The Quality of Life: Who's the Judge?
by Richard M. Doerflinger
No ethical questions are more timely or controversial than those involving human life. Some scientists, ethicists and public officials think they are advancing human knowledge by pinpointing the factors required for an acceptable "quality of life"—a life worth living. When they encounter ordinary people lives they see as having low "quality," the results can be revealing.
In December 1994 the Director of the National Institutes of Health met with his top advisors to decide whether to use federal funds for experiments on live human embryos. One experiment of great interest to the group was a genetic testing technique known as preimplantation genetic diagnosis. A couple at risk of having a child with Down syndrome, cystic fibrosis or other genetic defect can reproduce using in vitro fertilization—having sperm and egg combined to produce an embryo in the laboratory—so the embryo can be tested before implantation in the womb, and discarded if found "defective."
The NIH advisors saw this as a new breakthrough in preventing the birth of handicapped offspring. But an expert on cystic fibrosis reported that to her surprise, families with a child who has this illness have an "underwhelming" reaction to it. One parent told her that using the technique to eliminate future offspring with cystic fibrosis would be "like saying I wish little Johnny didn't exist, and I don't [wish that]."
Some judges have also tried to help improve the human condition by eliminating certain humans. In 1993, in a case involving "suicide doctor" Jack Kevorkian, Judge Richard Kaufman of Michigan decided to define a new constitutional right to assisted suicide. However, at first he could not find a legal precedent for the idea that the state's interest in human life depends on the "quality" of life. Finally he found a U.S. Supreme Court ruling from 1924 that gave him just what he needed. That case was Buck v. Bell—an old and long-discredited ruling influenced by the American eugenics movement of the 1920s. In that case, the Supreme Court upheld a Virginia law providing for the involuntary sterilization of women considered "feeble-minded." When the Nazis established their own eugenics laws in 1937, they quoted Justice Oliver Wendell Holmes' majority opinion in Buck v. Bell: "It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve them for their imbecility, society can prevent those who are manifestly unfit from continuing their kind." Claiming that genetically inferior people "sap the strength of the state," Holmes authorized the sterilization of young Carrie Buck with the notorious one-liner: "Three generations of imbeciles are enough."
When groups representing people with disabilities read Kaufman's decision and realized what he was relying on, they were outraged. His decision was later reversed by the Michigan Supreme Court.
Some professors of ethics have also been exploring a division of humanity into the valuable and the valueless. Australian ethicist Peter Singer recently received much favorable attention for his new book, Rethinking Life and Death: The Collapse of Our Traditional Ethics. In 1983 Singer proposed letting newborn infants with Down Syndrome starve to death. "If we compare a severely defective human infant with a nonhuman animal, a dog or a pig, for example, we will often find the nonhuman to have superior capacities, both actual and potential, for rationality, self-consciousness, communication, and anything else that can plausibly be considered morally significant," he wrote. His new book goes further, launching a full-scale attack on the Judeo-Christian idea of the sanctity of life. He replaces that old "incoherent" ethic with a new set of "commandments," one of which is: "All human life is not of equal worth."
In Germany, people with disabilities have responded to Singer's writings by disrupting some of his lectures and convincing sponsors to cancel others. They say his ideas resemble those of the Nazis. He and his allies are astonished by this charge, because they see themselves as very enlightened and progressive thinkers.
The culmination of these "quality of life" ideas can be found in recent rulings on assisted suicide by two federal courts. In March 1996, the Ninth Circuit Court of Appeals in San Francisco ruled that seriously ill patients have a constitutional "right" to receive lethal drugs so they can commit suicide. In April, the Second Circuit Court of Appeals in New York ruled that laws against assisted suicide for such patients "are not rationally related to any legitimate state interest."
Though defended in terms of individual freedom, the heart of both rulings is a demeaning and dismissive view of the value of sick and disabled people's lives. The Ninth Circuit ruling declares that "the state has a legitimate interest in preventing suicides in general," and that "suicide by teenagers and young adults is especially tragic"—but it finds no reason to prevent suicide among sick people who cannot be restored to "a state of physical and mental well-being." The court even compares its sliding scale for the value of life with an earlier scale used to judge life in the womb: The state's interest in protecting life against attack "may differ at different points along the life cycle as a person's physical or medical condition deteriorates, just as in abortion cases the permissibility of restrictive state legislation may vary with the progression of the pregnancy."
