On Death and Dying
Elisabeth Kubler-Ross (Discussant), Stanford Wessler and Louis V
Avioli (Editors)
DR
J. RUSSELL LITTLE, Chief,
Division of Infectious Disease, the Jewish Hospital of St. Louis and
Associate Professor of Medicine and Microbiology, Washington
University School of Medicine: Our guest this morning is Elisabeth
Kubler-Ross, MD. Dr. Ross has become something of a celebrity since
the feature story in Lire
magazine (Nov 21, 1969; p 36) concerning her and her work and the
appearance of her recent book entitled On Death and Dying.' The
book provides a fascinating account of an experiment in teaching and
therapy concerned with the emotional problems of seriously ill and
dying patients. We have decided to dispense with the traditional case
presentation today even though Dr. Ross could discuss any of our
hospitalized patients with a terminal disease. Instead we shall turn
over the entire hour to her discussion of her approach to the
emotional problems of dying patients.
DR. ELISABETH Kubler-ROSS,
Medical Director, South Cook County Mental Health and Family
Services, Chicago Heights, III was asked this morning why this topic
on death and dying has taken such a long time to come into public
awareness. Dying and dignity have been with us for as long as there
has been mankind. Why is it now that we have to give seminars and
workshops on death and dying? Has it taken us all these decades to
begin to be aware that we are finite, and we have to treat dying
patients?
Psychiatric Basis
I
believe I shall talk like a psychiatrist for about five minutes and
try to explain what death means and what the fear of death really
represents. In terms of the unconscious, we cannot conceive of
our own death. This is very
important to understand. I believe that it shall happen to everybody
in this room, but not to me. If I am forced to conceive of my own
death, then I can only conceive of it as a malignant intervention from
the outside. I cannot possibly conceive of dying of old age at home in
my own bed. If I have to die, in my unconscious, I can only conceive
of it as being killed. I am not afraid of death per se, but rather the
destructive catastrophic death that hits me from the outside when I
am not prepared. Perhaps the most complicated thing to understand is
that I cannot differentiate between the wish and the deed. In the
Bible it says somewhere that to lust after your neighbor's wife is as
bad as actually doing it. In terms of my reality, testing this is
actually absurd. I can have all sorts of fantasies of what I would
like to do, but as long as I don't do it, that is satisfactory. In
terms of my unconscious that is not acceptable. If you understand
this, then you can see what is relevant and what is important to
understand, especially in the death of a parent of a young child.
Little children have a peculiar concept of death. They regard death
not as a permanent happening, but as a temporary happening. Every
normal 4- or 5-year-old child who is angry at mommy wishes mommy to
drop dead. That is very normal behavior. Children think of it when
they are angry, when they feel small and impotent and helpless, and
they wish mommy would drop dead only to make her get up again when
they are hungry and they want a peanut butter-and-jelly sandwich. The
trouble is that the little 4- or 5-year-old boy may really lose his
mother by death, separation, or divorce. He then feels that he has
actually contributed to her death. This thinking shows that he cannot
yet differentiate between his wish to kill mommy and whether he has
actually done it. If we understand this, then we appreciate many of
the complications of dying patients who sometimes, decades later in
their old age, moan and groan and cry and have a lot of somatic
complaints which we cannot understand medically. When we talk to
these people, we see that they have a peculiar sense of guilt; they
feel that they have committed a crime and they have to be punished
before they die. These patients suffer far beyond our medical
understanding.
Our Death-Denying Society
Why
is dying different now? People have the same kind of unconscious
thoughts and fantasies that they had years ago. What has changed, I
think, is our society, which has become increasingly a death-denying
society. Half of our patients now die in hospitals, as compared to 50
years ago when people died at home in a familiar environment with a
little bit of chicken soup instead of transfusions, with their
families around them instead of interns, residents, and laboratory
technicians. People who are dying in a hospital are attached to
several pieces of monitoring equipment and we, as physicians, pay a
lot of attention to these gadgets. Sometimes we feel very
uncomfortable when a dying patient looks at us and would like to ask a
question in regard to dying or to some unfinished business or to
fears and fantasies. In Switzerland, where I am originally from, there
is no embalming. They do not have drive-in funeral homes such as we
are beginning to have in the United States where you drive up in
your sports car, looks through a
glass window, sign a guest book, and take off. All of this is an
attempt to deny that people die. We have a society where we deep
freeze people and promise at high cost to defrost them in 50 or 100
years. We have had questions from widows about whether they are
eligible for social security, or if they are allowed to get married
again. In this sense, people use denial that their next of kin are
really dead.
