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Linus Geisler: Doctor and patient - a partnership through dialogue   © Pharma Verlag Frankfurt
... Discussion with those who are seriously ill and dying
The moment of truth
Anxiety and its defense mechanisms
The language
Possibilities and limitations
The opportunity
Questions about the meaning of life
One case history
Human kind cannot bear very much reality.
T.S. Eliot
What is truth?
Pilate (John 18 v. 38)
The moment of truth
The relationship between the doctor and the dying patient also includes the "moment of truth". This is not always identical to the time of explanation. It can happen at any time when the patient, without necessarily expressing it in words, wants to know from his doctor how he is, and the doctor has to reply, again, not necessarily in words. The Mainz Law Institute (1973) asked general practitioners if they explained minor findings to their patients without being asked, and found that 89.4% did this. However explanation of incurable, progressive disease, was only carried out in 11.2%, and in the case of malignant tumors, in only 8.9%. On the other hand, the doctor explained the incurable disease to the spouse in 96.8% of cases. Hinton (1976) showed that about 75% of these patients "know" that they are going to die. This results in an insupportable as well as untruthful situation, which has been so movingly described by Leo Tolstoy in "The death of Ivan Ilyich":

"The major agony for Ivan Ilyich was the lie - which, for whatever reason, was recognized by all; that he was only ill, but would not die, and he must only remain calm, and endure the treatment, in order that everything would be well again. However he knew: we could do what we liked, nothing more would come of it, apart from terrible suffering and death itself. The lie tortured him; it distressed him dreadfully that nobody wanted to admit what they all knew, and what he also knew, and that they wanted to force him to take part in this dishonesty. The lie, this deception practiced on the eve of his death; the lie which was to reduce the awful festival of his death to the level of their visits, and the curtains, and having sturgeon for lunch... this was awful, terrible, for Ivan Ilyich. And odd! Many times whilst they were involving themselves in all this foolishness, he was at a hair's breath of crying out: Stop lying, you know, and I know, that I am dying! But he never had the courage to do it."

The proportion of people who genuinely would like to know that they are incurably ill, can be found only statistically, which means that the question in any individual case would have to be answered anew. A recent study from the Hamburg-Mannheim Foundation for Medical Information found that 59% of a representative sample expected their doctor to inform them fully if they were suffering from an "incurable" or "fatal" disease. 14% of those asked would not want to know the full truth. Men were more willing to accept the full truth than women, as were younger people and those with a higher educational level. The findings of such studies carried out in healthy people can only be extrapolated with extreme caution to those who are already ill. Even when one presumes that these findings are basically applicable, the major conclusion is that only a little more than half of all people would really like to hear the whole truth.

The recurrent question: "Tell the truth - yes or nor" is already incorrectly posed, and cannot be satisfactorily answered in this form, that is with two alternative replies. The person who answers "no" denies that the patient often knows, mostly however supposes, what is happening to him. This supposition (sort of "pre-knowledge") can have many roots: general explanations obtained from the media, death from cancer in his own surroundings, the behaviour of the doctor and nursing staff, or the treatment which has been recommended or already commenced. The tendency to answer "no" to the question about telling the truth usually arises from the personal anxieties of the doctor, and less from the opinion that "...the commandment for truth, in competition with the commandment for love" applies here (Martini). The doctor who says "no" puts the patient who supposes or already knows, exactly into the situation of Ivan Ilyich.

If the question is answered with "yes", then this yes becomes an unabridged affirmation with no "ifs" and "buts", if one excludes the experience of the patient. "This overlooks" (according to Adler and Hemmler), "the confrontation of the patient with the fact that he is sick with cancer, that a process is taking place which has a chronological progress, during which the patient progressively experiences "things" in a different way depending on his own view of reality. There is no "truth" which can be simply doled out. This kind of dealing with the question excludes the patient." These considerations probably increase the urgency of the question of how the doctor should behave at the moment of truth.

Firstly, there will usually be no single "moment" of truth, "as it is probable that the explanation will be a prolonged process, with variation in readiness to talk, which requires patience and much personal involvement" (H.E. Bock).

The initial step is to find out by discussion whether or not this patient in this stage of his illness would even like an explanation. It should be remembered that readiness of the patient to come to terms, perhaps only very generally, with the true nature of his disease can vary from one day to another. The doctor must herefore be prepared to wait for the favourable moment which seems best for the explanatory discussion.

Unless there is an emergency situation (i.e. emergency operation) which makes it necessary, the patient should not be given this explanation at a time which seems right to the doctor, but rather when the optimal readiness and ability to absorb it is to be expected from the patient.

