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Living in the Biotech Century

News, Resources, and Commentary

March 30, 2005



On making sure we ask the right questions about caring for the disabled...


How Liberalism Failed Terri Schiavo

by Eric Cohen


The question is not only what she would have wanted, but what we owe her.



“The story of Terri Schiavo is both peculiar in its details and paradigmatic in its meaning. The legal twists, political turns, and central characters are so odd that one hesitates to draw any broader conclusions. But the Schiavo case is also a tragic example of the moral and legal confusions that govern how we care for those who cannot speak for themselves, especially those whose lives might seem less than fully human. And so we have a responsibility to confront what has happened and why—especially if we are to understand our moral obligation as caregivers for incapacitated persons, and our civic obligation to protect those who lack the capacity to express their will but are still human, still living, and still deserving of equal protection under the law.


“In February 1990, a sudden loss of oxygen to the brain left Theresa Marie Schiavo in a coma and eventually in a profoundly incapacitated state. Terri’s husband, Michael Schiavo, took care of her, working alongside Terri’s parents. He took her to numerous doctors; he pursued experimental treatments; he sought at least some modest restoration of her self-awareness. In November 1992, he testified at a malpractice hearing that he would care for Terri for the rest of her life, that he ‘wouldn’t trade her for the world,’ that he was going to nursing school to become a better caregiver. He explicitly reaffirmed his marriage vow, ‘through sickness, in health.’


“But the lonely husband eventually began seeing other women. His frustration with his wife’s lack of improvement seemed to grow....


“For all the attention we have paid to the Schiavo case, we have asked many of the wrong questions, living as we do on the playing field of modern liberalism. We have asked whether she is really in a persistent vegetative state, instead of reflecting on what we owe people in a persistent vegetative state. We have asked what she would have wanted as a competent person imagining herself in such a condition, instead of asking what we owe the person who is now with us, a person who can no longer speak for herself, a person entrusted to the care of her family and the protection of her society....”


Ethics and Public Policy Center – Posted March 25, 2005




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“Choice”—the link between the Schiavo Case and Roe v Wade...


The Politics of the Schiavo Case

by Jeffrey Bell & Frank Cannon


Losing the battle, winning the war



“In her 1993 novel The Children of Men, P.D. James depicts the world of 2021. A mysterious infection has rendered humanity infertile—the last baby is believed to have been born in 1995—yet British authorities move forward with their program of ‘voluntary’ euthanasia for the elderly and others who cannot meet society’s standards for ‘quality of life.’ The euthanasia program, called the Quietus, involves an inspirational, music-accompanied mass march into the sea, and is depicted by the authorities as pleasant, gentle, even euphoric. But a single old woman changes her mind at the last minute, and has to be clubbed to death.


“The starvation/dehydration of Terri Schiavo at the command of her husband does not bring us to that stage of social development. The blessing of his decision by federal and state courts, over the objection of the legislative and executive branches of government in Washington and Florida, is the upholding of a private killing for private purposes, not of government-sponsored mass killing. But the national scope of the controversy means that perhaps tens of thousands of feeding tubes all over the country have become far more precarious.


“It was a substantive policy victory for forces opposed to the right to life (it doesn’t seem accurate, in this instance, to describe these forces as ‘pro-choice’), but it may be a victory they come to regret. For one thing, in content it was far more an extension of the implications of legalized abortion than of assisted suicide.


“Of the whole array of anti-life agenda items, assisted suicide receives the greatest level of support in public opinion polling, undoubtedly because it is seen as the least coercive. But in the end game of the Terri Schiavo case, the longstanding assertion by her husband that Terri would welcome what was being done to her seemed at most a formality. The courts all but made explicit that the killing was not really about her wishes but only about those of her husband and legal guardian. The implication that Terri’s fate was to be the choice of the husband, and of him alone, followed the form of abortion law, which puts the choice in the hands of the mother, and of no one else....”


The Weekly Standard – April 4, 2005


Assessing the danger of “weighing the relative values of individual lives”...