Joseph Matthews has provided a
beautiful description of the death denying society and if you will
bear with me I will read just one page to give you an even better
description of what I mean by a death-denying society:
To symbolize the dignity of the
father's death the family decided to clothe the father in a pine box
and rest him in the raw earth. Having been told that caskets ranged
from one hundred to several thousand dollars, they asked for the one
hundred-dollar coffin. "What $100.00 coffin'." replied the astonished
undertaker.
"Why, the one you mentioned." "Oh
no, caskets begin at $275.00." "Did you not mention a $100.00 coffin?"
The persistent wishes of the family were met and the pine box was
selected. Later Matthews describes his experience after his father
had been prepared by the undertaker:
My father was 92. In his last few
years he bad wonderfully put chiseled wrinkles I had helped to put
them there. His cheeks were deeply sunken, his lips pale: he was an
old man. There is a kind of glory in the face of an old man, but not
so with the stranger lying there. They had my papa looking like be was
52 They had put cotton in his cheeks and had erased the best wrinkles
His lips were painted. He looked ready to step before the footlights
of a matinee performance. I fiercely wanted to pluck out the cotton,
but was afraid_ At least the make-up could come off. I called for
alcohol and linens and a very reluctant mortician brought them to me.
I began the restoration. As the make-up disappeared, the stranger
grew older. He never recovered the looks of his 92 years, but in the
end the man in the coffin became my papa.
Later he
describes his experience at the cemetery:
I say
I smelled that fresh earth, but there was none to be seen. What I did
see was difficult to believe. I mean that green stuff. Someone had
come before us and covered that good raw earth, every part of it,
with green stuff. Every scar of the grave was concealed under
simulated grass just as if nothing bad been disturbed here-just as if
nothing was going on here, just as if nothing were happening. What an
offense against nature, against history, against papa, against us,
against God.
It
goes on, but I shall stop here. You have to ask yourself why we have
to conceal the grave, why we have to cover up that good earth with
artificial greens, why we have to pretend that nothing is happening.
You must understand that the fear of death is the fear of a
catastrophic happening, a catastrophic destructive force that destroys
us from the outside. Then we also have to look at death in the past
and death in the present. In the old days death also came as a
catastrophic happening in the form of epidemics. It erased populations
of whole villages, but it was not manmade. In times of war you faced
your enemy face-to-face and had a chance to kill rather than to be
killed. These things have changed. In the past, epidemic disease was
the killer; now we have developed antibiotics, vaccines, all sorts of
things that can master the old types of death. In our fear of death we
have also created weapons of mass destruction. We now have weapons
that you cannot defend yourself against physically. We cannot see,
smell, or hear an enemy and I’ am thinking of chemical warfare,
bacteriological warfare, and means of mass destruction, all of which
are man-made. We are afraid, we are guilty, and still hope "it shall
happen to thee and to thee but not to me'." I think this is the reason
why this society, especially at this time, is using such a mass
denial. We live in the illusion that, since we have mastered so many
things, we shall be able to master death too.
Physicians' Reactions to Dying Patients
How does
this affect you as physicians? How does this affect our patients? I had
a glimpse of this 42 years ago through a chance happening. Some theology
students knocked at my door and asked me if 1 would help them to write a
paper on a crisis in human life. Several had chosen dying as the biggest
crisis man had to face, but they were stuck. They did not know how to do
research on dying. You cannot experience it, you cannot verify it. I
suggested that one way that you could really collect some data and
understand it was by getting close to dying patients and asking them to
be our teachers. I had a similar experience some years earlier when I
tried to understand what it is like to be schizophrenic. I spent two years
in the state hospital where I sat with schizophrenic patients and asked
them what is it like, how did it start, what are the changes, what does it
feel like, until I had the feeling that I really knew what it was like to
be a schizophrenic from the patient's point of view. Because I had this
good learning experience, I recommended the same kind of methods to my
theology students.
