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 too 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).

top

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.

top

 

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 difficult periods".

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.

top

 

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 (refusal)

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 period.

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 stage."

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:

a)	Reactive 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.
b)	Preparatory 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 him.

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". 

top previous page next page