Word
Gems
What is a
man but the sum of his thoughts?
Life
& Death:
- Dr. Elizabeth
Kubler-Ross'
- On Death and
Dying
- Editor's note: the essential thesis of the article below, man's denial of death,
is expressed in a bible verse, Eccl. 9. 5, explained
elsewhere on this site.
... It is inconceivable for our unconscious to imagine an actual ending of our own
life here on earth, and if this life of ours has to end, the ending is always attributed
to a malicious intervention from the outside by someone else. In simple terms, in our
unconscious mind we can only be killed; it is inconceivable to die of a natural cause or
of old age. Therefore death in itself is associated with a bad act, a frightening
happening, something that in itself calls for retribution and punishment.
One is wise to remember these fundamental facts as they are essential in understanding
some of the most important, otherwise unintelligible communications of our patients...
... It would take so little to remember that the sick person too has feelings, has
wishes and opinions, and has -- most important of all -- the right to be heard.
Well, our presumed patient has now reached the emergency room. He will be surrounded by
busy nurses, orderlies, interns, residents, a lab technician perhaps who will take some
blood, an electrocardiogram technician who takes the cardiogram. He may be moved to X-ray
and he will overhear opinions of his condition and discussions and questions to members of
the family.
- He slowly but surely is beginning to be treated like a thing.
He is no longer a person.
Decisions are made often without his opinion. If he tries to rebel he will be
sedated and after hours of waiting and wondering whether he has the strength, he will be
wheeled into the operating room or intensive treatment unit and become an object of great
concern and great financial investment.
He may cry for rest, peace, and dignity, but he will get infusions, transfusions, a heart
machine, or tracheostomy if necessary. He may want one single person to stop for one
single minute so that he can ask one single question-but he will get a dozen people around
the clock,
- all busily preoccupied with his heart rate, pulse,
electrocardiogram or pulmonary functions, his secretions or excretions but not with him as
a human being.
He may wish to fight it all but it is going to be a useless fight since all this
is done in the fight for his life, and if they can save his life they can consider the
person afterwards. Those who consider the person first may lose precious time to save his
life! At least this seems to be the rationale or justification behind all this--or is it?
- Is the reason for this increasingly mechanical,
depersonalized approach our own defensiveness? Is this approach our own way to cope with
and repress the anxieties that a terminally or critically ill patient evokes in us? Is our
concentration on equipment, on blood pressure our desperate attempt to deny the impending
death which is so frightening and discomforting to us that we displace all our knowledge
onto machines, since they are less close to us than the suffering face of another human
being which would remind us once more of our lack of omnipotence, our own limits and
failures, and last but not least perhaps our own mortality? ...
Cancer is still for most people a terminal illness, in spite of increasing numbers
of real cures as well as meaningful remissions. I believe that we should make it a habit
to think about death and dying occasionally, I hope before we encounter it in our own
life. If we have not done so, the diagnosis of cancer in our family will brutally remind
us of our own finality. It may be a blessing, therefore, to use the time of illness to
think about death and dying in terms of ourselves, regardless of whether the patient will
have to meet death or get an extension of life.
If a doctor can speak freely with his patients about the diagnosis of malignancy without
equating it necessarily with impending death, he will do the patient a great service. He
should at the same time leave the door open for hope, namely, new drugs, treatments,
chances of new techniques and new research.
The main thing is that he communicates to the patient that all is not lost; that
he is not giving him up because of a certain diagnosis; that it is a battle they are going
to fight together--patient, family, and doctor--no matter the end result. Such a patient
will not fear isolation, deceit, rejection, but will continue to have confidence in the
honesty of his physician and know that if there is anything that can be done, they will do
it together.
Such an approach is equally reassuring to the family who often feel terribly
impotent in such moments. They greatly depend on verbal or nonverbal reassurance from the
doctor. They are encouraged to know that everything possible will be done, if not to
prolong life at least to diminish suffering.
