a respirator or stopping kidney dialysis.

As often happens in bioethics, once the medical intelligentsiareached consensus, their opinion quickly became law. Thus, in 1990, theSupreme 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-sustainingtreatment from a person, provided there was “clear and convincingevidence” that the person would not have wanted to live. Unfortunately,the Court also agreed that tube-supplied food and fluids is a form ofmedical treatment that can be withdrawn like any other form oftreatment. (This is often erroneously called the “right to die.”) Withthe seeming imprimatur of the Supreme Court, all 50 states soon passedstatutes permitting the withholding and withdrawal of tube-suppliedsustenance — even when the decision was made by a third party.

With that principle established, what did unconsciousness have to dowith it? Not a thing. It didn’t take long for the American MedicalAssociation to broaden the categories of dehydratable people. Thus, in1994, a brief eight years after its first ethics opinion classifyingtube feeding as medical treatment that could be withdrawn only when thepatient was “beyond doubt” permanently unconscious, the AMA proclaimedit “not unethical” to withdraw ANH “even if the patient is notterminally ill or permanently unconscious.” And that’s where the matterstands 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 seemsto me that given the certainty of death when denying a patientsustenance — and in light of the profound symbolism of refusing toprovide even nourishment — a different standard should apply when thirdparties seek to refuse tube-supplied food and water on behalf ofanother.

In such cases, medically inappropriate ANH — such as when theactively dying body can no longer assimilate sustenance — should beable to be refused as other forms of care. But when the decision is a value judgmentthat a person’s life isn’t worth living because of disability orperceived “quality of life,” then the decision to dehydrate should beconsiderably c
onstrained.

Which brings us back to poor Haleigh Poutre: Until and unless ANH isrecognized as a unique category of care to be governed by its own rulesfor determining when and whether sustenance can be withheld orwithdrawn, Haleigh remains very much at risk. After all, her doctorscould still conclude that she will not improve. They could stillrecommend to guardian Harry Spence that he withdraw her food and fluidslest she grow up profoundly disabled. Spence could still agree that anearly death is better than a longer disabled life and ask the courts tosanction her dehydration. The juvenile court could promptly hold a newhearing in which the judge would undoubtedly be told by a bevy of”expert witness” bioethicists that dehydrating this child to deathwould be ethical and morally appropriate even though she is conscious.The court could still order her to die slowly, over two weeks, ofdehydration despite her being awake and aware. And the supreme court ofMassachusetts could still give final approval to the decision. Such isthe sad state of medical ethics and the law in the United States ofAmerica.