Discussion with those who are seriously
ill and dying
During the final crisis in the
life of a person, when disease has brought him to the point of no-return
and it is no longer possible to stave off death, the patient has the greatest
need of conversation with his doctor. Unfortunately it is precisely this
stage which is characterized by pseudo-contact, deception, lies or speechlessness.
There is a deep rift between the desire of the patient for communication,
and the communication which is allowed by the world around him. It is not
only the lack of discussion, but also the cessation of discussion and isolation
which often characterize the situation of the seriously ill and dying patients.
|Man can live between
|hope, but not without
The majority of terminally
ill and dying patients are cared for in hospitals. This trend is increasing:
in Germany in 1968, 44 % of those who died, died in hospital and this percentage
increased to 59% in 1978 and up to 65 % in 1984. Thanks to a longer life
span, family members are less and less confronted with death and serious
illness at home. Technically, hospitals are better equipped for the care
of terminally ill patients and those who are dying. However because this
"task is in contradiction to the self-image of this institution which is
oriented towards healing, restitution and recovery," some of the greatest
problems arise during terminal care in hospitals (U. Koch, Ch. Schmeling).
Confrontation with death
and dying is largely prevented by the daily routine of the hospital. Very
many rules and regulations create such barriers: relatives may only visit
during visiting hours, and not when the patient requires them urgently.
The life on the ward is filled with waking, mealtimes, investigations and
therapeutic measures. The patient receives "lots of advice, but few explanations".
He must spend the last few days of his life with strangers (other patients,
doctors, nursing staff).
Ch. Reimer showed by his
study of hospital doctors that one third of those asked treated cancer
patients "less willingly" than other patients. Only two-thirds of the doctors
spoke with their terminally ill and dying patients
(conversation time from 5 to 20 minutes), but the initiative usually came
from the patient himself. The choice of subject was also investigated;
the most frequent topic of conversation was that of the therapeutic aspects,
seldom the prognosis, and never death itself. Nevertheless all of the doctors
considered that their approach was all in all positive. However when the
patients were questioned concurrently, they stated that the doctors showed
an insufficient willingness to talk. Clear answers and openness
were missing in most cases ("we will use radiation therapy now, and then
it will be better ..."). There were also complaints that the doctors made
little time available to their patients. The most important finding
was that the patients felt left alone. One patient said: "There
are doctors, nurses and priests here, but I have not yet met a real person".
Of course doctors are well aware of the "helplessness of the helper"; "the
doctors tended to lie, to try to extend dying, to give hope in spite of
their better judgement". (F. Rest).
In his contact with terminally ill
and dying patients, the doctor tends to withhold important information
from the patient, but on the other hand, to overload the relatives
with information, especially with regard to the likely time of death. The
premature anticipation and release of grief on the part of the relatives
is accompanied by the danger that the patient is written off prematurely.
Everything apart from death is discussed with the patient. Everything that
is done carries the seed of increasing isolation and loneliness for the
terminally ill patient. "Loneliness, accentuated by the impersonal treatment,
sets in as soon as the patient is taken out of his usual environment and
rushed into hospital. Whoever had anticipated peace and support in such
a situation, never forgets how he was packed onto a stretcher and transported
to hospital with wailing sirens and flashing lights. The transportation
is itself the start of a long episode of suffering. Even somebody who is
healthy finds it difficult to stomach the noise, the light, the pumps,
the many voices which assail him in the emergency room. In the emergency
department of the hospital, sisters, technicians, and doctors immediately
become involved. Perhaps a laboratory technician appears to take blood,
or a specialist in taking ECG's; possibly he is packed onto the x-ray table.
In all situations, he catches a word here and there about his condition,
or relevant questions to the members of his family. Very slowly and insidiously
he finds that he is being treated as an object, that he has ceased to be
a person. Decisions are often taken against his will, and when he tries
to protest, he receives sedation ... He would prefer peace, freedom and
respect but finds himself with an infusion, even a blood transfusion, on
a heart-lung machine, with an imminent tracheotomy; whatever is medically
necessary. Perhaps he is yearning only for a single person to stand still
long enough for him to ask a single question, but now a dozen of people
run around him night and day, taking care of his heart and pulse rate,
his electrocardiogram and lung functions, his secretions and excretions
- only not for him as a person ..." (Elisabeth Kübler-Ross).
