Microsoft Word Elisabeth Kubler-Ross On Death And Dying doc

 
A family like this can best be helped by a reassuring physician who communicates that everything 
will be done that is possible and by an available pastor who visits the patient and his family as often 
as possible, making use of the resources the family has used in the past. 
 
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(P122) 
 
VIII 
 
Hope 
 
In desperate hope 1 go and search for her in all the corners of my room; I find her not. 
 
My house is small and what once has gone from it can never be regained. 
 
But infinite is thy mansion, my lord, and seeking her I have come to thy door. 
 
I stand under the golden canopy of thine evening sky and I lift my eager eyes to thy face. 
 
I have come to the brink of eternity from which nothing can vanish-no hope, no happiness, no 
vision of a face seen through tears. 
 
Oh, dip my emptied life into that ocean, plunge it into the deepest fullness. Let me for once feel that 
lost sweet touch in the allness of the universe. 
 
Tagore, from Gitanjali, LXXXVII 
 
We have discussed so far the different stages that people go through when they are faced with 
tragic news-defense mechanisms in psychiatric terms, coping mechanisms to deal with extremely 
difficult situations. These means will last for different periods of time and will replace each other or 
exist at times side by side. The one thing that usually persists through all these stages is hope. Just 
as children in Barracks L 318 and L 417 in the concentration camp of Terezin maintained their 
hope years ago, although out of a total of about 15,000 children under fifteen years of age only 
around loo came out of it alive. 
 
The sun has made a veil of gold 
 
So lovely that my body aches 
 
Above, the heavens shriek with blue 
 
Convinced I've smiled by some mistake. 
 
The world's abloom and seems to smile. 
 

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I want to fly but where, how high? 
 
If in barbed wire, things can bloom 
 
 
Why couldn't I? I will not die! 
 
1944, Anonymous "On a Sunny Evening" 
 
In listening to our terminally ill patients we were always impressed that even the most accepting, 
the most realistic patients left the possibility open for some cure, for the discovery of a new drug or 
the "last-minute success in a research project," as Mr. J. expressed it (his interview follows in this 
chapter). It is this glimpse of hope which maintains them through days, weeks, or months of 
suffering. It is the feeling that all this must have some meaning, will pay off eventually if they can 
only endure it for a little while longer. It is the hope that occasionally sneaks in, that all this is just 
like a nightmare and not true; that they will wake up one morning to be told that the doctors are 
ready to try out a new drug which seems promising, that they will use it on him and that he may be 
the chosen, special patient, just as the first heart transplant patient must have felt that he was chosen 
to play a very special role in life. It gives the terminally ill a sense of a special mission in life which 
helps them maintain their spirits, will enable them to endure more tests when everything becomes 
such a strain-in a sense it is a rationalization for their suffering at times; for others it remains a form 
of temporary but needed denial. 
 
No matter what we call it, we found that all our patients maintained a little bit of it and were 
nourished by it in especially difficult times. They showed the greatest confidence in the doctors 
who allowed for such hope-realistic or not-and appreciated it when hope was offered in spite of bad 
news. This does not mean that doctors have to tell them a lie; it merely means that we share with 
them the hope that something unforeseen may happen, that they may have a remission, that they 
will live longer than is expected. If a patient stops expressing hope, it is usually a sign of imminent 
death. They may say, "Doctor, I think I have had it," or "I guess this is it," or they may put it like 
the patient who always believed in a miracle, 
 
(P124) 
 
who one day greeted us with the words, "I think this is the miracle-I am ready now and not even 
afraid any more." All these patients died within twenty-four hours. While we maintained hope with 
them, we did not reinforce hope when they finally gave it up, not with despair but in a stage of final 
acceptance. 
 
The conflicts we have seen in regard to hope arose from two main sources. The first and most 
painful one was the conveyance of hopelessness either on part of the staff or family when the 
patient still needed hope. The second source of anguish came from the family's inability to accept a 
patient's final stage; they desperately clung to hope when the patient himself was ready to die and 
sensed the family's inability to accept this fact (as illustrated in the cases of Mrs. W. and Mr. H.). 
 
What happens with the "pseudo-terminal syndrome" patient who has been given up by his 
physician and then-after being given adequate treatment-makes a comeback? Implicitly or 

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explicitly these patients have been "written off." They may have been told that "there is nothing 
else we can do for you" or they may just have been sent home in unexpressed anticipation of their 
imminent death. When these patients are treated with all available therapy, they will be able to 
regard their comeback as "a miracle," "a new lease on life," or "some extra time I did not ask for," 
depending on previous management and communications. 
 
The relevant message that Dr. Bell ° communicates is to give each patient a chance for the most 
effective possible treatment and not to regard each seriously ill patient as terminal, thus giving up 
on them. I would add that we should not "give up" on any patient, terminal or not terminal. It is the 
one who is beyond medical help who needs as much if not more care than the one who can look 
forward to another discharge. If we give up on such a patient, he may give up himself and further 
medical help may be forthcoming too late because he lacks the readiness and spirit to "make it once 
more." It is far more important to say, "To my knowledge I have done everything I can to help you. 
I will continue, however, to keep you as comfortable as possible." Such a patient will keep his 
glimpse of hope and 
 
* See Bibliography. 
 
continue to regard his physician as a friend who will stick it out to the end. He will not feel deserted 
or abandoned the moment the doctor regards him as beyond the possibility of a cure. 
 
The majority of our patients made a comeback, in some way or another. Many of them had given 
up hope of ever relating their concerns to anyone. Many of them felt isolated and deserted, more of 
them felt cheated out of the opportunity of being considered in important decisions. Approximately 
half of our patients were discharged to go home or to a nursing home, to be readmitted later on. 
They all expressed their appreciation of sharing with us their concern about the seriousness of their 
illness and their hopes. They did not regard their discussions of death and dying as either premature 
or contraindicated in view of their "comeback." Many of our patients related the ease and comfort 
of their return home, after having settled their concerns prior to their discharge. Several of them 
asked to meet with their families in our presence before going home, in order to drop the façade 
and to enjoy the last few weeks together fully. 
 
It might be helpful if more people would talk about death and dying as an intrinsic part of life just 
as they do not hesitate to mention when someone is expecting a new baby. If this were done more 
often, we would not have to ask ourselves if we ought to bring this topic up with a patient, or if we 
should wait for the last admission. Since we are not infallible and can never be sure which is the 
last admission, it may just be another rationalization which allows us to avoid the issue. 
 
We have seen several patients who were depressed and morbidly uncommunicative until we spoke 
with them about the terminal stage of their illness. Their spirits were lightened, they began to eat 
again, and a few of them were discharged once more, much to the surprise of their families and the 
medical staff. I am convinced that we do more harm by avoiding the issue than by using time and 
timing to sit, listen, and share. 
 
I mention timing because patients are no different from the rest of us in that we have our moments 
when we feel like talking about what burdens us and times when we wish to think about more 
cheerful things, no matter how real or unrealistic they are. As long as the patient knows that we will 

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