For more than ten years, conscious and unconscious cognitively disabled people who use feeding tubes have been legally dehydrated to death in the United States. This intentional life-ending act—clamping feeding tubes and denying all sustenance—has become so ubiquitous that, generally, little attention is paid.
This public indifference was shattered by the Terri Schiavo litigation, an epic legal, political, and media struggle that pitted Terri’s parents, Bob and Mary Schindler, against her quasi-estranged husband, Michael Schiavo. At stake was whether Terri would live, as fervently desired by her parents, or die by dehydration as demanded by her husband. (I shall explain below why I consider Michael to be estranged from Terri.)
The Schiavo case is not the first “food and fluids” case, but it is certainly the most notorious. Widespread revulsion over Terri’s court-ordered dehydration sparked a grass-roots political campaign that culminated in the Florida legislature’s rushed passage of “Terri’s Law,” which empowered the governor to intervene and prevent some categories of cognitively disabled people from being dehydrated. As soon as the bill became law, Governor Jeb Bush dramatically halted Terri’s dehydration in its sixth day, setting off an international uproar. (As this is written the constitutionality of Terri’s law—and hence the fate of Terri Schiavo—is being litigated.)
At this point we must distinguish between two different circumstances in which nourishment is withheld from incapacitated patients:
• First, not forcing food and water upon dying patients who reject nourishment. This often occurs in the end stages of cancer. Indeed, it is recognized as medically inappropriate to force-feed patients whose bodies are shutting down during the natural dying process. In these cases, the patients die from their disease, not dehydration. This is not the situation that this article addresses.
• Second, withholding tube-supplied food and water from cognitively disabled persons like Terri who are not otherwise dying. In such cases, nourishment is withheld not for medical reasons but because someone believes that the patient’s life is not worth living in such an impaired state, or that he or she would rather be dead than live with a profound cognitive disability. Death in these situations is caused by dehydration.
If the owner of a horse or cow caused the animal to die by withholding food and water, he or she would probably go to jail, and rightly so. If a condemned murderer were executed by being shut in a room without food and water until he died, the American Civil Liberties Union would never stop suing, and rightly so. (Ironically, the ACLU has jumped into the Schiavo case—on Michael’s side, to have Terri’s Law declared unconstitutional.) But dehydrate a person with significant brain injury who requires a feeding tube, and it is considered medically ethical, the right to refuse unwanted medical treatment and an adjunct of the legally non-existent “right to die.”
A Potentially Painful Death
Advocates for dehydrating the neurologically disabled assert that it is a painless end. But there are substantial reasons for doubt. St. Louis neurologist Dr. William Burke told me:
A conscious person would feel it [dehydration] 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.
Minnesota neurologist Dr. Ronald Cranford, an avid supporter of dehydration, who has often appeared as an “expert witness” in litigation over withholding food and water, testified in the Robert Wendland case about the effect of dehydration on cognitively disabled patients:
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. . . .
Since the people to whom this is done generally can’t communicate, we mostly don’t know what they actually experience. But in at least one case we do: that of a young woman who had her tube feeding stopped for eight days and lived to tell the tale.
At age 33, Kate Adamson collapsed from a devastating stroke. She was diagnosed as likely to develop a persistent vegetative state (PVS) but was actually “locked in”—that is, she was completely awake and aware but unable to communicate. Even after the doctors realized that Adamson was entirely conscious, they urged her husband to “let her go.” He refused, and indeed, when she developed a bowel obstruction, he authorized surgery. However, to clean the bowel enough to permit surgery, her nourishment was stopped. When, eventually, she recovered her ability to communicate, she wrote Kate’s Journey: Triumph over Adversity. Appearing on The O’Reilly Factor, Adamson described the experience of being denied nourishment.
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.
In preparation for an article in the Daily Standard, I asked Adamson to provide more details about what she experienced while being deprived of tube-supplied nourishment. As an illustration, she told me that she was administered inadequate anesthesia during her bowel-obstruction surgery. Yet, as painful as that was, it was not as bad as the suffering caused by being denied nourishment:
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.”
Moreover, although Adamson was not deliberately dehydrated—she was constantly on an IV saline solution—she still had horrible thirst:
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 slake my desperate thirst.
