Thinking Out Loud: On The Personal, The Political, The Public And The Private (v5.0)
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The United Nations has agreed to airlift food into the interior, but that is neither an adequate nor a long-term solution. Senator Nancy Kassebaum, who sits on the Senate subcommittee on African affairs, supports the use of an international force of soldiers to make sure food shipments get to the people. But she also says the United States must have a continuing commitment to development in African nations instead of a crisis-management approach.
Just a year ago some of us, unpersuaded by the high moral principles involved in giving our all for cheap oil, were saying that America could no longer afford to police the world. With the president’s Gulf-war bluster about liberation, we lost sight of the best reason to involve ourselves in foreign affairs—because it is sometimes obviously the moral thing to do.
The new secretary general of the United Nations, Boutros Boutros-Ghali, an Egyptian who is the first leader of the U.N. from the continent of Africa, has referred to the Bosnian conflict as the “rich man’s war.” He means it is a white man’s war, a Eurowar, in its combatants, its victims, and its international interest. That makes aid no less necessary. Just as the color of its children must make no difference in our help for Somalia. Surely our attention span can encompass two mortal crises at once. Surely our empathy can transcend race.
SEEKING A SENSE OF CONTROL
December 10, 1990
Many years ago I took a stroll around the block with the mother of a friend. As we walked she made sudden noises, like shots from a gun. But when I listened carefully it seemed that the sounds were orphaned bits of words, as though her conversation were a tape and most of it had been erased, leaving only stray fricatives and glottal stops. Perhaps the sounds were the remaining shreds of her personality, which had been taken into some dark place by a then little-known ailment called Alzheimer’s disease.
This may have been the sort of life Janet Adkins feared when she lay in a Volkswagen van and pressed the button that released lethal drugs into her body. Mrs. Adkins’s doctor believed she had years to go before her self disappeared into the degenerative swamp of Alzheimer’s. But anyone who has ever encountered the disease knows its Catch-22; by the time you might want to die, you’re too far gone to do anything about it. Mrs. Adkins, a former English teacher, looked into the future and committed suicide.
If she had done so alone, her story would be a small one. But she went to Jack Kevorkian, a euthanasia entrepreneur who constructed a suicide machine at home. Mrs. Adkins used it to go quietly into that good night. And Dr. Kevorkian was charged with first-degree murder.
This is the sort of case prosecutors characterize as “sending a message,” as though we were unruly schoolchildren waiting to throw rocks through the windows of the law. Mrs. Adkins could have accomplished what she sought with a handgun or a tall building. But she went to Dr. Kevorkian because she wanted a gentle death, the kind we offer now even for some of those we execute.
There is a message in this case, but it is not the one prosecutors send. It illustrates how desperate we have become to retain some modicum of control in the face not only of horrible illness but of medical protocols that lengthen degeneration and dying. There are probably few Americans who, like Mrs. Adkins, want to end their lives while they are still unmarred by illness. And only one country, the Netherlands, permits physician-assisted suicide. But there are thousands of people who find that after the chemotherapy and the surgeries and the progression of disease they have become a macabre mockery of their former selves, keeping their lives but losing their dignity.
Once a friend told me that her mother, who was suffering from ovarian cancer, had a superb oncologist. He was kind and considerate and explained all procedures thoroughly. But she blurted out what was his great virtue: “He told me how many of my mother’s painkillers constituted a lethal dose.”
There are doctors like that, who go quietly about the business of tempering science with mercy. A pneumonia goes untreated; a new course of chemo is not tried. The American Hospital Association says 70 percent of the deaths that occur in this country include some negotiated agreement not to use life-prolonging technology.
The case of Nancy Cruzan may end soon, although her parents believe her life ended years ago. The State of Missouri, after fighting all the way to the Supreme Court, has withdrawn its opposition to having the thirty-two-year-old woman’s feeding tube removed. The cases of Nancy Cruzan, who has been in a persistent vegetative state for seven years, and Janet Adkins, who discussed her planned suicide with her family, are worlds apart. And yet both the Cruzan family and Mrs. Adkins yearned for the same thing: a sense of control.
Hard cases make bad law, my lawyer says, and this is one. Dr. Kevorkian, an assisted-suicide zealot who has been a guest on Donahue, had a vested interest in Mrs. Adkin’s decision to end her life. But hard cases sometimes illuminate hard issues. The medical profession must continue to find ways to balance its capabilities and their human costs. The people must demand laws that allow them to participate in that balancing, laws that embody the facts of their lives.
The question of how and when we die, in an age of respirators and antibiotics and feed tubes, has become one of the great “who decides?” issues of modern time. When Nancy Cruzan’s case was being heard, people with medical war stories said: “Wheel her into the courtroom. Then they’ll understand.” Perhaps that is what Janet Adkins did: placed the evidence before the judge she believed knew best, saw herself incontinent, incompetent, incapable of knowing the difference between Tom and Jerry and War and Peace. And then pronounced sentence.