A further objective of the explanatory discussion is to determine, as closely as possible, what the patient has already guessed, what information he already has, and above all, how extensively he really wants to be informed.

The ground-rule is that no patient should be informed about more than he himself wishes to know.
Explanations are best not carried out in the evening, in order that the patient does not have to deal helplessly with the full import of the truth during the night. If the discussion is carried out in the morning, he has the rest of the day in which to ask questions if he needs, and to get further information.

The spectrum of truth is very wide. On the one hand, truth can mean the confirmation of the supposition that one has cancer, even though this is not put into words, and on the other, precision right up to the histological diagnosis. Even if the patient has been fully informed, his illness should be spoken about with great care. The doctor can never be certain if the patient is, at that moment, in a phase of denial and rebellion with flight into unrealistic ideas, that is, in the extraordinary state of concurrently knowing and not knowing, which often appears incomprehensible to the outsider. Devastating consequences can follow an inconsiderate presentation of the "truth" in this sort of situation.

The doctor must always be aware that however carefully he formulates the truth, basically it is tremendous and inconceivable: "I have to die, and nobody can save me." Accompanying the patient through the last difficult stages of this life, being honest, helping him to become prepared for death, all depend on major individual variations in the degree of insight into the nature and significance of fatal disease.

What really matters, is not the doctor's decision to "tell the truth" or to conceal it, but rather his genuineness in his handling of the dying patient. Genuineness means that he does not abandon him, that he determines to what extent the patient wishes to and is able to rationally and emotionally accept his illness, and that he does not allow himself to get involved in the dishonest and poisonous atmosphere of lies, theatre and disappointments. Ideally conversations between doctor and patient should become "a meeting between two people, who speak to each other without fear or reserve".

Explanation should never blow up all the protective mechanisms, dams and walls that one needs especially when confronted with the approaching death. The protective covering of hope, help and care must be maintained under all circumstances.

Explanations given to the family should not be radically different from those given to the patient, that is, it should be kept to about the same level. Only in this way can the family manage to continue a meaningful involvement in the care of the patient. Asymmetry in the level of knowledge between the patient and relatives usually means that the patient has to bear an even heavier load, which increases his isolation and makes it impossible for genuine conversation. Involvement of the relatives in care in the last stage of life of the patient is of major importance. Only when a trusting relationship between the doctor, patient and family has been established, is it possible to mobilize all the sources of psychological support for the dying patient. However even here one has to tread extremely carefully.

Guidelines for explanation in the case of incurable disease 
1. Genuineness is more important than the "complete truth".
2. Wait for right time.
3. Determine the existing knowledge and suppositions.
4. Only give an explanation if the patient desires one.
5. Do not explain more than the patient wishes or can bear to hear.
6. If possible, give the same level of explanation to both patient and relatives.
At this point it is important to reiterate again, that the relatives are usually out of step with the patient as regards the various stages of grieving. Therefore the doctor must be prepared to recognize apparently incomprehensible, paradoxical or aggressive reactions from the relatives. As with the anger arising during the patient's denial phase, such attacks should not be taken personally, but looked upon rather as reactions to the shattering knowledge that the loss of a close relative is inevitably approaching. The more ready the doctor is, not only to answer the often very urgent questions of the relatives, but also to take the initiative to go to them and offer to discuss the situation, the more likely affective mood swings can be kept within limits and a trusting relationship established.
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Anxiety and its defense mechanisms
The study of modern psycho-oncology has shown that anxiety is one of the major psychological phenomena of patients with malignant tumors. It acts rather like a signal function, in that it makes clear the loss of physical and/or spiritual integrity as a threatening or even present event. This anxiety contains all of the previous preconceptions that are associated with the term "cancer": anxiety about abandonment, social isolation, passive surrender, mutilating surgical procedures, loss of autonomy and quality of life, fear of pain, insurability and death. At the core of anxiety about death is anxiety about disintegration, similar to that of "stepping over the cliff". This anxiety of the cancer patient also has the function of mobilizing psychic resources which aim to recreate the integrity of the person (F. Meerwein).