Why is it that discussions and dealing
with terminally ill and dying patients are so difficult to manage? Why
do doctors shy at this duty, and regard it as something for the "professionals"
such as psychiatrists, psychologists or oncologists?
There are both obvious and more hidden
grounds for this. Obvious reasons are that of lack of the necessary time,
the lack of training for this responsibility and the difficulty of the
matter itself. In fact other reasons often play a role: death has
always been regarded with dread and shock, but there has as yet been no
era in which death and dying have become such a taboo as in our own day
and age, characterized as it is by a flight from the reality of death.
In an era in which technical possibilities are almost limitless, recognition
of the fact that there is one thing that is "impossible" in the
life of a person (that is surviving death itself) releases a particularly
unbearable feeling of impotence. On the other hand, it is precisely this
nearly boundless strength in technical matters which has resulted in "dying
being more cruel than previously, so alone, so mechanized, and impersonal,
that one is no longer able to say at which moment death happened" (E. Kübler-Ross).
Elisabeth Kübler-Ross gives the
reasons at the same time: "Does the reason for this increasingly mechanized,
impersonal treatment lie within ourselves, in our own defense mechanisms?
Could it be that this is the only way in which we can deal with our own
anxieties, which arise when we are confronted with a seriously ill or terminal
patient? ... After all, equipment affects us far less than the suffering
face of a human being, which reminds us once again of our impotency, of
our limitations, our failures, our own mortality".
The majority of doctors find it very
difficult to establish a firm bond, characterized by openness and trust,
with their terminally ill patients. Our difficulties in dealing spontaneously
with terminally ill and dying patients
in the right way are made obvious by the fact that a systematic study of
dying had to be made in order to develop a clinically validated bed-side
approach at death. Presence at the point of death is not however something
for consultants, oncologists or specially trained psychotherapists, but
a responsibility of general practitioners and doctors working in hospitals.
|/ would like to die holding
To accompany terminally-ill
and dying patients involves working in boundary territory, but not in a
forgotten outpost or no-man's-land. It has the following objectives (E.
Kübler-Ross, U. Koch, S. Schmeling, R. Adler, W. Hemmeler, E. Aulbert):
|The last moments of our
|confirm that which has
|characterized our whole
|that people need people,
|even though they can
|archenemies and best
of a dependable working-relationship
unjustified "negative feelings"
||Do not break
down defense mechanisms
||Involve the family
The loneliness in
which the patient finds himself is deadly in the real sense of the word:
he is isolated by deception and by lies, helpers avoid him, relatives are
beside themselves with worry or cannot cope, and the patient himself feels
impotent and paralyzed in the face of the incomprehensible events. There
is no response to his questions, he seems to be surrounded by strangers,
and although much is done to him, nothing is done on his behalf. Relatives,
visitors, doctors and nurses spend as little
time with him as possible. His own inability to express what is incomprehensible
builds up further walls around him. Finally he finds himself in the most
terrifying of all situations: death is approaching and he is abandoned.
Occasionally "social death" precedes physical death.
A pathologist (S. Sanes) developed
a malignant lymphoma shortly after his retirement, and published his thoughts
and experiences over the 5 years up to shortly before his death, in a book
entitled "A physician faces cancer in himself" (1979). He had to conclude
that most of the doctors who treated him lacked the ability to feel for
him. Summing up his experience enabled him to give practical hints for
the care of a patient with cancer: "Develop a personal relationship with
the patient and his family, be available and punctual, take time, introduce
yourself if you do not yet know the patient, arrange the place and time
of discussions in order that unnecessary interruptions can be avoided,
use simple terms and avoid medical terminology; observe yourself very carefully
so that you do not reveal (by your expression, tone of voice or gestures)
your own anxieties, presumptions and concerns, raised by the diagnosis.
If the diagnosis is cancer, use the word, but explain this particular sort
of cancer to the patient using a pencil and paper if necessary; be prepared
to answer questions from the patient and family; give the patient and family
one's own telephone number and tell them whom to call should you be unavailable;
do not get annoyed when the patient or relatives ask apparently illogical
questions or ask about treatment that they have heard of elsewhere."