If a patient comes in with a lump in the breast, a considerate doctor will prepare her
with the possibility of a malignancy and tell her that a biopsy, for example, will reveal
the true nature of the tumor. He will also tell her ahead of time that a more extensive
surgery will be required if a malignancy is found. Such a patient has more time to prepare
herself for the possibility of a cancer and will be better prepared to accept more
extensive surgery should it be necessary.
When the patient awakens from the surgical procedure the doctor can say, "I
am sorry, we had to do the more extensive surgery." If the patient responds,
"Thank God, it was benign," he can simply say, "I wish that were
true," and then silently sit with her for a while and not run off.
- Such a patient may pretend not to know for several days. It
would be cruel for a physician to force her to accept the fact when she clearly
communicates that she is not yet ready to hear it.
The fact that he has told her once will be sufficient to maintain confidence in
the doctor. Such a patient will seek him out later when she is able and strong enough to
face the possible fatal outcome of her illness.
Another patient's response may be, "Oh, doctor, how terrible, how long do I have to
live?" The physician may then tell her how much has been achieved in recent years in
terms of extending the life span of such patients, and about the possibility of additional
surgery which has shown good results; he may tell her frankly that nobody knows how long
she can live.
- I think it is the worst possible management of any patient,
no matter how strong, to give him a concrete number of months or years.
Since such information is wrong in any case, and exceptions in both directions are
the rule, I see no reason why we even consider such information. There may be a need in
some rare instances where a head of a household should be informed of the shortness of his
expected life in order to bring his affairs in order. I think even in such cases a
tactful, understanding physician can communicate to his patient that he may be better off
putting his affairs in order while he has the leisure and strength to do so, rather than
to wait too long.
Such a patient will most likely get the implicit message while still able to
maintain the hope which each and every patient has to keep, including the ones who say
that they are ready to die. Our interviews have shown that all patients have kept a door
open to the possibility of continued existence, and not one of them has at all times
maintained that there is no wish to live at all.
When we asked our patients how they had been told, we learned that all the patients knew
about their terminal illness anyway, whether they were explicitly told or not, but
depended greatly on the physician to present the news in an acceptable manner...
Maintained denial does not always bring increased distress if it holds out until the end,
which I still consider a rarity. Among our two hundred terminally ill patients, I have
encountered only three who attempted to deny its approach to the very last. Two of these
women talked about dying briefly but only referred to it as "an inevitable nuisance
which hopefully comes during sleep" and said "I hope it comes without
pain." After these statements they resumed their previous denial of their illness.
The third patient, also a middle-aged spinster, apparently had used denial during most of
her life. She had a visible, large ulcerative type of cancer of the breast but refused
treatment until briefly before she died. She had great faith in Christian Science and held
onto this belief to the last day. In spite of her denial, one part of her must have faced
the reality of her illness since she did finally accept hospitalization and at least some
of the treatments offered to her. When I visited her prior to planned surgery, she
referred to the operation as "cutting part of the wound out so it can heal
better." She also made it clear that she wished only to know details regarding her
hospitalization "which have nothing to do with my wound."
Repeated visits made it obvious that she feared any communications from staff
members, who might possibly break down her denial, i.e., talk about her advanced cancer.
- As she grew weaker, her makeup became more grotesque.
Originally rather discretely applied red lipstick and rouge, the makeup became brighter
and redder until she resembled a clown. Her clothing became equally brighter and more
colorful as her end approached. During the last few days she avoided looking in a mirror,
but continued to apply the masquerade in an attempt to cover up her increasing depression
and her rapidly deteriorating looks.
When asked if there was anything we could do for her, she replied, "Come
tomorrow." She did not say, "Leave me alone," or "Don't bother
me," but
- left the possibility open that tomorrow might be the day that
her defenses would not hold up any longer, thus making help mandatory. Her last statement
was, "I guess I cannot make it anymore." She died less than an hour later.