The Strange Death of the Liberal West

by Mark Steyn



“...America this Holy Week is following the frenzied efforts to halt the court-enforced starvation of a brain-damaged woman for no reason other than that her continued existence is an inconvenience to her husband. In Britain, two doctors escape prosecution for aborting an otherwise healthy baby with a treatable cleft palate because the authorities are satisfied they acted ‘in good faith’. You can read similar stories in almost any corner of the developed world, except perhaps the Netherlands, where discretionary euthanasia is so advanced it’s news if the kid makes it out of the maternity ward. As the New York Times reported the other day: ‘Babies born into what is certain to be a brief life of grievous suffering should have their lives ended by physicians under strict guidelines, according to two doctors in the Netherlands.


“‘The doctors, Eduard Verhagen and Pieter J. J. Sauer of the University Medical Center in Groningen, in an essay in today’s New England Journal of Medicine, said they had developed guidelines, known as the Groningen protocol.’


“Ah, the protocols of the elders of science. Odd the way scientists have such little regard for scientific progress. It’s highly likely that many birth defects—not just the bilateral cleft lips—will be treatable and correctible in the next decade or two. But once you start weighing the relative values of individual lives, there’s no end to it. Much of that derives from the way abortion has redefined life—as a ‘choice’, an option.


“In practice, a culture that thinks Terri Schiavo’s life in Florida or the cleft-lipped baby’s in Herefordshire has no value winds up ascribing no value to life in general....”


The Daily Telegraph – March 22, 2005


Examining the bioethics behind the politics of the Schiavo case...


A Regrettable Limit on Life

by John Leo



John Leo, columnist and contributing editor, U.S. News & World Report

“Think of the Terri Schiavo case as another red-versus-blue issue. Congress, Republican-dominated and therefore mostly red, asked the federal courts to take a fresh look. The federal judiciary, in its customary imperial blue, contemptuously told Congress to take a hike. It wouldn’t delay the execution for even a few days. For that, you need to be a convicted cop killer.


“Color the mainstream media blue. Photos of pro-lifers usually show people who seem to be unbalanced, waving Bibles, rolling their eyes crazily—right out of the playbook for antiabortion coverage. The nearly identical headlines in several papers saying, ‘How the Personal Became the Political,’ reflect a media consensus that the antideath side is intruding where it doesn’t belong.... Disability-rights activists are an important constituency defending Schiavo’s right to live, but since journalists cannot afford to depict them as unbalanced or foolish, they have been rendered almost invisible.


“The underlying red-blue issue involves the current state of bioethics. Many of the founders of this relatively new field were religiously motivated. Daniel Callahan, a former colleague of mine at the Catholic magazine Commonweal, cofounded the Hastings Center. Sargent Shriver and the Kennedy family launched the Kennedy Institute of Ethics at Georgetown University. But the bioethics world turned rigorously secular and veered sharply to the blue section of the color spectrum. A key factor in the rise of bioethics, Callahan wrote, was the ‘emergence ideologically of a form of bioethics that dovetailed nicely with the reigning political liberalism of the educated classes in America.’ Instead of the traditional emphasis on the sanctity of life, bioethics began to stress the quality of life, meaning that many damaged humans, young and old, don’t qualify for personhood because their lives have lost value. The nonpersons should be allowed to die and in some cases be killed. This explains why so few bioethicists have protested what the state and her husband planned for Terri Schiavo, who is severely damaged, but not in pain or dying, not brain dead, and in no position to protest her own execution on grounds that other people consider it best for her.


“Bioethics has hardened into an activist ideology that pervades the medical world, the schools, and government....


“Pushing the culture toward outcomes previously considered immoral is routine in bioethics. The Rev. Richard Neuhaus, editor-in-chief of the nation’s best religious journal (First Things), wrote, ‘Thousands of ethicists and bioethicists, as they are called, professionally guide the unthinkable on its passage through the debatable on its way to becoming the justifiable, until it is finally established as the unexceptional.....’” – April 4, 2005


“A basic test of this country’s decency...”