Doctors who withhold nourishment and hydration with the purpose of causing death may prescribe morphine or other narcotics to alleviate the pain. But who knows whether this is sufficient? For example, when Cranford was asked during his Wendland testimony what level of morphine would have to be given to prevent the patient from suffering, he testified 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.” He added that he would probably put Robert Wendland back into a coma to ensure that he did not feel pain!
The Human “Non-Person”
Why do we tolerate such an apparently cruel method of life termination? First, it is an unfortunate by-product of the legal right to refuse unwanted medical treatment. Tube feeding is deemed medical treatment—rather than humane care that cannot be withdrawn—because a modest surgical procedure is required to insert the tube. Thus, even though there can only be one result—death—tube-supplied nourishment can be withdrawn like any other medical procedure. (Many people believe erroneously that there is a legal difference between “extraordinary care,” such as a respirator, which can be withheld, and “ordinary care,” such as tube feeding, which must be provided. The law recognizes no such distinction.)
Second, when a patient is incapacitated, decisions to accept or refuse medical treatment must be made by surrogates. This means that someone other than the patient will decide whether a cognitively disabled patient lives, or dies by dehydration.
The great Christian bioethics pioneer Paul Ramsey, author of the seminal book The Patient as a Person, worried presciently that surrogate decision making could endanger the lives of people who were seen as devalued. Thus, while Ramsey believed that people should be allowed to refuse treatment for themselves on a subjective quality-of-life basis, he urged that decisions made on behalf of others be strictly based on medical needs. Otherwise, he wrote, we could be shifting “the focus from whether treatments are beneficial to patients to whether patients’ lives are beneficial to them.”
If bioethics had adhered to the sanctity/equality of life ethic advocated by Ramsey, we would today have far fewer worries about the way cognitively disabled and frail elderly people are cared for in our nation’s hospitals and nursing homes. Unfortunately, the academic philosophers who now dominate bioethics shifted the predominant ideology of the field sharply away from the Ramsey approach and toward the “quality of life” ethic. This measures the moral value of human lives subjectively based on levels of cognitive capacity. Thus, most bioethicists today distinguish between “persons” and so-called human “non-persons,” people denigrated on the basis of their low level of cognitive functioning.
These invidious distinctions matter very much in the medical setting. Being categorized as a non-person is dangerous to life and limb, since most bioethicists assert that only persons are entitled to human rights. In the full expression of personhood theory, non-persons are killable, subject to the harvesting of their body parts, and candidates for non-therapeutic medical experiments.
A Tale of Three Patients
Space does not permit a full exposition of personhood theory and how it interacted with the growing importance of personal autonomy in medical decision-making to produce legislation and court decisions permitting the withdrawal of tube-supplied food and water from cognitively disabled people. Suffice it to say that while many observers continue to oppose, on moral grounds, removing tube-supplied food and water, the hard truth is that patients with serious cognitive incapacities—the conscious as well as the unconscious—are now routinely dehydrated to death in all fifty states.
Still, all is not yet lost. If close family members object to dehydrating a cognitively disabled person and are committed enough in their desire to save their loved one’s life to take the matter to court, dehydrations can be significantly delayed and sometimes even prevented. If the patient is unquestionably conscious, they may even win.
Three such litigations have made national headlines in recent years: the cases of Michael Martin (Michigan), Robert Wendland (California), and Terri Schiavo (Florida). All three involved bitter disputes between a spouse who wanted the disabled patient to die by dehydration versus parents/siblings who fought to maintain tube-supplied food and water. (Martin and Wendland were both uncontrovertibly conscious; while a judge ruled that Schiavo was PVS, the medical testimony was hotly disputed.)
Michael Martin: Martin suffered a severe brain injury in an auto accident. However, he recovered consciousness and improved to the point that he could apparently enjoy music and cartoons in the nursing home in which he was placed. Michael’s wife, Mary, wanted him to die by dehydration. But this plan was opposed by his mother, Pat Major, and sister, Leeta Martin, resulting in a protracted legal fight.
