`I don’t think I’d want a suicidal thing, but my main thought is that when it’s my time, I’d like to go with dignity-like the life I’ve led.”
At 77, Edythe Levy is in good health, but she has taken time to think about the manner of her death.
Last year when the Chicago woman made some changes in her will, her attorney asked if she wanted to add some instructions about her care in case of a terminal illness.
So she made a living will, declaring that in case of an irreversible condition where death would normally be imminent, she should be allowed to die naturally and not be subjected to procedures that would only prolong the dying process. She gave a copy of the document to her doctor.
“I don’t want to have to suffer if I’m not going to get better,” she said.
Such quiet death-with-dignity planning is being done by Edythe Levys all over the country every day, but that reality has been overshadowed by the enormous publicity given to assisted suicide by Michigan’s Dr. Jack Kevorkian and Oregon’s recent passage of a law legalizing that act.
The fact is that those making out a living will or kindred instructions for end-of-life care deal with the same issues of lengthy suffering, expensive medical treatment and drawn-out dying that come up in connection with suicide for the terminally ill. And such people outnumber assisted suicides by a huge majority.
But the controversy over assisted suicide has obscured that fact and skewed discussion, according to some.
“Dr. Kevorkian called the wrong question,” said Karen Orloff Kaplan, executive director of New York-based Choice In Dying, which claims to be the world’s largest group promoting so-called “advanced directives” for dying.
“The question of how we spend the final chapter of our lives is very important. Whether people talk about it or not, it’s on everybody’s mind,” she said. “If all we talk about is the Kevorkian solution, we miss the whole range of options available to people.”
Kaplan said that in the last 18 months she has seen a big change in public attitudes toward end-of-life planning, in part because of advanced directives made by Richard Nixon and Jacqueline Kennedy Onassis before their deaths last spring. Onassis asked that she be removed from a hospital and be allowed to die at home.
Calls to the organization increased from 200 to 300 a week to more than 5,000 a week during the month after Onassis’ death, she said.
“Remember the time we didn’t talk about sex? Now we talk about it all the time,” said Kaplan. “Death has been a taboo subject, but in the past year-and-a-half, it’s come out of the closet. People are more and more comfortable talking about it.”
A prime example of that development has been the success of “How We Die,” a book detailing the process of dying of various illnesses by Dr. Sherwin Nuland, a surgeon and teacher at Yale University School of Medicine. It won the 1994 National Book Award and was a non-fiction best seller.
Contributing to the trend has been the aging of the Baby Boomers and the fact that medicine has transformed the dying process into something requiring choice rather than an unquestioned inevitability.
“The growth of medical technology is allowing people to stave off death much longer than before, and people who have been through it with a loved one realize that maybe they don’t want that,” said Christine Kassel, a professor of medicine and public policy at the University of Chicago who has a special interest in the euthanasia issue.
Americans open to the idea
The idea of some form of euthanasia, which means “good death,” is clearly acceptable to most Americans. A 1990 Gallup Poll found that about 75 percent agreed that a terminally ill patient has the right to request that treatment be withheld so death can ensue; 84 percent said they would want treatment withheld if they were terminally ill.
And 75 percent said they would like to have a living will, such as Levy made, though only about 20 percent said they had prepared one.
The living will, one of two widely used forms of advanced directive, is in a medical declaration to be given to a doctor or a hospital.
The other form is a durable power of attorney for health care, which appoints someone to make decisions about care if a patient is no longer competent to do so. It can also include general declarations about whether care should be withheld to let death come, and at what point that should occur.
People come to the point of mulling over their death long enough to make out an advanced directive in a variety of ways. Often, like Levy, they speak of having watched the painful, extended death of loved ones or friends who hadn’t expressed their wishes beforehand.
“I decided on a living will after I saw one of my cousins suffer who died seven months after being diagnosed and having surgery,” she said. “I know of people whose deaths have been long and drawn out, and it’s hard on the family and hard on the person.”
Sometimes the matter comes up during estate planning with a lawyer, according to Paul Arshonsky, a Northbrook attorney who specializes in that area and in legal issues dealing with nursing care for the elderly.
Or it can be discussed when somebody enters the hospital. Since 1991, federal law has required all health-care facilities that receive Medicare or Medicaid funds to inform patients about their rights to refuse medical treatment and to sign advance directives.
Some senior citizens become interested after attending seminars on the subject, said Arshonsky, who gives such seminars himself. Others may confront it when they get a diagnosis of a life-threatening illness for themselves or a close family member, he added.
