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Chapter One
A Living Human Being
The need to be treated as a living human being.
The need to maintain a sense of hopefulness, however changing its focus may be.
The need to be cared for by those who can maintain a sense of hopefulness, however changing this may be.
The need to die in peace and dignity.
Every day, in thousands of hospital rooms across the country, family members gather sadly beside the beds of loved ones who are dying of cancer, of heart disease, of pneumonia, or of a myriad of other illnesses. Husbands and wives, parents, sons and daughters, grandchildren, brothers, sisters, and friends sit and stand uncomfortably, wondering what to say, what to do, what to feel, and what to think.
Finally someone mentions the patient, his disease, or perhaps the funeral. Horrified, someone else immediately halts the conversation, insisting in a whisper that everyone go out into the hallway to discuss "that." Invariably, as they begin to leave the room, a surprisingly strong voice comes from the patient's bed: "I'm not dead yet! You can talk to me. You can talk about me. Just don't talk without me!"
Words like these are heard day after day in hospitals, homes, and hospices. They're shouted in anger or whispered as a plea, spoken in plaintive, demanding, or matter-of-fact voices. "I'm not dead yet. I'm still alive."
The dying want to be treated—and they have the need to be treated—as living human beings until the moment they die. Unknowingly we "protect them" from the valuable opportunity to complete their life. Often we think of them as their diseases, by acting as if they are incapable of making their own decisions, by negating their opinions, by overlooking their desires, by withholding information from them, and by omitting them from conversations. Without realizing we are doing so, we rob them of their dignity, we rob them of their own last chapter of life, and we rob them of their chance to tell us they know they are dying.
One of my earliest memories of hospice was a discussion I had with the parents of a man who was suffering from leukemia. He was in his late twenties, not much older than I was at the time. The older couple shared how they were putting a conscious effort into taking their cues from him and not letting their opinions overpower him. His mother told me, in a softened voice, "We have protected him from the day he was born, from childhood diseases, from traffic, from ignorance and poverty. We helped him become his own man. Now we want to protect him from death, but we can't. We must let this be his life and his death." While we should never deny that the dying are dying, we should also never treat them as broken or no longer whole. Despite their illnesses, despite the fact that they are dying, they are still whole human beings. Life ends at death, we must always remind ourselves, not a moment before. To do any less than treat the dying as living human beings until death is to take from them their self-images, their stories, their hopes, and their dignity. We must continue to see them as they see themselves, to listen to their stories, to support their hope, and to treat them with dignity.
Images of Life
Ten years ago I stood by my father's bed in the intensive care unit of a Sacramento hospital. It was 1:00 A.M. I had just flown in from Los Angeles after being told that he would not make it. I remember stepping out of the elevator onto the intensive care floor—it had that stillness that all hospitals have in the middle of the night. Dad was unconscious as I stepped up to his bed. I looked down at this now frail little man. It was strange to see him so quiet and still, dominated by the large and noisy heart monitor and other machines. He had always been so vital, so strong. I sat by his bed, trying to understand that this was going to be the last night of my father's life. I couldn't comprehend life without him. I sat there crying when, perhaps in response to my tears, he woke up and asked: "What's wrong, David?" He said it as if I were a little boy again and he was the father who could make all my problems disappear. For just a moment, it seemed as if he didn't have to die.
As we spoke about his situation, he told me that he was ready to die. My emotions were conflicted. I was terrified of losing him yet glad that he was prepared to move on with peace of mind. He also told me something I had never thought about before. "Every morning," he explained, "when I wake up, I feel like I'm twenty-seven again. Then I realize, of course, that I'm an eighty-four-year-old man. But I think of myself as being twenty-seven, not an old man with a bad heart. No matter what's happening to my body, I still think of myself as a strong, whole human being. I want to be treated that way."
Nothing specific happened to my father at age twenty-seven. It wasn't the height of his career; he didn't win an award or invent anything. But it was a time when he was full of life and hope, a time when the future was waiting to be discovered and enjoyed. I looked at my father and saw a tired old man who was ready to die. He looked inside of himself and saw a twenty-seven-year-old youngster ready to live. That was the way he would always see himself. And that was how I had to see him too.
We each carry an image of ourselves in our heads. It's "who we are" in our minds, a picture formed before we grew older, when we were most full of life. We see ourselves as something that transcends what we're going through. And we continue to see ourselves at our fullest times of life, no matter how old we may be or how ill we may have become. We cling to that part of ourselves that is indefinable and changeless, that does not get lost and does not deteriorate with age or disease.
The Needs of the Dying
Excerpted from The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter by David Kessler
All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.
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