The working relationship is
the "unwritten contract" between the doctor and the patient. The most important
"clauses" of this contract involve reassurance of the patient that he will
never be alone in any of the stages of his illness. Building up such a
contract completely depends on trustful and sympathetic discussions, which,
by the sensation of warmth and understanding, assure the patient that his
feelings have been understood and accepted.
It is impossible to truly care for
a dying patient without giving him hope, for although one can live
between dread and hope, one cannot live with "hopelessness alone". This
also applies to all stages of the illness. Elisabeth Kübler-Ross confirms
that "hope is present in nearly all stages of illness ... When we listen
to our terminally ill patients, it continually moves us that even those
who are resigned themselves to their fate, and have a realistic approach
to their disease, still continue to play with the idea of a special cure,
or believe that a new drug will be discovered, or believe in the "success
of a research project at the last minute". This hope helps the dying patient
to maintain his mental faculties and to continue to undergo investigations.
It promises, as it were, a justification of suffering ... We found out
that all patients cultivated hope, and were supported by it during particularly
It should be clearly understood that
does not mean that unrealistic hope should be aroused at any price.
This could not be supported either in the short- or long-term. What it
means it that the doctor should never exclude a "happy ending". Hopefulness
does not mean only hope for healing or cure in the case of the terminally
ill and dying. Hope takes on a completely different dimension to that of
the healthy. But the seed is always there and must be maintained. This
hopefulness can often be for completely obvious things; hoping for a few
pain-free hours or days, some peace and quiet, silent care, or as the last
hope that it "will soon be all over" or that somebody will grieve for them.
U. Hillebrand described a cancer patient who made a great effort to ask
a student nurse if she would cry for him when he died.
A completely different perspective
of hope is revealed for those patients who are believing Christians. This
is the hope in a fundamentally New Life, the different and truly "New World"
that is presented in Revelations with a few but overpowering words: "Behold!
I am making all things new!" (Revelations 21 v. 5).
Anxieties fill the life of the
terminally-ill and dying patient. One of the most important duties of the
doctor is not only to avoid magnifying anxiety but also to reduce it if
at all possible. This involves not increasing anxieties by inappropriate
or imprecise words, excessive investigations, using camouflage tactics
or preventing human contact, as well as recognizing the defense mechanism
of anxiety (see chapter on anxiety and its defense mechanism ).
It is extremely important for the care
of dying patients that relatives are involved and are by their side.
A basic premise is that explanations and information given to the patient
should not be greatly different to that passed on to relatives. They experience
phases of grief similar to those of the patient himself, although they
may be delayed (see next section). Relatives also need the doctor's assistance.
This helps them to understand better certain attitudes and behaviour of
the patient, which would otherwise be incomprehensible. For example, withdrawal
by the patient is a typical behaviour pattern in the disease process and
does not mean rejection. Visiting times and watches at the bed-side of
a dying relative have to be organised
with understanding. Care for the relatives stems from the recognition that
they are also suffering to a great extent, and therefore can also considered
to be "patients" (Möhring, von Vietieghoff-Schell).
In such cases, the relatives
should be followed up even after the death. It is often sufficient to have
some short contact in the following weeks, in order to provide help during
the most difficult stages of grief. Many relatives are very frightened
when they experience vivid dreams or believe that they have heard the voice,
or seen the deceased. Much distress can be alleviated if relatives are
told that these not unusual phenomena are part of the grieving process.
The road to death
The aim of discussions with
terminally-ill and dying patients is to make the last difficult stages
in life as bearable as possible, ideally to level the path in "readiness
to die". These discussions are considered the most difficult a doctor has
to deal with: every death is a unique event, in which routine has no place.
Because the clock cannot be turned back, there is only one chance to accompany
this dying patient with discussion. The doctor finds himself on highly
sensitive psychological terrain. There is nowhere else where success or
failure depend to such extent on the care with which words are chosen,
and the greatest amount possible of feeling and basic knowledge about the
psychological types of reactions of dying patients need to be understood.
|We can't look at the
sun for long, and we
|can't always look death
in the eye.