Most of his clients, once they decide to consider the idea, can do so with relative calm, but some have problems, Arshonsky noted. For instance, his mother, who is in a nursing home, discusses the subject with difficulty, he said; but his father, who died recently, was able to discuss it “readily” and prepare an advanced directive before his death.
Communicating wishes
The reality is that most people who make out advanced directives don’t end up using them, according to Kaplan. But in any case a directive is “an enormously valuable communication tool” with one’s doctor and family as much as a legal document, he said.
The communication aspect of a living will is clearly important to Bernard Baum, 68, of Evanston, a professor of health policy and administration at the University of Illinois at Chicago.
Baum, who signed a living will when he was in his 50s after dealing with the terminal illness of his father-in-law, said he had discussed the issue with his wife and four adult children “maybe even to the point of boredom-but that’s my style.”
Baum said his directive is an expression of his beliefs in the value of facing death and in planning ahead, plus his desires to avoid suffering and to relieve his children of unnecessary burdens.
He added that he’s still afraid the children will have trouble following his wishes not to extend his life unnecessarily. “But I don’t want to put on them the burden of pulling the plug. I say: `This is what I’d like, don’t feel bad. For my sake and your sake, don’t prolong the inevitable.’ “
To further minimize difficulties for his survivors, Baum has also procured a burial plot and monument and even prepaid his funeral expenses.
But Baum says his self-admitted “hyper-rationality” on the subject does not extend to contemplating active or assisted suicide in a terminal illness.
“It’s harder on the family,” he said. “I don’t condemn it, but if your objective is cessation of pain, then I think it’s copping out.”
Legal aspects
That moral and psychological distinction between passive euthanasia-pulling the plug, or not putting it in to start with-and active euthanasia, or suicide, is made by many people. The legal distinction is also widespread.
Suicide has a long history of condemnation throughout the world, and was banned in England until 1961. Assisted suicide is prohibited almost everywhere. In this country, it is explicitly legal only in Oregon and is clearly criminal in all but a handful of states.
Some feel that suicide in the face of irreversible illness is a highly moral act. When Minnesota broadcasting-school founder Richard Brown and his wife, Helen, both ailing and in their 70s, decided to kill themselves in December so they could leave their $10 million fortune to a church charity rather than spend it on medical care, their former pastor called it “the high road to death.”
The pastor, Charles Heuser, now retired from the United Church of Christ and living in Oregon, said Brown’s act was “standing up like a man, like a human being. If death is going home to the Father, why go crippled, bent and suffering?”
Others find that attitude appalling. “I can see the next generation of church commercials-how with each year of life you cut short, you can help with the church budget for the coming year,” said David Clark, director of the Center for Suicide Research and Prevention at Rush-Presbyterian-St. Luke’s Medical Center in Chicago.
Clark takes the position that many so-called rational suicides by the elderly in the face of serious illness are the result of depression that can be treated.
In some cases the line between active and passive euthanasia is unclear, leading to confusion on the part of doctors, according to the University of Chicago’s Kassel.
“It’s often a false distinction, and we can get too hung up on it,” she said. “Once one decides not to prolong life but to comfort the patient, it’s totally morally acceptable to give adequate doses of pain medication, even if that depresses breathing and seems to hasten death.
“But many physicians and nurses are still very uncomfortable with giving those doses,” she said.
Refuting myths
Choice In Dying doesn’t take an official position on active euthanasia or assisted suicide, but campaigns for increased public debate on the subject.
Some Americans are suspicious of euthanasia of any kind. The Illinois Right to Life Committee opposes living wills on the grounds that people who make them when they’re healthy may change their minds.
“No one can anticipate what type of care they need, or what their disease or terminal condition is going to be,” said Mary Anne Hackett, president of the group. “A lot of people think they don’t want care, but when they get into the hospital, they do.”
The group also fears there is pressure from the government and pro-euthanasia groups to pare health-care expenditures by persuading the elderly to make commitments to forego life-prolonging treatment.
Kaplan said the overall issue of cost at least should be discussed. “The issue rests with having a national dialogue leading to a policy decision that would balance the rights and needs of the individual against society. If there are just so many dollars, how do we decide who gets them, and for what?”
But she argued there is a widespread myth about a living will that it devalues life and leads to less-conscientious medical care. “That’s not true,” she said. “It only goes into effect at the very end, if there’s no reasonable hope for recovery. And you use it to express your own choices.”
That issue of extending one’s power of choice to the very end may be a key psychological factor for those who make advanced directives.
“Unless you make a decision and a statement, what happens is totally uncontrolled,” said Baum. “If you don’t plan, things just go.”