One of the most critical responsibilities of the doctor is to recognize these anxieties and their defense mechanisms, which can be completely concealed. He is more likely to be confronted by the whole scale of defense mechanisms than by the open admission: "I am anxious." These defense mechanisms allow the patient not to face his anxieties helplessly. With them, he can obtain some measure of control of his anxiety, although a certain amount of uncontrolled (free floating anxiety) remains over. The duty of the doctor is to recognize this free-floating anxiety, as well as the defense mechanisms, and to assist the patient in the battle against these concerns by involving him in the treatment plan. The following examples of the most important defense mechanisms against anxiety are provided by F. Meerwein:

Denial: "I have no anxiety, and am ready for anything."
Rationalization: "The illness itself does not make me worried. However I do get concerned about taking the tablets. When I do occasionally become aware of anxiety, it is the fault of the strong medication."
Avoidance: "I really don't want to discuss my illness and I avoid thinking about it; I can cope best in this way."
Identification with the aggressor: "The culmination of everything bad that has been done to me in my life, is expressed in my illness. I therefore now feel angry, and whip up anxiety in others."
Projection: "My wife is very worried about my condition. Please help her, as her anxiety concerns me more than anything else."
Contraphobic defense: "I know that there is a 15% risk of cancer in the other breast after breast cancer is found in one. I suggest that you immediately remove the other breast, so that I can regard myself as completely healed at last."
Phallic defense: "I do not need any help, and can come to terms with my disease by myself. Anyway, I can't depend on anyone else. Nobody is as capable as I myself."
Moving in the opposite direction: "I have never felt as good as I do since I have been ill. My life has become more intense and my feelings more rich."
These examples of verbalization of defense mechanisms clearly show on what dangerous ground the therapist finds himself if he takes statements such as "I have no concerns and am ready for anything" or "I have never felt so well, as since I have been ill" at face value, not taking the psychological background into consideration. This leads to the development of an atmosphere with a false sense of security and freedom from anxiety, which prevents every real approach to the deepest anxieties of the patient. It is here that the doctor's ability for active listening is most important; listening to what is said and hearing the "message behind the message".

As denial is the most common and most effective defense mechanism, this has been studied more than any other. Weismann and Worden (1976/1977, quoted by F. Meerwein) have found, for example, that out of 120 patients who had just been discovered to have cancer and who were all thoroughly informed about the findings and diagnosis, 10% maintained that they did not know the diagnosis 10 days later. Had the phenomenon of denial not been recognized, the behaviour of the patient would appear incomprehensible, and the occasional abrupt leap from a state of "knowing" to "not knowing" would remain unexplained. This phenomenon can even be seen on the same day, for example when a patient says: "I won't be there the next Christmas" and shortly afterwards that he would like to survive at least until his son is awarded his degree, something which could only happen in 4 years at the earliest. This apparent "double book-keeping" is one of the obvious characteristics of denial.

It is very important that the doctor knows that many different forms of defense mechanisms arise, almost without exception, in the case of patients with cancer. These should not be destroyed as they create essential help for coping with an otherwise almost insupportable reality.

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The language
Discussions with dying patients are those with the greatest degree of difficulty. There is no other situation in the relationship between doctor and patient during which words have to be used with a greater care and economy. As is pointed out by the oncologist Th.E. Brewin: "Say enough, but not too much."

A high degree of empathy is required to choose the time, the topic and the extent of the conversation. The doctor has to be able to assess, when and how long the patient in this last phase of life, really wants to talk and about which subjects.

"How" is a more important question to be answered in discussions with the dying and terminally ill patients than "what". The genuineness of the conversation is of utmost importance. There is no place for organized or routine interviews, carried out behind a facade of professionalism.

The principle of complete clarity of speech need only be followed to a limited extent in discussions with these patients. Of course, discussions with the dying should be characterized by openness and should provide an appropriate amount of information. However this information should not be given at the cost of creating hopelessness and horror. For instance, although the term "non-benign tissue" contains almost the same information as "cancer cells", it is probably slightly less shocking, in the same way that "time seems to be limited" is perhaps easier to absorb than "approaching death".

Dying and death are shocking enough, and are associated with major anxieties. It is therefore the responsibility of the doctor not to induce additional anxiety during the course of such discussions. This does not mean that the doctor has to use euphemisms exclusively. However in discussions with those patients, who already have learnt a great deal, it is probably unnecessary to use the term "cancer" again, as the patient understands what the doctor means when he refers to "this illness". The doctor can make it clear to his patient that he and his team will do everything possible to alleviate the anticipated "complaints" as much as possible, without mentioning "pain". Anxiety is created by the use of pathological and anatomical terms, and these can be largely removed from the vocabulary. It is still possible to speak openly with the patient without using the terms "metastases" or "tumor cells". If the patient does want more details, then "involvement" or "changes" in an organ provide as much detail as "liver metastasis" or "bone marrow spread", to say nothing of such detailed descriptions as "disseminated pulmonary tumor" or "obstructed gallduct" which can distress the patient by their implications of post-mortem findings.

