Second of three parts; (click here to read part 1)
Pellegrino has followed the legalization of PAS in the Netherlands because he sees it as a "living laboratory of what happens when a society accepts the legitimacy of PAS. You've got direct, empirical evidence." And there Pellegrino has found that "the reports of the Dutch government and the Dutch Medical Society provide ample evidence that the slippery slope is no myth but a reality."
In its Remmelink report, the Dutch government documented that 1,000 persons were killed without giving consent in what was supposed to be a "voluntary" program. And "there is nothing in the second Dutch report [released in 1995] to suggest that this is not still occurring." In fact, the second report explained that the eligibility for PAS had been extended from terminally ill patients to include children, severely depressed patients, and elderly persons who weren't satisfied with the quality of their lives.
"The Netherlands experience shows that euthanasia cannot be contained by regulation and that most advocates reason that it would be 'merciful' to extend it here and there in individual cases," Pellegrino explains. "Any time we deem any human life as of unacceptable quality—the infant with cerebral damage, the retarded, the chronically and terminally ill—we make that life a target for 'merciful destruction' and accelerate the slide down the slippery slope to involuntary euthanasia."
A particularly chilling example of such "desensitization" exhibited itself when Pellegrino talked with a physician from the Netherlands. "How does it feel to do euthanasia?" he asked the euthanasiast.
"It's hard the first time," the doctor responded.
The lawyer: Advocate for the disabled
When Robert Destro went to work for the Catholic League for Religious and Civil Rights, he began focusing almost full-time on cases involving treatment given to the disabled. One in particular jolted his conscience. A young California boy with Down syndrome needed a heart operation, but the boy's father wanted to withhold treatment. Why fix the heart valve? the father asked. The boy was retarded.
Destro was outraged. "Are we going to stand by and watch this child die of medical neglect simply because he's retarded?" he asked.
Unbelievably, the state of California sided with the boy's father. Destro was shaken by the "amazing ignorance with respect to the reality of people who live with disabilities.
"From that moment on, I could see the progression of cases coming," Destro remembers.
The issue for Destro has always been "On what grounds will we deny basic rights to people with disabilities?"
In the Baby Doe case, the answer was couched in euphemisms such as "parental rights." But it was obvious to Destro that such arguments "always seem to favor the people who are young, beautiful, and flawless. Euphemisms provide cover for behavior which is not yet socially acceptable. It would not be socially or politically correct to argue that parents have a right to starve or deny necessary treatment to a child simply because he or she is retarded or has a physical disability, so they avoid the issue. 'Parental rights' is as good a cover as any."
What concerns Destro is the acceptance of a "hierarchy of disabilities," with mental disabilities at the bottom, and blindness and deafness at the top. The latter are seen as severe inconveniences, but the former are too often perceived as rendering the person who has them less "dignified" simply because they are dependent upon others for their care. The Australian bioethicist Peter Singer went so far as to question the humanity of the mentally disabled, arguing that since dogs and pigs are more intelligent than newborn babies, infanticide should be permitted whenever it is clear that the baby will never function as a "full" ("Whatever that means," Destro adds) human being.
If we allow inhumane treatment to begin anywhere in this hierarchy, Destro fears, we will become unable to draw any line at all. "Disabilities are tangible things—they inhibit a person's ability to do certain things—but a disability doesn't make them any less a person or any less a member of the community who is entitled to the same protection under the law as you or I."
It's ironic, Destro notes, that at the same time our federal government was passing the Americans with Disabilities Act and state legislatures all over the country were recognizing that persons with disabilities are full members of the community, the courts began taking the position that certain persons with disabilities are not worth keeping alive. The trend began in earnest when people in persistent vegetative states—such as Karen Ann Quinlan and Nancy Cruzan—were starved by withholding food and water on the grounds that they would not have wanted to live in such a state. From those troubling cases we have descended to the point where last year Jack Kevorkian walked away after assisting in the suicide of a woman who was strong enough to play tennis the day before she died.
"We have developed a schizophrenic attitude toward persons with disabilities. On the one hand, we are supposed to bring them into the mainstream. On the other, we are being urged to agree that certain disabilities are so severe that killing oneself might be a good idea."
The legal thought opening the door to physician-assisted suicide is not a consistent one. Destro points out that the Second Circuit Court remained "blissfully ignorant" of (or at least did not recognize) the language in "scores of decisions" that distinguish between "suicide" and the decision to refuse or withdraw useless or unwanted treatment. In this, the court attempted to diminish the scandal of suicide by identifying it with the nonscandalous refusal of heroic treatment.
There are currently four major cases pending before the courts (and numerous other ones working their way up) that raise what to Destro is the ultimate question: How important are the lives of disabled people?
"This question brings together Christian notions of the integrity of the person; philosophical notions of what a civilized society is all about; and civil rights notions of equal treatment and equal dignity."
Particularly troubling to Destro, who directs Catholic University's Law and Religion Program, is that the Ninth Circuit Court of Appeals has taken the position that since individuals are free in a democratic society to keep their religious beliefs to themselves, public policy may reflect only a pro-suicide view. Those who oppose PAS are branded as religious zealots intent on "imposing their morality" on the rest of us.