I
promised them that I would interview dying patients and that as they
would become more comfortable during the interviews, I would drop out and
let them continue the dialogue until they had enough data. A week later,
after asking numerous people, there was not a single dying patient in that
600-bed hospital'. There was just nobody dying. When I pushed, I was given
all sorts of rationalizations. These patients were too sick, too weak, too
tired, or "they don't feel like talking." Occasionally I was told that if
I talked to patients about dying they would jump out the window. It was
extremely difficult during the first year. It took an average of ten hours
a week to get permission to see a single terminally ill patient. In all
fairness I must say that I was new at the University of Chicago, and so
the physicians had no assurance that I would not cause trauma or that I
would be tactful. But this same kind of resistance I have also seen in
Colorado; it was not associated with the University of Chicago alone.
When we finally obtained permission to see a patient, he was an old man
who was ready to talk. He put his arms out and said please sit down now. I
told him, "No, not now," because my students were not with me. My needs as
a teacher prevented me from seeing his needs. I described to the students
the next day his outstretched arms, his pleading eyes, how he emphasized
the now. The next day when I came with the students he was in oxygen, he
could hardly talk, and the only thing he was able to say was, "thank you
for trying anyway." He died about half an hour later. This was our first
and most difficult patient, because of our own feelings, which prevented
us from really listening to his needs.
We
decided we would meet in my office and talk to each other about what we
called our "gut reaction"- how we really
felt about this type of work, about seeing these kinds of patients, and
about the reception we would get from the patients. One of the students,
who was as white as a bed sheet, said, "Oh, I'm not afraid of death," and
the other students questioned him as to why he was so pale. They wanted
to know why he was the only one who denied his fear. He said that he had
been the hospital student chaplain in a state hospital the year before and
that he had been assigned to a ward where a patient was dying. He had
walked into the ward and said (I am quoting him almost verbatim now): "I
yelled at the peak of my voice, 'God is love, God is love' until the
patient dropped dead." This was his proof that he was not afraid'. I told
him that when I was a little girl in Switzerland, I had to go down to the
wine cellar to get a bottle of wine, and the darker the cellar became, the
louder I yodeled. That experience reminded me of him.
What I am trying to say is that after
each patient interview, we tried not only to listen to the patient, but
also to ourselves, to our own reactions; we tried to get to know
ourselves better. In these after-interview discussions, we analyzed how
we really reacted-when we had some tender thoughts, and when we had some
difficulties. We also learned to become more sensitive, not only to the
patients, but to ourselves and to our own needs. Dr. Wall described
beautifully in his book on the dying patient how a social worker was faced
for the first time with a dying patient and what her reactions were. He
said every time she entered the patient's room, she felt strong feelings
of guilt. She was going to live, while he, of her own age, was going to
die She knew he wanted to talc to her, but she always turned the talk into
a little joke or into some evasive reassurance, which had to fail. The
patient knew and she knew because he saw her desperate attempts to escape:
he took pity on her and kept to himself what he wanted to share with
another human being. So he died and did not bother her.
We have interviewed more than 400
patients during the last four years. We have seen many times that patients
want to talk and that they would very much like to share their thoughts
with another human being. It is very difficult sometimes to try to do
that. When we come in, that we would like them to be our teacher that we
would like to know what it is like to be very sick, and sometimes we use
the word dying. Many of our patients respond like we are opening flood
gates. They share with us things that we were never aware of.
I think the most important thing that we
have learned, and I am summarizing a bit now, is that all our patients
know when they are terminally ill, whether they have been told or not. To
me this is a very consoling thought. They not only know when they are
seriously ill, but patients can even tell you the approximate day of their
death, right up to their actual demise. They will tell you goodbye and you
know this is the last time you will see them. This is also true for
children. We asked our patients the question that we are most often asked,
and that is, would the patient have liked to be told. Two-fifths of our
patients had never been told, although they knew it anyway after a while.