Mary claimed that Michael had repeatedly told her that he would not want to live if he were “a vegetable.” This testimony held great sway with the trial judge. Despite assertions from two doctors that Michael expressed a desire to live by answering yes and no questions on a therapeutic device, Michael’s feeding tube was ordered removed. This decision was affirmed by the Court of Appeals but overturned by the Michigan Supreme Court on the basis that Mary had not presented “clear and convincing evidence”—the highest level of proof that can be required in a civil case—that Michael would not want to live in his current condition.
Robert Wendland: After Wendland’s rollover auto accident, he was unconscious for 16 months with no expectation of recovery. But then, unexpectedly, he awakened. Soon, with therapy, he had learned to maneuver a wheelchair down a hospital corridor and could often perform simple tasks on request such as removing and replacing pegs in a board. At one point, he apparently learned to answer yes and no questions using a therapeutic device, in which the following discourse occurred:
Therapist: Is your name Michael?
Therapist: Is your name Robert?
Therapist: Do you want to die?
Wendland: No answer.
When Robert’s feeding tube became dislodged in July 1995, his wife, Rose, decided it should not be replaced, a decision unanimously affirmed by the Lodi Memorial Hospital Ethics Committee and the San Joaquin County Ombudsman. But an anonymous nurse was so appalled by the plan that she blew the whistle to one of Robert’s sisters, leading Robert’s mother, Florence Wendland, and a sister to sue to prevent the dehydration.
The bitter litigation lasted for nearly six years. The trial judge, clearly sympathetic to Rose’s cause (he claimed from the bench to be making the “wrong decision for the right reason”), ruled against the dehydration because she had not presented clear and convincing evidence that Robert would not want to live with a profound cognitive disabitlity. This was reversed by the Court of Appeals, which ruled shockingly, among other matters, that there is not a “presumption for continued existence in California law.” The California Supreme Court eventually came down in favor of preserving Robert’s life, deciding that when a patient is conscious—excluding people diagnosed with PVS—and the surrogate is a court-appointed conservator, constitutional issues require clear and convincing evidence to be presented that the patient would not want to live or that dehydration would be in the patient’s “best interests.” The ruling applied only to tube feeding and not other forms of life-sustaining medical treatment. (Unfortunately, Robert did not benefit from the ruling. He died of pneumonia shortly before the case was decided.)
Terri Schiavo: In 1990, when she was twenty-six, Terri Schiavo collapsed from unknown causes. Terri’s resulting cognitive disability left her less reactive than either Michael Martin or Robert Wendland, but its extent and potential for amelioration remains a matter of dispute. Several doctors testified that she is nonresponsive—in other words, PVS—a diagnosis strongly contested by other doctors, medical therapists, and her parents. Videos of Terri seem to indicate that she does sometimes interact with her environment, although those who claim she is not responsive contend that smiling at her mother and opening her eyes upon request were mere reflex actions.
In the first year or so after Terri became disabled, her husband, Michael, sought medical help for her, for example, bringing her to California for an experimental surgical procedure, which, however, provided no apparent benefit. Then in 1991 the health insurance money ran out and all rehabilitative therapy stopped. Then, thanks to a medical-malpractice verdict, Terri received $750,000, which was placed in a trust fund. During the trial, Michael promised the jury that he would use the money to care for Terri the rest of his life and provide her with appropriate medical testing and rehabilitation. He also informed the jury that Terri was expected to have a normal lifespan.
Once the money was in the bank, however, Michael did not provide Terri with any rehabilitation or therapy. He did not allow medical testing. He had a do-not-resuscitate order placed on her chart, so that doctors would not intervene if she had a cardiac arrest. And he denied Terri antibiotics when she suffered a bladder infection, leading to the Schindlers’ first lawsuit against him.
In 1998, Michael petitioned the court to allow him to have Terri’s feeding tube removed. Terri’s parents fought the request. When the smoke cleared, Judge George Greer of the Sixth Judicial Circuit, Clearwater, Florida, had found that Terri is PVS and that Michael had presented clear and convincing evidence that she would want to die. Judge Greer also refused to permit Terri to receive rehabilitation before her tube was removed, despite credible medical testimony that she might be able to relearn to take nourishment and water by mouth. The Florida Court of Appeals affirmed Judge Greer’s ruling. Terri’s dehydration began on October 15, 2003.
