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Staying in Charge

John Wiley & Sons

Chapter One

Who we are and the personal reasons why we wrote this book are germane. For one thing, men and women often approach questions of illness quite differently. For instance, many men tend to deny more than do women, or fear that talking about death will cause it to happen. Many women think in terms of a "good death," meaning comfort and peace and preparedness of spirit as well as body. Women often make end-of-life decisions more in terms of their children's and their spouses' needs than do men. Men often want to prolong life as much as possible, no matter the pain. Women take pain into consideration. And so on. Which is why we thought having both a man and a woman write this book would be very helpful.

One of us is a woman in her early sixties, a social worker whose professional work is day-to-day involvement with the legal, social, medical, ethical, and personal ramifications of end-of-life decision-making. As president of the not-for-profit organization Last Acts Partnership (advocating quality end-of-life care), she spends her days trying to improve care near the end of life for all Americans. She tries to get people to take control by thinking about issues they would rather hide in the deep recesses of their minds, and to alert society to the necessity of discourse aboutthose matters.

The other author is a man in his late sixties whose work as a writer and as a television producer has taken him to scenes of serious illness and death, and who has previously written a book about death. Together we hope to be able to guide you through these labyrinths.

Karen's Story

Some years ago, just after I turned fifty, my mother went into the hospital with a serious illness. Because she was close to eighty and had been ill for some time, we were not surprised by her turn for the worse, nor would we have been astonished if she had died quickly. That was not the case, however. Because of modern medical care and my mother's indomitable spirit and constitution, she lingered, and as she lingered one body system after another gave out, first her kidneys, then her lungs, then her heart. At one point the doctors told me that my mother would have to be put on a respirator; otherwise, she would die immediately.

Up until that time, I had assumed her doctors would make such decisions, since they had been treating her for many years. But these physicians now expected me to tell them what I wanted them to do. I had never discussed such things with my mother. I didn't know whether-had she been conscious and able to speak for herself-she would have wanted to be kept alive so painfully with so little to gain, or would have wanted to be allowed to die peacefully. After much inner turmoil and effort to guess what Mother would have wanted, I asked the doctors to try a respirator and see what happened.

Aroused by the strange discomfort of having the respirator tubes inserted, my mother struggled, obviously in pain. When the tubes were removed to see if she could breathe on her own, she told us in no uncertain terms that we should never attach her to any machines again. Despite all loving intentions, I had guessed incorrectly. And so we followed her wishes; disconnected the tubes, the electrodes, and needles; and gave her enough morphine to keep her totally comfortable. That's how my mother died, at last, peacefully.

While I sat in the hospital waiting room and tried to decide what I should do, I listened to others whose loved ones were in intensive care. Most of those waiting were women-daughters, sisters, aunts, mothers, lovers-and I became aware that they, too, did not know what to do, had not thought about such end-of-life decision-making, and had not discussed such issues with those loved ones who were now unable to say what they wanted.

Often the physicians were of little help, mainly because they saw their job as maintaining life, even when all that was being extended was the dying process. The relatives and loved ones were those who had to decide, and they had little to go on.

It seems fitting, then, that I now find myself president of an organization whose purpose is to help people of all ages think about these issues in advance, so that their loved ones and the hospitals and hospices they eventually turn to can know what to do to help them live the last chapter of their lives comfortably and peacefully. We exist to help everyone exercise his or her right to participate fully in decisions about their medical treatment at the end of life, to secure adequate pain medication and other appropriate comfort care, and to be treated with dignity and respect.

Christopher's Story

In 1992, I was diagnosed with non-Hodgkin's lymphoma. I was fifty-seven.

Non-Hodgkin's lymphoma is actually fifteen different kinds of cancer that can be very virulent and fast, or slow and not too dangerous, but even the least potent has to be caught and treated. While the doctors at Memorial Sloan Kettering were trying to decide exactly what to do with my version, which was slow-growing and discovered early on, I was trying to decide how to come to terms with death.

It had never occurred to me that I might get a serious ailment before I was in my eighties. I have one of those natural builds that makes heart problems a negligible possibility, none of my immediate family had died from cancer, and I wasn't overweight or underweight or suffering from anemia or any other obvious physical problem. In other words, like many, I thought I would either fall off a cliff on a trip somewhere or die in my sleep of "old age."

Think again. Here I was in "middle age" being told that I had a chronic cancer that could not be cured. It could be held back, retarded, dismissed from my body for a while, but most likely it would return.

So my first thought was that I was, after all, mortal. My second thought was that I was going to die-soon. My third thought was, "Why, me?"

I slept poorly, worried about what to tell my wife and daughters about my chances of survival, and got swept off my feet emotionally.

These were the reactions that many if not most people diagnosed with a serious disease find themselves facing: anxiety, depression, anger, panic over loss of control. I was forced to reevaluate myself and the way I had led my life, and to ponder my position in the universe. The news was so dispiriting that I found myself too depressed to do daily tasks, to communicate with my family and friends, to attend to business.

At the time I was diagnosed, I didn't know about advance directives-living wills and medical powers of attorney. I didn't know how to think about pain. And I certainly had never thought about cutting back at work or making plans for emotional or spiritual help in the face of such a dreaded disease.

What I learned in the months to follow was that it doesn't really matter how serious or hopeful the diagnosis; the first time you are told that you have cancer is a devastating experience. You can't hear that you're probably not going to die from this disease. You can't hear the encouraging words from friends, family, and doctors. All you want is to be cured!

Slowly, I began to realize that I wasn't going to die. I began to believe that my doctors were going to save me; that my family was telling me they loved me; that I could relax a little and enjoy what was left of my life.

I decided in that year of recognizing mortality that I would be as prepared as I could be for the time when death did come knocking at the door with more serious intentions. I would write a living will, appoint someone to stand in for me if I couldn't speak or think for myself, get long-term health insurance so that I could be taken care of at home should I get more seriously ill, and make my relationships with loved ones as close as I could.

When Karen Kaplan asked me to write this book with her, I quickly agreed. I am aware that thinking about death is very difficult for many men. We fear that if we talk about death, it will come sooner, or make us more afraid of the end. In fact, the opposite is true: talking about dying and death can be reassuring. And thinking and planning for it well in advance can be more than reassuring: it can save lots of pain and anxiety. It can save loved ones lots of regret, and can improve our lives and others'.

This book is a way to share some of what I learned when I became ill, of how to think about dying and death-of how to live a life as fully as possible while knowing that another disease or threat of death could be around the corner, how to gather friends and family and health care workers around the campfire to guide and protect.

Luckily, I was merely tapped on the shoulder, given a warning, and awakened to the need to think ahead, to plan ahead, to make myself as educated as I can be about the events at the end of the journey.

The lymphoma of 1992 wasn't the end of it. Eight years later, I found out I had prostate cancer. Forty days of radiation seems to have sent that into deep remission.

But even that wasn't the end of it: As we were revising this book for publication, in the winter of 2003, a routine examination showed some suspicious nodes and lesions in my interior. After many tests, the result was that I had to have a painful abdominal operation to remove some of the threatening material. After six days in the hospital, I returned to work, more knowledgeable than ever that:

Chronic illness is by no means the same as a death sentence. It is not equivalent to dying. In 1992, despite a cancer diagnosis, I had many years to go. I still do.

Pain and loneliness can be frightening, but there are ways to greatly alleviate the symptoms and the fears.

Learning to ask the right questions and demand the right answers is a big part of banishing the fears we talk about in the next chapter.

(Continues...)

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Excerpted from Staying in Charge by Karen Orloff Kaplan Christopher Lukas Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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