A TIME TO DIE
June 3, 1990
When she visits her husband in the nursing home, she apologizes to him. Ann is a nurse, and her husband was a carpenter, and when they came home from work in the old days, before the accident, she would tell him about the people on machines, the respirators, and the feeding tubes. And he would say, “If that ever happens to me, I want you to shoot me.”
As his eyes stare out into some middle distance from his hospital bed, his feeding tube a small stigma in his side, she tells him she is sorry she cannot do what he asked.
The American Academy of Neurology defines a persistent vegetative state thus: “A form of eyes-open permanent unconsciousness in which the patient has periods of wakefulness and physiologic sleep/wake cycles, but at no time is the patient aware of himself or his environment.” There may be as many as ten thousand people in this condition in the United States. Ann’s husband has been one of them since the night before Thanksgiving in 1986, when his car didn’t make the curve.
He is thirty.
She is twenty-nine.
She feels as if her husband died three years ago and she’s waiting for the funeral. Three times she has asked to have the feeding tube removed. The hospital said no. The nursing home said no.
The lawyer said, “Wait for Cruzan.”
There are many stories like this one in America, but the one we know best now is the story of thirty-two-year-old Nancy Cruzan. She once told a friend she would never want to be kept alive as a vegetable. Her parents have spent eight years arguing that that is important, arguing that she would not want to continue life in a persistent vegetative state, arguing that her feeding tube should be removed. Any day now the Supreme Court will decide whether this can be done, whether there is a constitutional right to discontinue unwanted life-sustaining treatment.
Right now there is a patchwork of state regulation and case law on this matter. In some places you can remove a respirator but not a feeding tube. In some places you can remove a feeding tube if a patient left written instructions, but not if he simply said he wouldn’t want one.
In most places people who are spending their lives staring at the contorted, withered shell of someone they love dearly must go to court to do what they think best. Many of them never make it. There are the legal costs. A retainer of $10,000 is not exorbitant, given the amount of time spent on a case like this, but for most Americans, it might as well be $10 million.
She doesn’t go to see her husband much. Most of the time she believes she is looking at a shell. Sometimes she thinks there is a spark inside. I don’t know which is worse: a body being kept alive while no one is home or a bit of a man trapped, like a fly in a bot-tle, unable to talk, to see, to touch—just like a ghost.
The Supreme Court may not see fit to provide constitutional salvation for these people. But just as the Webster decision has galvanized those who want abortion to remain legal, perhaps Cruzan will remind us that we must demand reasonable regulations to help people whose husbands, fathers, daughters have become the living dead. Someday we could be beside the bed, or in it.
There must be some reasonable way to allow someone to speak for us when we cannot speak for ourselves, some reasonable way to make the distinction between real life and the mirage modern medicine can create. A way that does not include years of court appearances and bedside vigils.
He asked her to shoot him.
I’m betting that if you stopped ten people on the street and asked them who should make this decision for that man, they would say his wife should.
“If he could talk,” Ann said, “he’d be really angry at me for not doing what he asked.”
JUSTICE AND MERCY
July 29, 1990
Perhaps there comes a moment in the life of every woman when she yearns to telephone an 84-year-old man she has never met and ask, “How could you do this to me?”
For me, that moment came last week.
I am taking the resignation of Justice William Brennan personally. I have read all of some of his opinions, and bits of others, and I know where he dissented and where he pulled together a tenuous majority. And I keep remembering the speech in The Merchant of Venice about mercy tempering justice.
Over the years I have come to believe that as a member of that mysterious body the Supreme Court he was someone who was in my corner, who touched my life from within one of those pale official tombs that line the streets of Washington. “The lightning rod for individual rights and individual freedom,” Barbara Jordan called him on television—the man who once referred to the treatment of women as “ ‘romantic paternalism’ which, in practical cal effect, put women not on a pedestal, but in a cage.” That’s how I thought of him the morning after he called it quits. Not too shabby for an ordinary guy appointed by Ike.
He was a kinder, gentler justice. One reason why that well-wrought phrase has become so potent is that it is so patently false. We have the sour disposition of a country with diminished expectations, a country whose people have been living through a depression both economic and spiritual.
It is a depression our government refuses to acknowledge, so the American people live with a sinking feeling that their sinking standard of living is a failure of the individual. “I really don’t feel as if politicians have any connection to me personally,” a college student told me. Our elections are as big, bright, and empty as balloons.