Bigotry and the Murder of Terri Schiavo

by Joe Ford


Misery can only be removed from the world by painless extermination of the miserable.”—a Nazi writer quoted by Robert J. Lifton in The Nazi Doctors: Medical Killing and the Psychology of Genocide



“The case of Terri Schiavo has been framed by the media as the battle between the ‘right to die’ and pro-life groups, with the latter often referred to as ‘right-wing Christians.’ Little attention has been paid to the more than twenty major disability rights organizations firmly supporting Schiavo’s right to nutrition and hydration. Terri Schindler-Schiavo, a severely disabled woman, is being starved and dehydrated to death in the name of supposed ‘dignity.’ Polls show that most Americans believe that her death is a private matter and that her removal from a feeding tube—a low-tech, simple and inexpensive device used to feed many sick and disabled people—is a reasonable solution to the conflict between her husband and her parents over her right to life.


“The reason for this public support of removal from ordinary sustenance, I believe, is not that most people understand or care about Terri Schiavo. Like many others with disabilities, I believe that the American public, to one degree or another, holds that disabled people are better off dead. To put it in a simpler way, many Americans are bigots. A close examination of the facts of the Schiavo case reveals not a case of difficult decisions but a basic test of this country’s decency.


“Our country has learned that we cannot judge people on the basis of minority status, but for some reason we have not erased our prejudice against disability. One insidious form of this bias is to distinguish cognitively disabled persons from persons whose disabilities are ‘just’ physical. Cognitively disabled people are shown a manifest lack of respect in daily life, as well. This has gotten so perturbing to me that when I fly, I try to wear my Harvard t-shirt so I can ‘pass’ as a person without cognitive disability. (I have severe cerebral palsy, the result of being deprived of oxygen at birth. While some people with cerebral palsy do have cognitive disability, my articulation difference and atypical muscle tone are automatically associated with cognitive disability in the minds of some people.)


“The result of this disrespect is the devaluation of lives of people like Terri Schiavo. In the Schiavo case and others like it, non-disabled decision makers assert that the disabled person should die because he or she—ordinarily a person who had little or no experience with disability before acquiring one—‘would not want to live like this.’ In the Schiavo case, the family is forced to argue that Terri should be kept alive because she might ‘get better’—that is, might be able to regain or to communicate her cognitive processes. The mere assertion that disability (particularly cognitive disability, sometimes called ‘mental retardation’) is present seems to provide ample proof that death is desirable....”


The Harvard Crimson Online – March 25, 2005


Making the case that you cannot “let die” a person who is not dying...


Ethics & Life’s Ending:  An Exchange

Robert D. Orr & Gilbert Meilaender


From the comments of Gilbert Meilaender:



“At least for Christians—though, in truth, also much more generally for our civilization’s received medical tradition—we begin with what is forbidden. We should never aim at the death of a sick or dying person. (Hence, euthanasia, however good the motive, is forbidden.) Still, there are times when treatment may rightly be withheld or withdrawn, even though the patient may then die more quickly than would otherwise have been the case. How can that be? How can it be that, as a result of our decision, the patient dies more quickly, yet we do not aim at his death?


“This is quite possible—and permissible—so long as we aim to dispense with the treatment, not the life. No one need live in a way that seeks to ensure the longest possible life. (Were that a moral requirement, think of all the careers that would have to be prohibited.) There may be many circumstances in which we foresee that decisions we make may shorten our life, but we do not suppose that in so deciding we are aiming at death or formulating a plan of action that deliberately embraces death as a good. So in medical treatment decisions the question we need to answer is this: Under what circumstances may we rightly refuse a life-prolonging treatment without supposing that, in making this decision, we are doing the forbidden deed of choosing or aiming at death...?


“Against that background, we can consider the use of feeding tubes for patients in a persistent vegetative state. (I set aside here the point I noted above—that we might want to regard feeding simply as standard nursing care rather than as medical treatment. Now we are asking whether, even on the grounds that govern treatment decisions, we have good moral reason not to feed patients in a persistent vegetative state.)