Most patients do not use denial so extensively. They may briefly talk about the
reality of their situation, and suddenly indicate their inability to look at it
realistically any longer. How do we know, then, when a patient does not wish to face it
anymore? He may talk about relevant issues as far as his life is concerned, he may share
some important fantasies about death itself or life after death (a denial in itself), only
to change the topic after a few minutes, almost contradicting what he said earlier.
Listening to him at this point may seem like listening to a patient with a minor
ailment, nothing as serious as a lifethreatening condition. This is when we try to pick up
the cues and acknowledge (to ourselves) that this is the moment at which the patient
prefers to look at brighter, more cheery things. We then allow the patient to daydream
about happier things, no matter how improbable they may be. (We have had several patients
who daydreamed about seemingly impossible situations which-much to our surprise-became
true.)
What I am trying to emphasize is that the need for denial exists in every patient
at times, at the very beginning of a serious illness more so than towards the end of life.
Later on the need comes and goes, and the sensitive and perceptive listener will
acknowledge this and allow the patient his defenses without making him aware of the
contradictions. It is much later, usually, that the patient uses isolation more than
denial. He can then talk about his health and his illness, his mortality and his
immortality as if they were twin brothers permitted to exist side by side, thus facing
death and still maintaining hope.
In summary, then, the patient's fast reaction may be a temporary state of shock from which
he recuperates gradually. When his initial feeling of numbness begins to disappear and he
can collect himself again, his usual response is "No, it cannot be me."
- Since in our unconscious mind we are all immortal, it is
almost inconceivable for us to acknowledge that we too have to face death.
Depending very much on how a patient is told, how much time he has to gradually
acknowledge the inevitable happening, and how he has been prepared throughout life to cope
with stressful situations, he will gradually drop his denial and use less radical defense
mechanisms...
... In a way, then, this patient [a young mother with children] showed a
fluctuation between an almost total denial of her illness and a repeated attempt to bring
about her death. Rejected by her family, often overlooked or ignored by the hospital
personnel, she became a pitiful figure, a disheveled-looking young woman who sat
desperately lonely on the edge of her bed, clutching the telephone to hear a sound.
She found temporary refuge in delusions of beauty, flowers, and loving care which
she could not obtain in real life. She did not have a sound religious background to help
her through this crisis and required weeks and months of often silent companionship to
help her finally accept her death without suicide and without psychosis.
Our own reactions to this young woman were manifold. At first there was utter disbelief.
How could she pretend to be so healthy when she was so limited in her food intake? How was
she able to stay in the hospital and undergo all those tests if she was really convinced
of her well-being?
- We soon realized that she was unable to hear such questions
and proceeded to get to know her better by talking about less painful things.
That she was young and cheerful, that she had small children and a nonsupportive
family contributed much to our attempts to help her in spite of her prolonged denial. We
allowed her to deny as much as was necessary for her survival and remained available to
her during her whole hospitalization.
When the staff contributed to her isolation, we tended to be angry at them and made it a
routine to keep the door open, only to find it closed again on our next visit. As we
became more familiar with her peculiarities, they appeared less strange to us and began to
make more sense, adding to our difficulties in appreciating the nurses' needs to avoid
her. Towards the end it became a personal matter, a feeling of sharing a foreign language
with someone who was unable to communicate with others.
There is no question that we got deeply involved with this patient, beyond the usual
involvement of hospital personnel. In trying to understand the reasons for this
involvement, we also have to add that some of it was an expression of our frustration at
being unable to have the family play a more helpful role for this pathetic patient. Our
anger expressed itself perhaps in our taking on the role of the comforting visitor which
we expected the husband to be. And--who knows--perhaps this need to extend ourselves under
such circumstances was an expression of an unconscious wish that we may not be rejected
one day if fate should have something similar in store for us. After all, she was a young
woman with two small children-in retrospect I am beginning to wonder if I was not a bit
too ready to support her denial.
