Thinking Out Loud: On The Personal, The Political, The Public And The Private (v5.0) (9 page)

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 The State of Missouri, after fighting all the way to the Supreme Court, has withdrawn its opposition to having the thirty-two-year-old woman’s feeding tube removed.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.

And there is the holier-than-thou factor. One family in Oregon, whose son was drowned at age six and died at age nineteen, never went to court to have his feeding tube removed because, his mother said, they didn’t want problems with right-to-life zealots. In New York State, a bill that would allow people to designate someone to make medical decisions if they were incapacitated has been kicking around the Legislature for a year, supported by groups ranging from the Lutherans to the Gay
Men’s Health Crisis Center. The state Right to Life Committee has been vehement in its opposition. That sort of reaction is why Ann’s last name does not appear here. She is afraid of the right-to-life types, of the hate mail and the publicity they bring. “Yes, I am,” she says.

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.