“Is the treatment useless? Not, let us be clear, is the life a useless one to have, but is the treatment useless? As Dr. Orr notes—quite rightly, I think—patients ‘can live in this permanent vegetative state for many years.’ So feeding may preserve for years the life of this living human being. Are we certain we want to call that useless? We are, of course, tempted to say that, in deciding not to feed, we are simply withdrawing treatment and letting these patients die. Yet, as Dr. Orr also notes, these patients ‘are not clearly dying.’ And, despite the sloppy way we sometimes talk about these matters, you cannot ‘let die’ a person who is not dying. It is hard, therefore, to make the case for treatment withdrawal in these cases on the ground of uselessness. We may use those words, but it is more likely that our target is a (supposed) useless life and not a useless treatment. And if that is our aim, we had better rethink it promptly....”


Robert D. Orr, M.D. is the Director of Ethics for Fletcher Allen Health Care and Professor of Family Medicine at the University of Vermont College of Medicine.


Gilbert Meilaender is a member of the President’s Council on Bioethics. The views expressed here are his own and do not represent the Council.


First Things - August/September 2004  (Please note that Gilbert Meilaender’s article is located halfway down the page.)


Philosophy, law, and ethics at the end of life...


“Always to Care, Never to Kill”


Terri Schiavo and the right to life



Q&A by National Review Online Staff



National Review Online recently had a chance to talk to Robert P. George, the McCormick professor of jurisprudence at Princeton University and a member of the President’s Council on Bioethics, about the Terri Schiavo case and the broader issue of assisted suicide. Professor George has published widely on law, ethics, and philosophy in books, scholarly journals, and, too rarely, in articles for NRO. He previously served as a presidential appointee to the U.S. Commission on Civil Rights.


National Review Online:  How should we go about thinking about the circumstances under which it is morally permissible to refuse medical treatment? What principles ought to guide us?


Robert P. George:  From a moral vantage point, it can be, though it will not always be, permissible to decline treatment — even potentially life-saving treatment — when one’s reason for declining the treatment is something other than the belief that one’s life, or the life of the person for whom one is making a decision, lacks sufficient value to be worth living. What we must avoid, always and everywhere, is yielding to the temptation to regard some human lives, or the lives of human beings in certain conditions, as lebensunwerten Lebens, lives unworthy of life. Since the life of every human being has inherent worth and dignity, there is no valid category of lebensunwerten Lebens. Any society that supposes that there is such a category has deeply morally compromised itself. As Leon Kass recently reminded us in a powerful address at the Holocaust Museum, it was supposedly enlightened and progressive German academics and medical people who put their nation on the road to shame more than a decade before the Nazis rose to power by promoting a doctrine of eugenics based precisely on the proposition that the lives of some human beings—such as the severely retarded—are unworthy of life....”


National Review Online – March 21, 2005


Assessing the moral and cultural significance of the Schiavo tragedy...


Terri Schiavo—Enduring Questions

by R. Albert Mohler, Jr.



“Even as Terri Schiavo edges closer and closer to death, the questions posed by this tragedy represent long-term challenges for this culture and its moral conscience.


“These questions will not go away, even as the headlines and media attention inevitably subside. Issues of life and death confront us all, and the court-mandated death of Terri Schiavo will, I believe, go down as a landmark on America’s moral landscape. Her death will either lead to a recovery of moral sanity or a further slide into a moral abyss. Several vexing questions frame where this culture is headed.


First, what does this mean for the culture? Without doubt, the case of Terri Schiavo has exposed a massive moral cleavage in American culture. The ‘culture war’ that has divided America over the last four decades will inevitably frame how issues of life and death are settled in law, medicine, and moral habit....


Second, what does this mean for the future? Every significant moral precedent leads to the formation of new moral habits and the framing of new moral issues. By now, we should all realize that the case of Terri Schiavo is, in its essence, neither unprecedented nor uncommon. Decisions about life and death are being made in hospices, hospitals, and courtrooms all over America. Where is all this headed? The signs are ominous....


Third, what does this mean for the courts? Without doubt, the courts have failed Terri Schiavo. Charged with upholding due process rights and equal protection for all citizens, a succession of courts—both state and federal—failed Terri Schiavo by accepting debatable assertions presented by compromised agents, and by refusing to consider the more fundamental issues at stake....


