Kübler-Ross - Living with Death and Dying

Elisabeth Kbler-Ross is the author of

ON DEATH AND DYING

QUESTIONS AND ANSWERS
ON DEATH AND DYING

DEATH: THE FINAL STAGE OF GROWTH

TO LIVE UNTIL WE SAY GOOD-BYE

LIVING WITH DEATH AND DYING

WORKING IT THROUGH

ON CHILDREN AND DEATH

AIDS: THE ULTIMATE CHALLENGE

THE WHEEL OF LIFE

Rockefeller Center
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New York, NY 10020
www.SimonandSchuster.com

Copyright 1981 by Elisabeth Kbler-Ross and
Ross Medical Associates

All rights reserved,
including the right of reproduction
in whole or in part in any form.

First Touchstone Edition 1997

TOUCHSTONE and colophon are registered trademarks of
Simon & Schuster Inc.

Designed by Jack Meserole

Manufactured in the United States of America

7 9 10 8 6

eISBN: 978-1-4391-2528-1

The Library of Congress has cataloged a previous edition as follows:

Kbler-Ross, Elisabeth.
Living with death and dying.

Reprint. Originally published: New York: Macmillan, 1981.
1. Terminal care. 2. DeathPsychological aspects.
3. Terminally ill childrenPsychology. I. Title.
[R726.8.K79 1984] 155.937 84-23686

ISBN 0-684-83936-9

I
HOUSE CALLS AND HOSPITAL CALLS:
THE CHALLENGE TO HEAR OUR PATIENTS

II
THE USE OF DRAWINGS MADE AT SIGNIFICANT
TIMES IN ONES LIFE
BY GREGG M. FURTH, PH.D.

III
PARENT CARE: TOTAL INVOLVEMENT IN
THE CARE OF A DYING CHILD
BY MARTHA PEARSE ELLIOTT

IV
THE ISSUE OF SUDDEN DEATH

Living with Death and Dying was written at the insistent request of patients, readers, and parents of dying children. These persons are familiar with my work and previous writings, but they have asked for more help in understanding the different languages terminally ill adults and children use when they try to convey their inner knowledge and needs.

We have presented most of this material in our teaching tapes, which are available to hospitals and teaching institutions. The material, however, was not easily accessible to private individuals and families who are more comfortable reading a book rather than listening to tapes.

So, here it is, modified and with added material from those who have had the experience on a very personal basis. May it add comfort and courage to those who are still afraid to talk about something as natural as the birth process itself.

Both birth and death involve great changes and adjustment, often inconveniences and pain, but also joy, reunion, and a new beginning. If it were not for our inner knowledge that we are on this earth plane for a relatively short time, then why should we strive for perfection, for love and peace, if it were not for the desire to leave this place a little bit better, a little bit more human than when we entered it?

We make progress in our society only if we stop cursing and complaining about its shortcomings and have the courage to do something about them. It is painful to admit our own fears, sense of guilt and shame, inadequacy, and low self-esteem; however, it is the brave one who admits these, the strong one who will fight his own negativity, and the trusting and faithful one who will see the light at the end of the tunnel.

I dedicate this book to the brave who have had the courage to fight negativity both within themselves and thus in our society.

ELISABETH KBLER-ROSS

Summer 1980

T HE MATERIAL for this book comes from a decade of work with terminally ill adults and children whom we attended in hospitals, nursing homes, and, most important of all, in their own homes.

We have moved from institutional care of the dying to a new and healthier way of caring for them in their own environment; at home they are surrounded by their families and in control of their own needs and wishes, which is almost impossible to achieve in the best of hospitals.

Many of the readers will be familiar with my seminars on death and dying for health professionals in hospitals and the internationally held five-day workshops on life, death, and transition offered to professionals and lay people. These seminars and workshops have given physicians, clergy, counselors, nurses, and volunteers a tool to take back with them to facilitate their interactions with the critically and terminally ill. Our beginnings and lessons from the dying patients have been published in On Death and Dying and Questions and Answers on Death and Dying. For those who are not familiar with this material, the first chapters will repeat some of this material in order to present the remainder of the book in a more comprehensible fashion.

It is important to understand that the material herein is not really new. Yet there are millions of people who still have the illusion that a patient is better off if surrounded with an air of all is well; that is, if we visit terminally ill patients only with a smile on our face and cheerful, superficial conversation or silence. We have no problems getting them the very best in physical care and attention, but most often neglect their more painful emotional and spiritual turmoil.

Our work has included a total care of every need the dying may have. We have allowed them to be in control of the time and place of this care, of the amount of pain medication they require to allow them to remain conscious and alert, yet pain-free. We have respected their wishes to leave a hospital when there was no more active treatment available. We have helped in making arrangements to transport them home. We have always prepared the families for this change in their routine living and naturally spent time with the children who were affected by the sight, the smell (at times), and the communications and experiences of living in the same household with a dying parent, sibling, or other relative. We found it to be a profound and positive experience for most people, young and oldas long as our help and assistance was available and an occasional house call on my behalf alleviated the anxieties of the family.

L. was a thirteen-year-old girl whose big dream in life was to be a teacher. She was hospitalized during the summer and was found to have an abdominal tumor. After surgery the parents were reassured that everything malignant had been removed, and they were confident that their daughters life was no longer in danger. Before school started L. developed new symptoms, and by September she began to deteriorate rapidly. It became clear that she was full of metastasis and that she would no longer be able to return to school. In spite of the pleas of her parents, her physician refused to put her on Brompton mixture for pain relief, and a search for a new physician who was willing to use this most effective oral pain management was in vain. She was no longer able to be transported to Chicago, where her previous treatment was given. It was at this point that I was consulted and started to see the young patient and her family in their home.

The mother, an open, deeply religious and courageous woman, spent much time with her daughter and discussed frankly all issues that her child brought up. L. was in a comfortable bed in the living room so that she was able to participate passively in the activities of her family. Her father, a quiet man, did not speak much about her illness or impending death but showed his love and affection in little extra attention and would often return from work with a bouquet of roses for his oldest daughter.