Bench - Drawing by a 59-year-old cancer patient four days before his death

Drawing by a 59-year-old cancer patient (highly malignant non-Hodgkin lymphoma) four days before his death. When asked, he interpreted his drawing as follows: "This is a cornfield in bloom with lots of cornflowers, and in the middle of it there is the bench where I would like to rest at last...

It is certainly legitimate to accentuate marginally relevant findings in the course of the disease, as, for example, a temporary freedom from fever, normalization of laboratory values, some weight gain etc. These are the material "upon which hope is based". Even when there is unfavourable news, or deterioration has been found, this should always be given with hope, for example, with the mention of another patient in the same situation, in whom, be it even temporarily, an obvious favourable development or regression of symptoms can be observed.

It is particularly important that the doctor does not project his own impotency and helplessness onto these terminally ill and dying patients in discussions about deterioration or complications. It is especially important that the patient is repeatedly reassured, from the moment of learning that he has incurable disease, that insurability is not synonymous with "nothing more can be done". He should instead know that there are many possibilities of help, and ways of reducing symptoms, which relieve stress and give support, and that "everything possible that people can do" will be available to him for his continuing care. A picture of the future can also be helpful. It is probably more bearable to hear that death is "still miles away" than statistics about life-span. It is reported that Sauerbruch, when he was asked by the dying Hindenburg, how close death was, answered: "Not yet in the room, your Excellency, but he is stalking around the house."

If the patient does not want to talk, either because he is exhausted or unable to speak for any other reason, the doctor should accept this behaviour and "offer a second opportunity": "Would you like me to come back later? ..." or "Would it be better if we carried on talking tomorrow morning?". The patient then knows that his present wish (not to be disturbed) is respected but that his doctor has not deserted him. Even though the patient needs particular help, it is the responsibility of the doctor to see that this very personal experience of dying is not disturbed.

Active listening and understanding silences are of particular importance in this situation. It is often sufficient not to contradict or to answer with silence, as this is answer enough. Often non-verbal communication (in the form of gestures) is better than talking to the dying. The closer the relationship between the doctor and the patient in this last phase of life, the more they will be able to communicate at the level of "wordless agreement".

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Possibilities and limitations
Put in a nutshell, all of the help given by a doctor to terminally ill and dying patients aims to help the patient to find ways of coping with his situation. Even though the knowledge of approaching death can be so incomprehensible and insupportable, the patient has to finally find a way to "emotionally adjust" to his fate. Ideally, it perhaps will be possible for him to "agree" to his death. It is important that the doctor knows which factors encourage this process of acceptance.

The major findings of the help and research programs of R.C. Cary (E. Kübler-Ross) have been that emotional acceptance is most likely to be achieved in those:

in whom physical symptoms are minimal,
who have had close contact with somebody who died peacefully,
who are religiously orientated.

A higher educational level also seems to be associated with an easier emotional acceptance. These findings underline the particular importance of sufficient and continual use of analgesics, especially of continuous rather than intermittent analgesics, in order to avoid recurrent swings between painful and pain-free periods. With this concept of therapy, the total dosage of analgesics is in fact lower than when massive doses of analgesics are given as intervention therapy, which still occurs.

We now know more about the major anxieties of the dying patient. The most common is the concern about being a burden to others, followed by the grief of being parted from those who are close, only then followed by the thought of a painful death. This means that the doctor must make sure that his patient knows that his care is not a burden, but rather a serious duty; that contact with the family must be as close and generous as possible, and finally the patient must be assured that even at the end, he will receive optimal protection against pain.

Care of terminally-ill and dying patients means that the doctor himself will be involved in all details, even when these seem irrelevant to an outsider. This attitude makes it plain to the patient that even the "rest" of his life is taken completely seriously, and that he is not being pushed aside and forgotten.

The freedom of dying patients is severely curtailed. This occasionally insupportable loss of freedom can be somewhat alleviated by removing as many barriers to freedom as possible. In the first instance, this includes avoiding the whole range of incapacitation strategies which can quickly take the upper hand, especially in hospitals. In practice, this means that the patient must be involved in all medical decisions within reasonable limits. He can agree with the introduction of analgesics and sedation, as well as flexibility with regard to the timing, sort and extent of various diagnostic measures, in order to maintain his habits and previous life-style in as far as that is possible, and to decide for himself on the contacts that he makes and the visits he receives.

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They also serve who only stand and wait...
The opportunity
Caring for a patient for whom there is no longer any possibility of healing, calls for a high degree of empathy, emotional involvement, readiness to converse, as well as the ability to impart an understanding presence. However, do all of these efforts have a real effect in view of the inevitable fatal outcome of the disease? Certainly, according to conclusions from research and experience with dying patients.