This shows the need to examine more closely our own reactions when working with patients
as they will always be reflected in the patient's behavior and can contribute a great deal
to his well-being or detriment.
- If we are willing to take an honest look at ourselves, it can
help us in our own growth and maturity. No work is better suited for this than the dealing
with very sick, old, or dying patients...
When the depression is a tool to prepare for the impending loss of all the love
objects, in order to facilitate the state of acceptance, then encouragements and
reassurances are not as meaningful. The patient should not be encouraged to look at the
sunny side of things, as this would mean he should not contemplate his impending death. It
would be contraindicated to tell him not to be sad, since all of us are tremendously sad
when we lose one beloved person. The patient is in the process of losing everything and
everybody he loves. If he is allowed to express his sorrow he will find a final acceptance
much easier, and he will be grateful to those who can sit with him during this stage of
depression without constantly telling him not to be sad. This second type of depression is
usually a silent one in contrast to the first type, during which the patient has much to
share and requires many verbal interactions and often active interventions on the part of
people in many disciplines. In the preparatory grief there is no or little need for words.
It is much more a feeling that can be mutually expressed and is often done better with a
touch of a hand, a stroking of the hair, or just a silent sitting together. This is the
time when the patient may just ask for a prayer, when he begins to occupy himself with
things ahead rather than behind. It is a time when too much interference from visitors who
try to cheer him up hinders his emotional preparation rather than enhances it...
It was unacceptable to him to lose his wife. He could not comprehend that she did
not have the need to be with him any longer. Her need to detach herself, to make dying
easier, was interpreted by him as a rejection which was beyond his comprehension. There
was no one there to explain to him that this was a natural process, a progress indeed, a
sign perhaps that a dying person has found his peace and is preparing himself to face it
alone...
Among all of the many chaplains, ministers, and rabbis and priests who have
attended the seminar, I have seen few who avoided the issue or who showed as much
hostility or displaced anger as I have seen among other members of the helping
professions.
- What amazed me, however, was the number of clergy who felt
quite comfortable using a prayer book or a chapter out of the Bible as the sole
communication between them and the patients, thus avoiding listening to their needs and
being exposed to questions they might be unable or unwilling to answer.
Many of them had visited innumerable very sick people but began for the first
time, in the seminar, really to deal with the question of death and dying. They were very
occupied with funeral procedures and their role during and after the funeral but had great
difficulties in actually dealing with the dying person himself.
They often used the doctor's orders "not to tell" or the ever existing
presence of a family member as an excuse for not really communicating with the terminally
ill patients. It was in the course of repeated encounters that they began to understand
their own reluctance in facing the conflicts and thus their
- use of the Bible, the relative, or the doctor's orders as an
excuse or rationalization for their lack of involvement...
In great contrast to the staff, the patients responded favorably and
overwhelmingly positively to our visits. Less than two percent of the questioned patients
flatly refused to attend the seminar, only one patient out of over two hundred did not
ever talk about the seriousness of her illness, problems resulting from her terminal
illness, or fears of dying... All other patients welcomed the possibility of talking with
someone who cared. Most of them tested us first in one way or another, to assure
themselves that we were actually willing to talk about the final hours or the final care.
The majority of patients welcomed a breakthrough of their defenses, were relieved when
they did not have to play a game of superficial conbversation when deep down they were so
troubled with real or unrealistic fears...
Earlier conflicts and defense mechanisms allow us to predict to a certain degree
what defense mechanisms a patient will use more extensively at the time of this crisis.
- Simple people with less education, sophistication, social
ties, and professional obligations seem in general to have somewhat less difficulty in
facing this final crisis than people of affluence who lose a great deal more in terms of
material luxuries, comfort, and number of interpersonal relationships. It appears that
people who have gone through a life of suffering, hard work, and labor, who have raised
their children and been gratified in their work, have shown greater ease in accepting
death with peace and dignity compared to those who have been ambitiously controlling their
environment, accumulating material goods, and a great number of relationships but few
meaningful interpersonal relationships which would have been available at the end of
life...