That would normally have been that. But Terri’s case has been anything but normal. Disability-rights activists, Christian conservatives, public-policy advocates (myself included), talk-radio hosts, and Internet bloggers launched an intense grass-roots political campaign to pressure Governor Bush to intervene. In an unprecedented outpouring, people from all over the country responded, sending Bush and other Florida politicians tens of thousands of e-mails, letters, and phone messages, culminating in Terri’s Law.
Having closely observed many food-and-fluids cases over the last ten years, I have noticed several patterns and themes that, I believe, tell us quite a lot about the state of our culture and, if you will, our national soul.
Personhood theory has successfully dehumanized the cognitively impaired: None of us should have to earn our personhood. Indeed, the foundational philosophy of our country, so eloquently expressed in Thomas Jefferson’s “self-evident” truths, holds that we all are equally possessed of inalienable rights, the first of which is the right to life. And while it is certainly true that the United States has too often failed to live up to the soaring ideals of our founding, at least we have struggled mightily and at great cost to overcome the vestiges of our unequal past and make the blessings of liberty available to all.
But with the coming of personhood theory, new categories of people are now the victims of discrimination and exploitation. This is epitomized by the popular use of the profoundly dehumanizing pejorative “vegetable” to describe cognitively disabled people. Once their moral worth has been reduced to that of a cucumber, it becomes easier to justify their killing.
These attitudes are especially dangerous in the medical setting. The medical profession has even picked up the common slur and given it a clinical sound—persistent vegetative state (PVS). Patients diagnosed as being permanently unconscious—PVS—can almost never be saved from dehydration once the primary caregiver decides to stop tube-supplied sustenance, even if close family members object. Moreover, there is serious advocacy at the highest levels of the medical intelligentsia for allowing doctors to refuse wanted treatment for such people on the basis of quality-of-life determinations. Some even urge that doctors be allowed to kill them for their organs.
The law, which should be especially vigilant in defending those who can’t defend themselves, instead generally reflects the dominant view in bioethics that relative value can be placed on human lives. In this milieu, the greater a patient’s capacities the more legal protection he or she receives. Thus, Robert Wendland and Michael Martin were spared dehydration despite “expert” bioethics testimony that they should “be allowed” to die precisely because they exhibited just enough cognition to make the high courts uncomfortable with terminating their lives. Had they been less responsive, it is unlikely that they would have been spared.
Proof of this concern can be found in the California Supreme Court’s Wendland decision, which established a two-tiered system of constitutional rights—one for the conscious and another for the unconscious—by explicitly excluding patients diagnosed with PVS from its protective terms. This led to the surreal ruling that Californians lose some of their constitutional rights if diagnosed with PVS, but then regain them if they unexpectedly awaken. Thus, despite its good news for conscious disabled people, Wendland is actually a very dangerous decision because it implicitly applies personhood theory to—and thus discriminates against—a specific class of born human beings.
Casual statements can become a dehydration warrant: Those who wish to dehydrate the cognitively disabled invariably claim that they are doing it for the patient—that they are doing what the patient said he or she would want done in the event of serious illness or incapacitation. Yet, because the benefit of the doubt in law and culture now tacks overwhelmingly in favor of death in these cases, it is shocking how often the most casual statements have been treated as if they had been carefully deliberated upon advanced medical information.
It has even gotten to the point that courts may hold disabled people to past statements that they would want to die over present indications that they want to live—as the trial judge in Michael Martin’s case did.
The worst of these cases of which I am aware is the tragic dehydration of Marjorie Nighbert. Marjorie was a successful businesswoman until a stroke left her disabled. She was unable to swallow safely, but not terminally ill. She was moved from Alabama to a nursing home in Florida where she would receive rehabilitation to help her relearn how to chew and swallow without danger of aspiration. A feeding tube was inserted to ensure that she was properly nourished during her recovery.
Marjorie had once told her brother Maynard that she didn’t want a feeding tube if she were terminally ill. Despite the fact that she was not dying, Maynard believed that she had meant that she would rather die by dehydration than live the rest of her life using a feeding tube. Accordingly, he ordered all of Marjorie’s nourishment stopped.