In other words, young and able-bodied people can still be prevented from killing themselves because their lives have objective worth. However, when a sick or elderly person has the same suicidal impulse, the state will allow others to assist the suicide because it agrees that this person's life is truly worthless.
Throwbacks to eugenics, dismissive views about people with disabilities, even Nazi ideas—all are now being presented as the "cutting edge" of legal and ethical thought.
Enter Pope John Paul II with his recent encyclical Evangelium Vitae, The Gospel of Life. Some Americans have complained that the Pope has a pessimistic view of the modern world, speaking as he does of a growing "culture of death" that threatens the weakest and most vulnerable members of the human family. But with the evidence recounted above, can anyone doubt that the culture of death is real and growing?
How is it that, just as our technological ability to serve human life is greater than ever before, we have lost any sense of whether to use this technology to care or to kill?
John Paul II says technical progress has made possible "new forms of attacks on the dignity of the human being" as well as new forms of assistance. He even speaks of a new "Promethean attitude" (Evangelium Viate [EV], 15) which helps make possible "a war of the powerful against the weak" (no. 12).
Modern technology (or a misplaced reliance on technology) has fed this war against the weak in two ways, which may seem contradictory at first glance.
First, technological progress has invited us to imagine that human knowledge and will can solve any problem and control any situation. It has tempted us to think of ourselves as gods. (Some, like Peter Singer, are even handing down "commandments.") At the same time, the technological view of the world is increasingly applied to human beings in their physical reality. The body is being reduced to "pure materiality," to "simply a complex of organs, functions and energies to be used according to the sole criteria of pleasure and efficiency" (EV, no. 23). The person is freed from all restraints on personal freedom— and at the same time is reduced to an object.
If only mind and will truly count, and the body is a mere object, it follows that those who have strong intellects and wills need not hesitate to manipulate and even kill less intelligent or less "productive" humans for the greater good.
If you think this overstates what is happening in our society, read Peter Singer—or his ally Ronald Green, the chief ethicist advising the NIH on the human embryo experiments mentioned earlier. Both of them speak of a "Copernican revolution" in thinking about life and death, in which the intelligent and articulate members of a society should vote on whether other members of the species deserve "personhood." This judgment should be based on enlightened self-interest: Would a vote to grant personhood benefit the rest of us, or harm us (e.g., by preventing us from doing lethal experiments on this human that could add to our medical knowledge)? Green openly says that his theory should be applied to humans after as well as before birth—yet it was accepted by a 19-member NIH panel without a dissenting voice.
Where does a solution lie?
The Holy Father sets out a powerful intellectual case on the need to respect all human life, regardless of its age or condition. He points out that life is our first and greatest gift from God, on which every other gift and every other right depends. If we fail to uphold this gift for everyone, we will descend into a bottomless abyss of discrimination, in which the strong make self-serving decisions about whether the weak deserve to live.
At the same time, it is also clear that more individuals and families with disabled members are needed to expose experts' ideas about "quality of life" for what they really are: either misplaced compassion or arrogant attacks on people who need our help and support.
One of our more refreshing modern theologians, Stanley Hauerwas, takes this down-to-earth approach. He says he is immune to some modern abstractions on the value of life because of his experience as the father of a child with Down Syndrome. One of his essays on care of the dying is titled, "My Uncle Charlie Is Not Much of a Person But He Is Still My Uncle Charlie." Cutting through much of the nonsense that passes for moral reasoning today, Hauerwas places these matters in a human context: The people in our families have been given to us, and they depend on us to stand with them no matter what. We are not dealing here only with "life" in the abstract, but with human relationships—with fidelity to those who need us.