Fourth, what does this mean for conservatism? The conservative movement is not monolithic, and that reality has been brought clearly to public attention as the controversy over Terri Schiavo has unfolded. Conservatives come in several flavors, and the conservative movement includes social conservatives primarily driven by moral conviction and worldview concerns, libertarians primarily concerned with limiting the power of the state and expanding the power of the individual, and fiscal conservatives who are primarily driven by economic concerns and a desire to limit government and expand the private sector....”


R. Albert Mohler, Jr. is president of The Southern Baptist Theological Seminary in Louisville, Kentucky.


Albert Mohler Weblog – March 29 and 30, 2005.  “Enduring Questions” is a two-part weblog.  Please scroll down to begin Part One, which was posted on March 29.


Worth considering...


From “About Sacrifice”

by G. K. Chesterton



“...I still think Human Sacrifice is infinitely more decent and dignified than some scientific operations posed at the present time.  At least Human Sacrifice is human; a great deal more human than humanitarianism.  And when modern medical men gravely get up and propose that human beings should be put in lethal chambers, when there is any reason to fancy that they are tired of life, I am still (relatively) prepared to cry:  ‘Give me Moloch and the cannibals.’


“First consider the fundamental point:  that the pagan altar at least treated a man’s life as something valuable, while the lethal chamber treats a man’s life as something valueless.  A man’s life was offered to the gods because it was valuable; more valuable than the best bull or the finest ram, or the choice things from the flocks and herds which were always chosen because they were choice.  But the moderns, who do not believe in the existence of gods, tend at last not to believe even in the existence of men.  Being scientific evolutionists, they cannot tell the difference between a man and a sheep.  And being highly civilized townsmen, they would probably be very bad judges of the difference between a good sheep and a bad one.  Therefore, there is in their sacrificial operations a sort of scornful and indifferent quality contrary to the idea of sacrifice, even at its blackest and bloodiest.  They are always talking about eliminating the unfit, getting rid of the surplus population, segregating the feeble-minded, or destroying the hopeless; and this gives all their work a character of contempt.  Now, in the very vilest blood-rites of barbarians, there may have been cruelty, but there was not contempt....


“...Human Sacrifice had this great though fallen spendour clinging about it; that at least it was the very contrary of the Survival of the Fittest.  Like all the deaths of the martyrs and the heroes, it was the Surrender of the Fittest.  The scientific destroyers necessarily talk in the opposite terms and spread the opposite tone.  They sacrifice the black sheep of the flock; the mad bull of the herd; the unfortunates of the human community whom they choose to regard as mad or merely as weak-minded.  They do not merely kill, but annihilate; not only in the sense of reducing people to nothing, but even of regarding them as nobodies.  The sacrificial victim was always regarded as something; he was even respected as somebody....


“...Even the public executions, now conventionally condemned, had this sort of wild justice about them:  that they did not deprive the chief actor of the limelight.  But the new death-ray of scientific destruction would not pick out personalities and individuals as does the limelight.  And there is danger that the very fact of dealing with lives that are supposed to be futile or featureless or merely uncomfortable and unpleasant, instead of with great crimes or blasphemies, may bring into the business a spirit which is worse than merely cruel; because it is merely callous....


“Speaking seriously, of course, most human sacrifice tends to be inhuman, because it tends to be diabolist.  The line is not always drawn at first, or drawn easily, between a somewhat dark and ruthless deity and an actual demon.  But one thing at least we may learn from the real history of the world, and that is how to avoid a blunder made by more than half the histories in the world.  Whatever else is true, it is not true that blood-rites belong entirely to prehistoric or even primitive peoples.  The progressive historians, of a school no longer very obviously progressing, did their very best to hint and imply that complex civilization is a complete safeguard against unnatural creeds or cruel ceremonies.  It is nothing of the kind.  Some of the most civilized and highly organized cultures, like Carthage at its wealthiest, had human sacrifice at its worst.  Culture, like science, is no protection against demons....”


As I was Saying, by G. K. Chesterton (Books for Libraries press, Inc., 1936), pp. 217-218, 219, 220, 222.




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