Our patients usually told us that they would like to be told if it is
serious, but not without hope. Hope for the healthy and the living is a
very different thing. We tend to forget that sometimes. Hope for the
living is always associated with cure, treatment, and, if that is not
possible, a prolongation of life and perhaps relief of pain and
suffering. When a patient says to you, "I hope the research laboratories
work on a new drug and I am the first one to get it and by some miracle I
am going to walk out of this hospital," that is hope prior to the final
stage. When the same patient then, suddenly, a few days later, looks at
you and says, "I hope my children are going to make it," then you know
that this patient has changed not to the kind of hopes that dying patients
express, which are very reasonable, very appropriate, and not
unrealistic. It is not wise at this point to tell them, "Oh, come on now,
you are going to make it, you are going to get well." I think at this
point we should support them, encourage them, and reinforce the hope that
the patient expresses.
Stages between
Awareness of Serious Illness and Death
Patients
go through five stages between their awareness of serious ill ness and
their death, if they have a minimal amount of time available. Most
patients respond with shock and denial when they are told that they have a
serious illness. This may last from a few seconds to a few months. Most of
the patients we interviewed had dropped their denial; only three, less
than 1% maintained it to the very end. Patients begin to see, when they
are seriously ill, that the family comes in and does not know what to talk
about and becomes estranged. Someone may come in with a red face and
smile. Others may change their conversation a bit; they may talk more
about a triviality because of their discomfort. Patients accept quickly
that things are not at all perfect. When the patient cannot maintain his
denial anymore, he will become difficult, nasty, demanding, criticizing;
that is the common stage of anger. How do you respond to one who complains
and criticizes everything you do? You may tend to withdraw and not deal
with him anymore. What else can you do? You can avoid him, you can stick
the needle in a bit farther-not consciously-but when you are angry you
touch patients differently. We can measure some of these responses. In
California some investigators measured the response time between patients
ringing for the nurse and the nurse actually coming into the room. They
showed that patients beyond medical help, terminally ill patients, had to
wait twice as long as other patient` for the nurse to respond. This
behavior should not be judged; it should be understood. It is very
difficult to remember that members of the helping professions, who work
hard all day, may have a difficult job coming into the dying patient's
room. In the first place, the professional is uncomfortable; second, she
is worried that the patient may ask how long he has to live or all sorts
of unpleasant questions, and then, if the nurse does something for the
patient, he may begin to criticize her. The nurse comes in and shakes the
pillow, and the patient says, "I just wanted to take a nap, can't you
leave me alone." When you don't shake the pillow, the patient remarks,
"why can't you ever straighten up my bed?" Whatever you do is criticized.
Such patients are very difficult to manage and the families-suffer
tremendously because, when they come in and visit, they are always too
early, too late, or there are not enough people, or too many people.
Someone has to do something for these patients, to facilitate life for
everybody concerned. It is important to
understand that these patients are not angry with the nurse or the family.
(The more vibrant the nurse is when she comes into the patient's room,
the more energetic she is, and the more she is going to get through to the
dying patient. In a way she should be able to accept the anger as a
compliment, because what the nurse reminds the patient of is functioning
health, ability to go to work, to go for a coffee break, all those things
that the patient is about to lose. Because the nurse reminds the patient
of all these things and because he is desperately attempting to deny that
he is dying, he becomes angry and says in effect, „Why me?" But he is also
asking, "Why couldn't this happen to Joe Blow or somebody else?" of the
nurse can put fuel into the fire-, if she can help hire to express this
anger, if she car, permit him to ask the question, "Why- me?" without the
need to answer it, then she will
have a much more comfortable patient almost immediately we interviewed a
young patient who was dying. She was in my office and looked completely
numb and I asked her if she felt like screaming. She looked as if she were
on the verge of an explosion. She asked if we had screaming rooms in
hospitals. I said no, we had chapels. "No, this is wrong," she said,
"because in chapels we have to pray and be quiet and I need just to do the
opposite. I was sitting out in the car yelling at God and asking him, 'Why
did you let this happen to me?' "I encouraged her to express this in my
office and to cry on my
shoulders. They never scream as loud as they think they will.
If you can help patient`,
express the question, "Why- me?" you can help them express
their rage and anger, then your patients become more comfortable and ring
for the nurse less often and stop nagging and complaining. Sometimes they
even quickly become much more comfortable patients and we wonder what
has happened to them ?"