This theme of fidelity is at the heart of the U.S. Catholic Bishops' pastoral statement released in September 1995, Faithful for Life: A Moral Reflection. It deals with abortion and euthanasia in a new way: Not only as violations of an individual's right to life, but as the abandoning of the very young, very sick and very old who depend on us:
It is for good reason that many find the roots of this disdain for life in the breakdown of the family. The family has a special role to play throughout the life of its members . . . The family is the first haven where those who are dependent—by being too young or too old, too disabled or too sick to care for themselves—find their closest and surest support. For this reason it can be called the "sanctuary of life" (Evangelium Vitae). At the heart of this sanctuary is fidelity—unwavering loyalty both to those we choose and to those who have been given to us. The unraveling of that fidelity in our time leaves dependents to become lawful victims of their guardians.
The bishops note that the same shift toward individualism and away from faithfulness has affected marriage and divorce: "Men and women find it increasingly difficult to make permanent commitments to each other." And they see in this shift an enormous danger to helpless members of society:
When a people lose confidence in fidelity between husbands and wives, it is an easy leap to imagine that other fidelities—of parents to children, and of adult children to their elder parents—no longer need to be permanent, for-better-or-for-worse obligations. When a family lives in fidelity it is a place of refuge and dignity, a place where each member is accepted, respected and honored precisely because he or she is a person; and if any member is in greater need, the care which he or she receives is all the more intense and attentive (Evangelium Vitae, 92). If it becomes each one only for himself or herself, then instead of being the source, school and standard for fidelity to neighbor, the family can become the scene of its harshest violations. The home becomes the place where, when you knock, they no longer have to let you in.
In contrast to a life of self-indulgence, the bishops call us to more demanding but richer lives of community and solidarity:
Many of the critical moments in our lives require that we rise to meet responsibilities given to us, not chosen by us. This is true of our obligation to be stewards of the world's resources. It is equally true of the obligations which bind us in love to our families. We are bound to our children, not because we chose them, but because we were given them: simply because they are our children, our very near neighbors. . . .
To live in fidelity we have to rearrange our lives, yield control, and forfeit some choices. To evade the full burden of putting ourselves at the disposal of those we belong to, to allot them only the slack in our own agendas and not what they require, is to practice desertion by other means.
The bishops pose a direct challenge to the American obsession with "freedom of choice." In a land of unlimited choice, regardless of the nature of the choice, the aggressive and strong-willed prevail and those who cannot speak for themselves are disposable. It is a land of "autonomy" in the fullest sense—from "auto" (self) and "nomos" (law). Each individual makes his or her own laws—and those with the loudest voices get to make laws for others, handing down "commandments" for ridding ourselves of unproductive people.
In such a land, nothing is more offensive than the idea that some realities and some obligations—like obligations to our children, our parents and other loved ones—are simply given to us, to cope with as best we can. This is the ultimate reminder that we are not God. But recognizing such bonds is also the only way for us to become fully human—for we grow and flourish when we give ourselves to those who need us most. When we violently break these bonds of fidelity, thinking that it will make us more free, we really make ourselves shrivel up and die as persons.
We need people who depend on us for their very lives; for our own life comes to fulfillment in what the Holy Father calls "the sincere gift of self" (Evangelium Vitae, 25). Any parent of a child with disabilities, indeed any parent, will admit that this gift of self can be difficult and painful. No one should sugarcoat this reality: the way to resurrection lies along the way of the cross.
This way means refusing some easy "quick fixes" our society seems increasingly willing to offer so we can escape our responsibilities. When others recommend eliminating our loved ones who are suffering, our way requires genuine "com-passion," "suffering with" people with illnesses and disabilities.
As Christians, we must promote this fierce fidelity to the helpless throughout our society. All men and women are our brothers and sisters; anyone in need who comes across our path is our neighbor. We must begin with our own families, with those most directly given into our care. And we must teach the rest of society by embodying this faithfulness in our own lives.
Those who judge the value of human lives by their "quality" forget that weakness and dependency are appeals to care and support on the part of those with greater mental and physical gifts. They equally forget that the "quality" of our own lives depends on our becoming mature enough to set our interests aside to serve those most in need. Only by serving those who are helpless will we build what the Holy Father has called a civilization of truth and love—the truth that we belong to one another, and the love that finally conquers death.
Mr. Doerflinger is associate director for policy development, NCCB Secretariat for Pro-Life Activities, and editor of Life at Risk: A Chronicle of Euthanasia Trends in America. He has a master's degree in divinity from the University of Chicago and is a nationally recognized expert on end-of-life issues.