- Religious patients seemed to differ little from those without
a religion.
The difference may be hard to determine, since we have not clearly defined what we
mean by a religious person. We can say here, however, that we found very few truly
religious people with an intrinsic faith. Those few have been helped by their faith and
are best comparable with those few patients who were true atheists. The majority of
patients were in between, with some form of religious belief but not enough to relieve
them of conflict and fear.
When our patients reached the stage of acceptance and final decathexis, interference from
outside was regarded as the greatest turmoil and prevented several patients from dying in
peace and dignity. It is the signal of imminent death and has allowed us to predict the
oncoming death in several patients where there was little or no indication for it from a
medical point of view...
The Silence that Goes Beyond Words
There is a time in a patient's life when the pain ceases to be, when the mind slips off
into a dreamless state, when the need food becomes minimal and the awareness of the
environment all but disappears into darkness. This is the time when the relatives walk up
and down the hospital hallways, tormented by the waiting, not knowing if they should leave
to attend the living or stay to be around for the moment of death. This is the time when
it is too late for words, and yet the time when the relatives cry the loudest for
help-with or without words. It is too late for medical interventions (and too cruel,
though well meant, when they do occur), but it is also too early for a final separation
from the dying. It is the hardest time for the next of kin as he either wishes to take
off, to get it over with; or he desperately clings to something that he is in the process
of losing forever. It is the time for the therapy of silence with the patient and
availability for the relatives.
The doctor, nurse, social worker, or chaplain can be of great help during these final
moments if they can understand the family's conflicts at this time and help select the one
person who feels most comfortable staying with the dying patient. This person then becomes
in effect the patient's therapist. Those who feel too uncomfortable can be assisted by
alleviating their guilt and by the reassurance that someone will stay with the dying until
his death has occurred. They can then return home knowing that the patient did not die
alone, yet not feeling ashamed or guilty for having avoided this moment which for many
people is so difficult to face...
- Editor's note: This section began with
Ross' comment: It is inconceivable for our unconscious to imagine an actual ending of
our own life here on earth. I'm beginning to understand the depth of this statement.
-
- For example, popular movies such as The Sixth Sense
prompt the question, "How is it possible for some of the dead not to know
that they are dead?" It is a fair question; but the answer to this, I'm coming to
sense, is the same answer to: "Why does a 75 year-old man, with a heart condition,
venture out to remove snow from his driveway, only to die with shovel in hand? Doesn't he know
that he's a sick man?" Or, how about the 55 year-old who plays touch football with
his grandchildren, earning a sprained shoulder for his trouble, requiring many months of
therapy? Or the 45 year-old, sporting a hairy, open-necked shirt, neck adorned with gold
chain, suitable attire for cruising Main Street in his canary-yellow convertible Corvette,
all in hopes of attracting college co-eds? Don't these balding souls, as well, know
that their time has passed?
-
- It seems increasingly clear to me that the sense of immortality
stamped upon our sub-conscious minds, after death -- and before, at all ages -- refuse to
accept the transitoriness of physical existence.
-
- The terminally ill, of course, grieve their present and impending
loss; but, it becomes clear, that all of us, at all age levels, as we grow older and find
that opportunities and bodily abilities begin to wane -- unless our spiritual growth
allows us to see things as they are -- experience the horrors of the death process, be
they subtle, small symptoms or dramatic threats; we naturally recoil from all of this and
refuse -- at least, initially -- to accept the reality of any of it.
-
- Messages from the Other Side instruct us that this ephemeral,
fleeting life, not the glorious next, is to be seen as death, a kind of living,
suffering-death -- but we naturally deny any of this at all stages of our residency here!
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