That is often when they reach the stage
of bargaining. In the bargaining they may pray for another year to live;
they would donate their kidneys or their eyes, or they may become very
good people and go to church every Sunday. They usually promise something
in exchange for extension of life. Some of the promises are not made to
God, but to someone on the hospital staff. W e had a woman who asked to be
relieved of some of her tremendous pain for one day so that she would not
be dependent on injections around the clock. She said she would just love
to go home one more day and the reason for this was that her favorite son
was getting married. We tried everything, and finally we were able to
teach her self- hypnosis to
relieve her pain. She left the hospital and looked like a million
dollars. She attended her Bor.'s wedding. I was curious about patients who
only ask for one single day; how do they react when their bargaining time
is up? It must be extremely difficult. I waited for her, she saw me in the
hallway and she was not happy to see me at all. Before I could ask her a
question, she said "Dr. Ross don't forget, I have another son.” This is
the most typical part of bargaining. Promises are never kept; patients
say, "If I could live just long enough for my children to go through high
school," and then they add college, and then they add I just want a
son-in-law, and then they would like to have a grandchild, and it goes on
and on. If, in the denial stage,
they say „No, not me then in the anger stage they say, "Why me," and in
the bargaining stage they say, "Yes me, but." When they drop the "but," it
is, "Yes me." Then the patient becomes very- depressed.
There are
two kinds of depression and it is important to understand the two
different kinds. The first type is a reactive depression in which
the patient cries when he talks about it, and mourns the losses which he
has experienced. Later on he becomes quiet and depressed. When you enter
his room, you see a man crying and he doesn't say what he is crying about.
It is very difficult to accept such behavior over a long period of time.
What does the physician do when he enters the room of a patient who is
crying, especially if it is a man? This is one area in which men have a
much more difficult time than women. The physician may be quiet. Many
physicians go into the room and give the patient a pat on the back and
say, "Come on, it is not so bad." «-e try to cheer them up
because, as physicians, we cannot tolerate crying patients very well. The
reason our tolerance is low is not because of the patient; it is rather
because of our own inability to tolerate depressed patients over a long
time. Sometimes we request a psychiatric consultant, which is not
appreciated by most patients. It is an inappropriate request because the
patient's response represents normal, not abnormal, behavior.
If I were
to lose one beloved person, I would be allowed to mourn and everyone here
would respect that as being socially acceptable. But who has the courage
to face not only the loss of one person, but the loss of everybody he has
ever loved? It is a thousand times mores sad, and takes much more courage
to face. What we should be trying to do is to tell our patients that it
takes a man to cry and that we mean it completely and willfully. We
should help them express their grief, which, in fact, is a preparatory
grief. It is not mourning and grieving over things lost; rather, it is a
grieving and mourning over impending loss. The patient is beginning to
separate himself from the people that he has to leave in the near future.
This is what we call preparatory grief. If the physician can help his
patient through a preparatory grief, the patients will ask once more to
see the relatives, then the children, and at the very end, only one
beloved person, who is usually husband or wife and, in the case 9J
children, naturally, the parents. This is what we call the stage of
diathesis, when the patient begins to separate, when he begins to feel no
longer like talking; when he has finished all his unfinished business;
when he just wants the companionship of a person who is comfortable, who
can sit and hold his hand. 1t is much more important than words in this
final stage. If the physician can help the patient express his rage and
his depression and assist him sincerely through the stage of bargaining,
then most patients will be able reach the stage of acceptance. It is
resignation-there is a big difference. Resignation, I think, is a
bit like giving up. It is almost a defeat (A stage of acceptance is
almost beyond any affect. It is the patient who has said, "My time comes
very close now and it is all right."
A woman
who was always hoping for a miracle drug that would cure her suddenly
looked with an almost beaming face and said, "You know, Dr. Ross, a
miracle has happened." I said, "What miracle?" and she replied, "The
miracle that I am ready to go now and it is not any longer
frightening." This is the stage of
acceptance. It is not happy; the time is rarely ever right. People almost
al ways want to live, but they can be ready for death and they are not
petrified anymore. They have been able to finish their business.
