in reaching a stage of temporary bargaining
followed by depression, which is a stepping-stone
towards final acceptance. The following diagram demonstrates how these stages do not replace
each other but can exist next to each other and overlap at times. The final acceptance has been
reached by many patients without any external help, others needed assistance in working through
these different stages in order to die in peace and dignity.
No matter the stage of illness or coping mechanisms used, all our patients maintained some form of
hope until the last moment. Those patients who were told of their fatal diagnosis without a chance,
without a sense of hope, reacted the worst and never quite reconciled
themselves with the person
who presented the news to them in this cruel manner. As far as our patients are concerned, all of
them maintained some hope and it is well for us to remember this! It may come in form of a new
discovery, a new finding in a research laboratory, a new drug or serum, it may come as a miracle
from God or by the discovery that the X-ray or pathological slide really belongs to another patient.
It may come in form of a naturally occurring remission, as Mr. J. so eloquently describes (in
Chapter IX), but it is this hope that should always be maintained whether we can agree with the
form or not.
Though our patients greatly appreciated sharing their concerns with us and talked freely about
death
and dying, they, too, gave their signals when to change the topic, when to turn to more
cheerful things again. They all acknowledged that it was good to ventilate their feelings; they also
had the need to choose the time and the duration for this.
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 social relationships
but few meaningful
interpersonal relationships which would have been available at the end of life. This has been
described in more detailed an example in Chapter IV on the stage of anger.
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 decathex is, 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 patient
responds to an intrinsic signal system which tells him of his impending death. We are able to pick
up these cues without really knowing what psychophysiological signals the patient perceives. When
the patient is asked, he is able to acknowledge his awareness and often communicates it to us by
asking us to sit down now, since he knows that tomorrow will be too late. We should be keenly
aware of such insistence on the part of our patients, as we may miss a unique chance to listen to
them while there is still time.
Our interdisciplinary seminar on the study of terminally ill patients,
has become an accepted and
well-known teaching approach, attended weekly by up to fifty people of different backgrounds,
disciplines, and motivations. It is perhaps one of the few classes where hospital personnel meet
informally and discuss the total patient need and care from different angles. In spite of
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the increasing number of attending students, the seminar often resembles a group therapy session,
in which the participants speak freely about their own reactions and fantasies in relation to the
patient and thus learn something about their own motivations and behavior.
Medical and theology students get academic credit for this course and have written meaningful
papers about this topic. In short, it has become a part of the curriculum of
many students who
encounter the terminally ill patients early in their careers in order to be ready to care for them less
defensively when the responsibility is theirs. Older general practitioners and specialists have visited
the seminar and contributed through their practical experience outside of a hospital set-up. Nurses,
social workers, administrators, and occupational therapists have added to the interdisciplinary
dialogue, and each discipline has taught the other something about their professional roles and
struggles. There has developed a much greater mutual understanding and appreciation, not only
through the exchange of shared responsibilities but mainly perhaps through our mutual acceptance
of a frank expression of our own reactions, our own fears and fantasies. If
a doctor can admit that
he had gooseflesh while listening to a certain patient, then his nurse can feel more comfortable
sharing her innermost feelings about the situation.
One patient expressed the changed atmosphere perhaps most eloquently. She had called us during a
previous hospitalization expressing her dismay and anger about the loneliness and isolation she
experienced on a given ward. She had an unexpected remission and called upon us a second time
when she was re-hospitalized. She had a room on the previous ward and wished to come to the
seminar again in order to share with us her surprise that the atmosphere was a different one
altogether. "Imagine!" she said, "it happens now that a nurse comes into my room and actually
takes
some time and says, 'Feel like talking?'" We have no proof that it is actually the seminar and
the nurses' greater comfort that brought about this change, but we too have noticed the changes on
this specific ward where we have an increasing number of referrals from doctors, nurses, and other
terminally ill patients.
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The greatest change is perhaps the fact that we are asked for consultations by staff for themselves, a
sign of increasing awareness of their own conflicts which may interfere with the best management
of the patient. Lately we have also received requests from terminally ill patients and their family
members outside the hospital set-up to find some tasks for them in the framework of the seminar in
order to give meaning to their own life and to others in similar circumstances.