"It makes one wonder whether Judge Reinhardt dropped in from Mars. Though he claims the authority to sit in judgment of all religiously based moral values, he seems utterly clueless. The very criticisms he levels at opponents of PAS also apply to its champions. If the religious foundations of a law make it suspect, our entire system of civil-rights laws is suspect, too, for it is clearly based on the religious belief that God made us equal."
Destro thus approaches PAS as primarily a civil-rights issue. "If we can't protect people with severe disabilities from those who would 'help' them take their own lives, haven't we assumed the authority to say what a life is worth?"
Destro believes that when the state makes an exception for persons with disabilities, it deprives them of the protection to which they are entitled under homicide laws. At that point, he says, the disabled no longer enjoy "equal protection of the laws." But this removal, tragically enough, is the logical end of where our courts have been heading for some time.
Such an outcome can be frightening because the limits are so dubious. "Take the Ninth Circuit Court opinion," Destro explains, "which states that 'We hold that a liberty interest exists in the choice of how and when one dies.' We have to ask, to whom does this 'liberty interest' apply? A teenager who wakes up with pimples and who has just been dumped by her boyfriend? Autonomy principles of this type have no logical stopping point."
All this is further complicated by the fact that the definitions of suicide, euthanasia, the disabled, and the terminally ill are too general, too vague, too conflicting, and therefore too dangerous. The result is often ridiculous language, such as when the Ninth Circuit Court extends the "right to die" to persons in an irreversible coma—in which case, of course, it must be exercised by proxy.
As so often happens with judicial activism, when the Ninth Circuit Court judge threw out the Washington State citizens' attempt to ban PAS, he extended the alleged "right" to PAS far beyond what the advocates of PAS dared to advocate. And when people raise concerns about this, they are dismissed as unenlightened.
"There's a cultural snobbery in all of this," Destro points out. "The Ninth Circuit judge treats anybody who has moral qualms as a Neanderthal know-nothing."
Where do the conflicting court opinions leave us, legally? Destro's fear is that the Supreme Court will come out this year with a "wishy washy" opinion that will bring us one step closer to an "open season on the elderly and persons with severe disabilities." While he does not expect the Supreme Court to go as far as the Ninth Circuit Court, if they leave the door open at all, "it will just be a matter of time before the courts find that all the equities favor suicide and euthanasia. The precedents are in place, and their logic is inexorable."
Destro's hope, however, is that people of faith—including Jews, Christians, and Muslims—will view the federal court decisions legalizing euthanasia as a "wake-up call." "These cases are a mirror image of what we have become," says Destro. "Our legal and philosophical elites have lost sight of the reason why we protect minorities and individuals who exist outside the mainstream of society. It is not simply a question of political or economic power. Civil rights is a question of morals."
The geriatrician: Working in a broken system
In the late seventies, Dr. Joanne Lynn was assigned to an "undervalued and academically meaningless job," a nascent hospice program "and a largely ignored nursing home ward full of severely demented and disabled patients in long-term care." She was told that it would be "depressing and medically worthless work." Yet almost 20 years later, and after having served two thousand persons who have died, Lynn describes her work as "wonderful," saying it has been "an extraordinary privilege to have been allowed to travel in the valley of death" with so many patients.
Lynn, a member of the United Church of Christ, points out that one reason that PAS is in such demand is because the level of care among the dying has become so pitiful. "My patients encounter a system that is dominated by concerns adverse to theirs. In our health-care system, it is easier to get open heart surgery than Meals on Wheels and easier to get antibiotics than eyeglasses. If it were easy to get good care, the question of whether one should be able to choose to be killed would be troubling and important. But it is not easy to get good care. In fact, it is so difficult and unlikely that people might well seek death just because doing otherwise is so burdensome."
In the years that Lynn has been involved in caring for the dying, the dynamics of the debate over PAS have changed dramatically. "Ten to fifteen years ago, we were still hotly debating about whether we could stop a ventilator," she laughs. And PAS advocates were considered "way off the far edge."
Lynn believes that one of the social factors that helped change the debate was the emergence of AIDS. Instead of broken and weary 80-year-old citizens dealing with life-threatening diseases and illnesses, affluent 25- to 35-year-old men—eager and able to extend their political clout and organization—suddenly joined the debate. Almost immediately, prolonged deaths became a matter of public discussion.
Lynn approaches the subject of PAS from a perspective that is different from most. The social alienation of the elderly leads her to ask, "We have a care system that does not prioritize pain relief or emotional support—and in this system we want to discuss PAS?
"We deal with so many people for whom their social situation is self-coercive. An 88-year-old lady with bad hearing, bad eyesight, and who has outlived most of her siblings gets a bad disease, doesn't want to be Medicaid dependent, yet doesn't have enough resources and knows she'll end up in a nursing home, which she says she hates." After all this, somewhat understandably, "the patient says she wants to be dead.
Second of three parts; (click here to read part 3)
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