Even
children, depending on age, can show these stages, but to much less of an
extent than adults. Very small children are only afraid of separation.
They have no real concept of death yet. When they are a bit older, the
added fear is one of mutilation. Later on they see death as a man whom
they run from at night-a bad man; they want the lights on at night, as
they are afraid of darkness. Later on they realize that death is not a
temporary but a permanent happening. They begin to see it after the age
of 9 years or so as biological force, almost like grown ups. Sometimes
children talk about death and dying, too-not in words, but in pictures. A
little boy tried to paint what be felt like. He drew a huge tank and in
front of the barrel was a tiny, little figure with a stop sign in his
hand. This to me represents the fear of death, the fear of the
catastrophic, destructive force that comes upon you and you cannot do
anything about it. If you can respond to him by saying it must be terrible
to feel so tiny and this thing is so big, he may be able to verbally
express a sense of smallness or impotence or rage. The next picture he
drew was a beautiful bird flying up in the sky. A little bit of its
upper wing was painted gold. When-he was asked what this was,
the boy said it was the peace bird flying up into the sky with a little
bit of sunshine on its wing. It was the last picture he painted before he
died I think these are picture expressions of a stage of anger and the
final stage of acceptance.
Comment
DR. Little:
I wonder if I could urge you to tell a story that you told
yesterday afternoon concerning the reaction of the nurse in encouraging
patients to achieve a state of acceptance of death.
DR. Ross: Many people wonder
whether all patients should die in a state of acceptance. Somebody once
asked me that, and I said you try to elicit the patient's needs. One nurse
in the audience arose very angrily. "I have been angry and a
rebel all my life and I
hope I can die that way." My answer to her was, "I hope they let you die
that way and not sedated to keep you 'nice, quiet, and peaceful."' It is
very important to remember that the patients who have used denial all
their lives may want denial and may die in a stage of denial. W e should
not project our own values onto the patient. The "stages of dying" affect
not only terminally ill patients. You can apply these lessons to everyday
living.
If a man
loses a girlfriend, he may deny it at first; then he becomes angry at the
other suitor. Then be sends her some flowers to bargain, and if he cannot
get what he wants, be becomes depressed. Eventually, he reaches the stage
of acceptance, when he finds another girlfriend.
DR. Jerome D. Cohen:
Were there any differences between the patients who were told by
their physicians about their fatal illness as opposed to those who were
not? What guidelines would you recommend to physicians in determining
whether the patient should be told or not?
Dr. Ross: I could tell after
a while whose physician the patient was by the degree of comfort
experienced by the patient. I did not even have to ask anymore. I do not
believe the variable is whether or not they have been told. The variable
is how comfortable the physician is in facing the dying patient. We had,
at our institution, one surgeon who was particularly effective in this
area. I think that he conveyed to them verbally or nonverbally the belief
that he would stay with them until the end. The patients were able to pick
this up. It is something that is more important than anything else. It is
a conviction that the doctor is going to stick it out no matter what. He
always did that. The patients knew that, even though there was no more
possible surgery or medical treatment, he would still come to see them
and care for them. Those patients had it much easier. In fact, we hardly
ever got referrals. We sometimes went to see them because we needed some
"good patients" who were not troubled all the time. I am in favor of
telling patients that they have a serious illness because patients accept
that almost without exception, as long as you always allow for some hope.
A Physician: What advice do you have for the families of patients
who are dying?
DR. Ross: That is only
difficult if the patient or the family lags behind in the stages. We have
patients who have already separated themselves from their relatives. In
fact, we have a patient now at the hospital who is waiting to die- His
family has stopped visiting him. The nurses are terribly upset because the
wife called up and said that if her husband died, they should not bother
calling during the night. She would call in the morning to check. This
family has already separated itself and yet the husband is still alive
and very lonely. When I went to see him, he expressed a lot of grief and
asked if I would pray that it would soon be over. There is nothing much
that he wants to do. It is more often true that the patient has reached a
stage of acceptance and the family has not. That is the time when the
family begins to run around and beg you for life-prolonging procedures.