The bases for deeper understanding
of the soul searching in terminally-ill and dying patients were revealed
by Elisabeth Kübler-Ross during her research into death and dying.
Only after talking to hundreds of dying patients was she able to conclude
that people pass through certain stages in this final period of life. If
these are recognized, it is easier to understand their journey and their
behaviour. Understanding the patients also makes it easier to offer help
in discussion. All of these steps are those involved in grieving;
their distribution with time is the grieving process. None of these phases
of dying as described by Kübler-Ross should
be considered as invariable. She herself admits that the patients certainly
do not always pass through all phases. She underlines the fact that various
phases can occur concurrently. It is also important to recognize that the
phases usually do not follow one an other chronologically; the patient
can stay for a long time in one, or can leave a later stage to return to
an earlier one.
The time factor must be taken
into account in grief. It is therefore impossible for the doctor to accelerate
the various phases by, for example, the use of "appropriate arguments".
In this connection, it has to be mentioned
again that the relatives also go through these phases, even though
it may not be simultaneously. The doctor can only look on with the greatest
patience whilst the patient and relatives, each for themselves, attempt
to work out their own grief over the illness. Clinical experience confirms
that certain patients certainly do not go through all phases, or show
the typical behaviour patterns ("The patient does not have to
go through certain phases of dying." - F. Rest).
1. Phase - Denial and isolation
The initial reaction of a patient who
finds out that he is incurably ill and will die in the foreseeable future,
is "I can't happen to me; that's not possible!". This is the phase of refusal.
It can be experienced as dramatic where the patient is unprepared or is
informed too early. The wish not to accept this acts "as a buffer between
the patient and his distress over the diagnosis." It is only this repression
mechanism that allows him to cope with the initially incomprehensible events.
The defense mechanisms can be
multiple: the patient simply does not believe the diagnosis. He is convinced
that this is the result of a mistake (the X-ray, blood sample, biopsy specimen
were confused with that of someone else, the doctor who made the diagnosis
was incompetent), or even if the diagnosis was correct, it in no way implies
a fatal outcome.
During this phase, the patient tends
to consult several doctors, to seek advice from the most varied sources,
and to set his hopes on alternative methods. Denial of reality can go so
far as "unrealistic" behaviour (for those who do not know the psychodynamics)
with inevitably unattainable goals: new business plans, long journeys abroad,
building a new house.
Discussions should only take place
in this phase when the patient is ready for it, and not when the doctor
sees it to be necessary. Even then the
doctor must be always prepared to break off the conversation when the patient
signals that he can't manage to talk about the topic anymore. The doctor
must also be aware when the patient would like to refuse the truth, because
he has found that he cannot otherwise manage.
The patient should not
be confronted with the inconsistency of his behaviour and thoughts during
this phase of denial, in order that protective mechanisms are not exhausted.
It is also not the job of the doctor to encourage this type of defense
reaction although it would make it easier for the doctor and his assistants
to put off the difficult time when the patient has to finally come to terms
with the fatal diagnosis.
The behaviour of the patient
also depends on his discussion partner. It appears that patients are especially
likely to reject the truth in cases where their discussion partners have
not worked out for themselves their own relationship to death and dying.
This explains why the patient can be seen to show such various reactions.
The phase of denial and repression usually does not last long. The doctor
should not prolong it by his conduct, as it is a particularly disturbing
Phase 2: Anger
This stage is characterized
by the words "Why does it have to be me?" The angry stage is a very difficult
one. This is because the patient's anger lashes out in all directions and
can affect anybody or everybody. It is understandable; everywhere he looks,
he sees reasons for being angry. Kübler-Ross explains: "He sees young
people dancing wildly on television, whilst he has to lie in bed and can
hardly move. He sees Western films, in which men are killed in cold blood
in front of those who are peacefully drinking their beer; and it immediately
occurs to him, that his relatives and the nursing staff are treating him
heartlessly. The news reports catastrophes, wars and destruction, and everything
is so far away - but here his tragedy is forgotten. He won't allow himself
to be forgotten so quickly; he will take steps to see that doesn't happen!".