As she was slowly dehydrating to death, Marjorie began to beg the staff for food and water. Distraught nurses and staff members, not knowing what else to do, surreptitiously snuck her small amounts. One staffer—who was later fired for the deed—blew the whistle, leading to a hurried court investigation and a temporary restraining order requiring that Marjorie receive nourishment.
Circuit Court Judge Jere Tolton appointed attorney William F. Stone to represent Marjorie and gave him twenty-four hours to determine whether she was competent to rescind the general power of attorney she had given to Maynard before her stroke. After the rushed investigation, Stone was forced to report that Marjorie was not competent at that time. (She had, after all, been intentionally malnourished for several weeks.) Stone particularly noted that he had been unable to determine whether she had been competent at the time the dehydration commenced.
With Stone’s report in hand, Judge Tolton ruled that the dehydration should be completed! Before an appalled Stone could appeal, Marjorie died on April 6, 1995.
Conflicts of interest don’t matter in dehydration cases: Court-appointed guardians and conservators owe their wards the highest loyalty. As fiduciaries, they are duty-bound to serve their ward’s interest—even above their own. Needless to say, among other matters, this means that a guardian cannot personally benefit from financial decisions made while managing a ward’s money.
Life is more important than money. Surely, then, the legal prohibition preventing guardians from making monetary decisions when they have conflicts of interest should apply doubly when the guardians would personally benefit from their wards’ deaths. Unfortunately, in the food-and-fluids cases, judges have been generally indifferent to these considerations. Even in the face of clear conflicts of interest, judges have seldom been willing to transfer guardianships from those who seek court authority to dehydrate patients to parents or siblings who want their disabled loved ones to live.
In the Michael Martin litigation, Mary admitted that she had had romantic involvements after her husband’s injury. According to the terms of Michael’s pension benefits, she would receive substantial benefits if he died but not if they divorced. Yet the trial judge cared not a whit about this blatant conflict of interest when he acquiesced to Mary’s request and ordered Michael dehydrated. Even though the Michigan Supreme Court later saved Michael’s life, it did not address the conflict-of-interest aspect of the case.
Michael Schiavo’s financial and personal conflicts of interest make Mary Martin’s look penny-ante. In April of 1998, when he first asked to dehydrate Terri, she had more than $700,000 in her trust account, all of which Michael would have inherited had she died at that time. Indeed, this financial conflict of interest was one of the reasons that Terri’s guardian ad litem recommended that she not be dehydrated. (Michael claims there is now only about $50,000 left in Terri’s trust fund.)
Michael’s personal conflicts of interest are even more pronounced than his financial ones. Not only did he date regularly after Terri became disabled, but he fell in love and entered a committed relationship with a woman with whom he has lived since about 1996, siring two children by her. By starting a new family, Michael effectively estranged himself from Terri. Yet, none of this mattered to Judge Greer, who treated Michael as a loyal and committed husband rather than as a man who had moved on with his life and could benefit personally and financially from his wife’s death.
Re-humanizing Cognitively Disabled People
Utilitarian bioethicist Peter Singer has written that the food-and-fluids cases are a wrecking ball shattering the sanctity/equality-of-human-life ethic as the first principle of our culture. As much as I hate to admit it, he has a point. Still, to paraphrase Mark Twain, reports about the demise of our traditional human values are greatly exaggerated. The remarkable public outpouring in support of Terri Schiavo’s life proves that at least among the general public, the sanctity-of-life ethic retains much of its vitality.
This may show us a way out of our societal miasma. In my more optimistic moments, I see Terri’s sweet smile rallying us to reject the views of those who would force us each to earn our personhood by possessing sufficient cognitive capacities and to move instead toward a revitalized society in which every one of us is loved unconditionally as the fully equal and unequivocally human brother or sister that each of us really is. We can do this in the medical setting if we abide by the wisdom of Paul Ramsey and treat every patient “as a person.” The first step toward achieving this end is for us all to acknowledge: There is no such thing as a human vegetable.
The Human Life Foundation, Inc.
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