We have had one difficult case where a woman was ready to die. She had
accepted it and was only concerned that her husband could not accept it.
The husband was busy arranging for additional surgery, which was
scheduled for the following Monday. The patient could not tolerate the
thought of an additional procedure. She became very anxious and
uncomfortable prior to surgery. She demanded twice as much medication for
pain and finally, in the room outside of the operating room where she was
prepared, she had an acute psychotic episode and became paranoid and
screamed, "They are going to kill me, they are going to kill me." In her
psychotic state she kept saying, "Talk to that man, talk to that man."
When I talked with her husband and tried to explain what had happened, he
said that be would rather have as a last memory his beautiful, dignified,
wonderful wife than know that she was dying a psychotic woman. When he was
able to convey to her that he had accepted and acknowledged the fact that
she was terminally ill and the surgery was permanently cancelled, she soon
became no psychotic- She lived for about one week and she even went home
one more time to help her husband turn the clock back a little bit.
We have
had three instances so far where patients used psychotic defenses against
artificial and extraordinary life-prolonging procedures. We have some very
traumatic cases where husband and wife could not reach the same stage at
the same time. I think a golden rule for us as physicians is to know
enough to stop the extraordinary measures when a patient has reached the
stage of acceptance. When the patient has come that far, then I think many
of us know that such interference is no longer therapeutic, and may only
gratify our own needs.
A Physician: Do you ever tell a patient he is
dying?
Dr. Ross: You never
tell a patient he is dying; never. You don’t have to- you just tell him
that he has a serious illness. You say, “It looks pretty grim”, or “It
looks pretty bad”. Then you wait for and answer his next questions. He may
ask you, “Is it going to be painful?” “Am I going to be alone?” “How long
is this going to last?” You say you don’t know, because the worst thing
that we have experienced is people who tell time, for example people who
figure on six months, which is not correct anyway.
A Physician: Have
many of your patients been physicians, and if so, have they presented
unusual problems?
Dr. Ross: We have
had perhaps six or seven physicians and bout the same number of dentists.
I would say that they may have maintained the denial for a bit longer in
spite or perhaps because of a better understanding of their diagnosis or
of their illness. I think physicians have it much harder. We are trained
to heal, to cure, to prolong life, and I think many of us feel that “if a
patient dies on us, “it is like a defeat or a failure, and so we do not
talk about it. That hope is that in time we will have more
interdisciplinary seminars not only for medical students like we have in
Chicago now s an accredited course, but for sociology students, nursing
students, social work students, and members of the clergy.
A Physician: Have
you noticed whether or not the patient’s religious orientation has
affected his view toward resignation in the end?
Dr. Ross: Not
resignation but acceptance! I have a peculiar patient population, or at
least I tend to think so. I have very few really religious people. The few
I have-and I mean those with a deep intrinsic faith-have it much easier,
but they are extremely few. I have an even smaller number of real atheists
who believe nothing, and they have it rather easy too. About 95% are
somewhere in between. They are struggling at the end very desperately, but
they would like to have the rock of Gibraltar and they only have a straw;
they would like to enlarge that and get more faith, but it is somewhat too
late. Many patients become more religious in the end, but it is not really
effective.
Summary
Psychiatrically it is extremely important to appreciate that, in terms of
the unconscious, we cannot conceive of our own death and that; in
addition, we cannot differentiate between the wish and the deed. Although
people today have the same kind of unconscious thoughts and fantasies
about death that other persons had years ago, our society has changed and
has become increasingly a death-denying society. We live today in the
illusion that, since we have mastered so many things, we shall be able to
master death too.
Certain
generalizations based on interviewing more than 400 dying patients in the
past four years can be stated. All patients know when they are terminally
ill, whether they have been told or not. Patients usually state that they
would like to be told if it is serious, but not without hope.
Most, but not all, patients pass through five stages
(denial, anger, bargaining, depression, and acceptance) between their
awareness of serious illness and their death, when they are faced with a
potentially fatal illness. The knowledgeable physician, particularly one
who is himself comfortable in facing the dying patient, can help these
patients pass through one or all of these stages by appropriate verbal and
nonverbal support-particularly the support engendered by the patient’ s
realization that his physician will stay with him until the end.