This anger can be directed
against doctors, nurses and relatives, against the food, the treatment,
the hospital, other patients, the National Health Service etc. It is very
important to realize that the direction of the anger is random,
and the doctor need not feel personally involved, in order not to react
and destroy his relationship with the patient.
Phase 3: Bargaining
This is usually only a fleeting
stage, hardly noticeable, but which can be very helpful for the patient.
After he has recognized that he is seriously ill, and that anger will not
alter the situation, he starts to bargain in a fashion similar to children,
who in spite of all parental refusals, still want to have their own wishes
fulfilled. They begin to make offers and to bargain: "If I do my homework
every afternoon, may I then...?"
The desires of the patient
in this phase of bargaining are not those of healing or cure, as somewhere
along the line he has understood that this is not available. What he would
like is a somewhat longer lifespan, perhaps also a few days without pain
or difficulties when he can be left in peace. Kübler-Ross, "This bargaining
usually takes place with God, and is kept strictly secret, at the most
being mentioned in discussions with the priest or minister. We have discovered
whilst talking privately to these patients, that many are willing to pay
the price for an increased lifespan by "serving the Lord". As guilt and
broken promises can underlie such offers, such comments should not be ignored.
Cooperation with the priest or minister can be especially helpful at this
Phase 4: Depression
This stage is characterized
by a feeling of "dreadful loss". It is a stage in which the loss of anything
which is important upsets him; physical integrity, possessions, freedom
of movement, nearness and love of others. There is an inevitable loss in
sight (and this is the hardest for most people), that of his own life.
There are two forms
of depression in the fourth stage:
depression to the loss of money, occupation, physical integrity or
status. This is often a real concrete problem, which (at, least to the
patient) seems to be all important. He would like, if possible, to arrange
everything before he dies. This reaction can also be seen in children dying
about the age of 5 or 6, as they consider who should receive their bicycle,
dolls or train-set. It is very important to resolve these practical problems
with the relatives or social worker. It has been shown that the resolution
of these problems relieves a great deal of stress for the sick patient.
depression is the second form of depression. The nature of it is completely
different to that of reactive depression, and requires a different
reaction on the part of doctors, relatives and others. The preparatory
character of this depression is that it shows the way "in which the patient
can come to terms with the loss of all that is loved, in order to alleviate
the final conclusion of his life story. Contrary to reactive depression,
suggestions and encouragement are irrelevant. The process brings the patient
to think about his demise, prepare him for death, and then finally to reach
the last phase, that is to achieve acceptance. Kübler-Ross explains
it very simply: "He himself must be allowed to grieve".
Contrary to reactive depression,
during which the patient wants to talk a lot, and organize things, the
preparatory depression is very quiet. It is usually unnecessary for the
doctor to speak during this depression as "the preparatory pain" needs
hardly any words. What is very important is that the doctor gives signs
by gestures or more frequent brief visits, that he, the doctor, knows in
which stage the patient finds himself, and what is affecting and moving
Phase 5: Acceptance
When the patient has been
through upset, rebellion, anger, private bargaining and depression, he
can approach his death with more or less "peaceful expectation". The stage
of acceptance is not to be confused with resignation or giving up and hopelessness.
It should also not be misunderstood as a glorious or "wonderful condition".
Its essence seems to be that the patient is now "almost free of feeling".
His circle of interests gets smaller and smaller, he would like to be left
in peace as much as possible. He does not welcome visitors, and news and
problems from the outside world affect him less and less.
Communication in this stage
should be increasingly that of gestures rather than of words. Here lies
the large area of understanding and assenting silence in the relationship
between the doctor and patient. The patient should know that he does not
need to speak, that all important affairs have been finalized, that here
now there is nothing more that needs words. Visits are best carried out
in the early evening, when the hospital ward is quieter after the business
of the daily routine, and the doctor can count on a certain amount of undisturbed
time which he can spend with the dying patient. It is important to bear
in mind that the family usually needs more help, support and understanding
in this stage than the patient himself. One of my patients said in this
phase "Everybody is crying but me".
Geisler: Doctor and patient - a partnership through dialogue
Pharma Verlag Frankfurt/Germany, 1991
of this page: http://www.linus-geisler.de/dp/dp29_dying.html