Only one branch of our tripartite system is not governed by the ballot box, and that is the judiciary. No commercials with the flag rippling in the breeze, no slogans (“Blackmun—because it’s your body”), no limits on term of office. Nine private people spend their lives defining our own through cases. Behind those cases there are always human beings, who want to be spared loyalty oaths and censorship, who want to buy birth-control devices, and who want to be admitted to good colleges. Justice Brennan seemed to pick the people out of the fact patterns, and to respond to their problems and their pain. Justice and mercy. Maybe that was not his job, but I’m glad he did it.
America is a country that seems forever to be either toddler or teenager, at those two stages of human development characterized by conflict between autonomy and security. While some interpret this to mean we want neither to use the potty nor have a curfew, it’s a tension that is one of our great strengths. Justice Brennan stressed both sides, the right to have government leave us alone in some cases and be our defender in others. The rights of the accused. Free speech, however objectionable. Affirmative action. The right to die, to do what we please in our bedrooms, to be protected from sex discrimination. The discussion of his retirement has centered on a single right, the right to a legal abortion, and that is sad because his vision is larger than that.
His detractors saw it as too large, a liberal agenda that made the Court into a legislator of public policy, not an interpreter of the Constitution. Judge Robert Bork, whose nomination to the High Court was rejected by the Senate and who is still smarting from the rebuff, calls Justice Brennan “imperialistic.” Judge Bork is a fan of the framers, those increasingly popular guys who actually made up the Constitution, and whose intent has become a matter of great moment to some jurists. We have judges who talk about the framers as though they played squash with them regularly. It reminds you of the proprietary, slightly arrogant way in which born-again Christians talk about God. They know Him; you don’t.
The only thing I know about the framers is that they were general kinds of guys. They didn’t go on about the right to put fences around your farmland, or the right to pull your children out of school if the teacher taught sedition. They used broad terms. Life. Property. Liberty. They designed a document that wouldn’t go out of fashion. Written by men whose wives couldn’t vote and whose country permitted slavery, it has transcended their time.
Justice Brennan made it transcendent. His work is full of empathy, and that is an uncommon thing, not only in a judge but in our society. We rarely take government personally, and so I was surprised to feel personally disfranchised by his loss. I prize what Justice Louis Brandeis called “the right to be let alone.” I’m an individual. One of the best friends an individual ever had has left the arena, and we will all miss him, whether we know it yet or not.
PARENTAL RITES
September 25, 1991
Adolescence is a tough time for parent and child alike. It is a time between: between childhood and maturity, between parental protection and personal responsibility, between life stage-managed by grown-ups and life privately held. Past thirteen, shy of twenty, our children seem to fire off from time to time like a barrel full of Roman candles. Prom pictures show them the way we want them, curled and clean.
A week ago, in his diocesan newspaper column, Cardinal O’Connor wrote of a call from a New York law firm offering to represent Catholic parents of public school students “if condoms are forced on such a youngster without parental consent.” It’s the verb that is the red flag in that sentence. The plan to make condoms available in New York City high schools has nothing to do with force. The scenario of the principal at the school door pressing prophylactics for extra credit on unwilling fourteen-year-old virgins is useful for those who are opposed to this project. But it is a fraud.
Teenagers who feel they need condoms will go to a specially designated room and receive them from a specially trained school staff member. Some will do this because they’ve been told condoms can protect against the AIDS virus. Some will do it because they’ve heard condoms can protect against sexually transmitted diseases. All will be assuming a degree of responsibility unusual in a person of seventeen. Chastity may be preferable, but if not adhered to, responsibility is critical, even lifesaving.
The idea of force in such a prog
ram is a sop for indignant parents. If we imagine teenagers being forced into condom use and, by extension, sex, we don’t have to think of them as sexual beings choosing, despite our own moral imperatives, to be sexually active. If we imagine force, we don’t have to wonder what role we parents have played; we can simply blame the schools, the liberal power structure, the social radicals.
At a Board of Education meeting earlier this month, the representative from Staten Island, Michael Petrides, announced, “There is no way in this city and in these United States that someone is going to tell my son he can have a condom when I say he can’t.” News flash, Mr. Petrides: Any drugstore clerk in America can do just that if your son has the money.
Other objections to the condom program are just as redolent of the seductive idea that we have absolute control over our kids, just as blind to what some teenagers need to stay healthy and obsessed with what some parents need to feel self-satisfied. If we are confident that they are chaste, there is nothing to worry about, despite the suggestion that condoms in the schools are the 1990’s equivalent of Spanish Fly.
If we are not confident, there is plenty to worry about, the least of it condoms; there are diseases that can cause sterility and one that will even cause death. We have many years to try to shape small and malleable people into big ones who share the values we hold most dear. Sometimes we manage to do it. And sometimes we do not. To jeopardize their health because they have not turned out exactly as we planned is an extraordinarily selfish thing to do, reminiscent of a variation on that old vaudeville turn: Enough about me. Let’s talk about you. How do you make me feel about myself?