_______ translation by HIRAGA Midori________
Table of Contents
Introduction
-1. ALS: Amyotrophic Lateral Sclerosis
-2. Questions on ALS
-3. Reading the written materials
-4. Recording the names
-5. The limitation
-6. How I wrote this book, and how it should be read
Chapter 1. Mistakes
-1. What they were told as "prognosis"
-2. What they read in the written materials
-3. Those who lived longer than expected
-4. Thinking why?
Chapter 2: Incurable - yet
- 1. No cure is yet available for ALS
- 2. New medications tried in recent years
- 3. Folk remedies and others
- 4. The price you pay in return
- 5. Hospitals having incurable patients
- 6. What's not done while trying to cure incurables
- 7. Appendix: On Sociology of Medicine
Chapter 3. Finding out the diagnosis
- 1. What I cannot find out about finding out
- 2. What Doctors know and do not know
- 3. What Doctors can tell and cannot tell
- 4. Finding out the diagnosis from documents
- 5. Finding out the diagnosis from other sources
- 6. How to tell the patients
- 7. Informed family
- 8. How patients accept the diagnosis of ALS
Chapter 4. About notifying ALS
- 1. How patients accepted the diagnosis
- 2. Is it better to know? or not to know?
- 3. Some particular aspects about ALS
- 4. Who should notify the patient, and how?
- 5. The position of the family
- 6. About being "neutral"
Chapter 5. About ventilators
- 1. About the "choice"
- 2. When the time comes
- 3. The family is asked for the decision
- 4. The patient decide by oneself
- 5. Changing mind about ventilators
- 6. The life with a ventilator
- 7. Can they decide it as long as they know?
Chapter 6. Some records of what happened
- 1. A short history of ventilators
- 2. "Hei-min" in 1978
- 3. More people began to use ventilators
Chapter 7. About KAWAGUCHI Takehisa - 1
- 1. A short history of his life
- 2. About "artificial" prolonging of life
- 3. Having the consciousness and how to communicate it
- 4. The Japan A. L. S. Association
Chapter 8. About KAWAGUCHI Takehisa - 2
- 1. The position of pain
- 2. Getting close to death
- 3. Preaching of "good death"
- 4. He would have prolonged his life, if...
- 5. His death in 1994
Chapter 9. Living beyond it
- 1. Danger
- 2. Accepting the support of machines
- 3. Doing nothing
- 4. Closed
- 5. Feeling the outside world
- 6. Sending out
Chapter 10. Living beyond it - 2
- 1. To live
- 2. Support to live
- 3. Support to live, after 2000
- 4. "Medical treatment" not allowed for non-medical people
- 5. Strategy
Chapter 11. Changing the position of death
- 1. "Requested Death" 1994
- 2. Changes in 20 years
- 3. The reality rejecting the patients' will to live
- 4. Speaking out to the world
- 5. Summary: Nearing the death or turning back
Chapter 12. Living yet further beyond it
- 1. Self decision
- 2. Taking the ventilator off
- 3. The difference between taking it off and not putting it on
- 4. Conditions
- 5. Values
- 6. The role of affirmation
- 7. Locked-in
- 8. The possibility to communicate
- 9. Feeling the world around
- 10. Appendix: The freedom to die
- 11. People surrounding the patients: are they irresponsible?
- 12. Think again - the possibility to change your mind
Postscript