The dignity of man, even though this is very difficult to define, is always affected by disease, especially during illness preceding death. Although health and healing are the original, basic objectives of medical treatment, they are not the only ones. Where it is not longer possible to heal, and death is approaching, in the "final major crisis of life", when all of the technique-medical intervention per saldo no longer has any effect, it becomes clear just how much a person depends on others. It is precisely this field where the doctor experiences his greatest disappointments, but also his best successes, even if they are not the most spectacular. If he knows what is of concern to the patient and causing his behaviour, the doctor has a good chance to support the insupportable and to make the unpleasant more pleasant. Perhaps he will then experience the "miracle of the small gesture", with empathy, discussion, and careful guidance. William Osler's biographer, Harvey Cushing, described how he would visit his dying patients daily, if not more often. He brought the last rose in his garden on a gloomy November day to a girl who was dying from a fatal tumor, and in this way reconciled her with death.

Under favourable conditions, when enough time is left, and the doctor is really able to support the patient and to guide him, and where it is possible to build up a trusting relationship with the patient and his family, he is able to achieve something like success if the patient achieves "readiness for death", which is acceptance of the disease up to the point of death. Even though it seemed hopeless, if this happens, it can be that one hears from the relatives after the death that "the only one of the whole family who was strong was probably the patient himself."

Elisabeth Kübler-Ross makes it clear that there is another opportunity for the doctor who deals with terminally ill and dying patients, and that is to learn. "The patients soon lose their initial shyness after I start to talk to them, and it is not long before they share with me the incomprehensible loneliness in which they find themselves. Strangers, whom we have never met before, tell us about their concerns, their isolation, and their inability to discuss their disease or death with their next-of-kin or closest relative. They tend to express their anger about the doctors, who do not get down to their level, over the minister, who only too often tries to comfort them with the phrase "It is God's Will", and over their friends and relatives who inevitably try to reassure: "Don't take it so to heart; it isn't as bad as all that". We quickly learnt to identify with them, and we developed an even greater sensibility to their needs and concerns. They taught us a great deal about life and about death, and they were delighted that we asked them to teach us."

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Questions about the meaning of life
The question about the meaning of life as death draws near, is probably the most difficult question that a patient can pose to his doctor. Should one attempt to answer it? Certainly, broadly speaking, one should. Perhaps it is enough to stand by the patient whilst he takes account, without judgement or any attempt to be helpful, and to put in positive input based on one's knowledge of his personal life-story.

Viktor Frankl comments that the question about meaning can also be posed from a completely different standpoint: "Let us think about what we can do when the patient asks what is the point of life. I doubt whether a doctor is in a position to answer. The significance of life varies from person to person, from day to day and from minute to minute. It therefore does not apply so much to the meaning of life in general, but far more to that of one person at one particular time ... As every single situation in daily life requires something of the person, and creates problems which have to be solved, the question about the meaning of life could be put in the opposite way. In the end, the person should not ask what is the meaning of life, but try far more to find out who it is that is asking. In a word: every person is questioned by life; and he can only answer in as far as he accepts responsibility for it."

Experience shows that many patients who know that death is approaching are more likely to ask about the process of dying and what comes after death, than the meaning of life itself. If the patient does however ask about the meaning of life, he can be answered by changing the question and returning it, allowing him to answer the question: "What significance have I had in my life, that is, for other people?" for himself. He will probably then find it out for himself, as answers to this question are found in every life story and biography, and show that there is no earthly existence bereft of meaning.

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One case history
The concluding page of this chapter takes the form of a case report, which is probably better at demonstrating how the doctor, even if he has no more therapy to offer, still does not need to face his dying patient with empty hands. I will admit that the conditions were favourable in this particular case, as the previous relationship was very good.

One of my patients, who had been seeing me occasionally over many years because of mild asthmatic bronchitis, consulted me, at the age of 57, about "tiredness in the last few months, and some weight loss". It was obvious that she was not far from death even as she entered the examination room. Clinical examination suggested extensive intra-abdominal tumor spread, with liver metastases and ascetics. Even during the examination, the patient begged me to be "honest", because there was probably some serious reason for her tiredness. I replied that I could not exclude the possibility of this, and suggested a short period of further investigation in hospital. She was found to have a carcinoma of the sigma colon, which was not stenosed, and extensive liver metastases and ascetics, along with many pulmonary and bone metastases. The findings were discussed together with the patient and the husband, a dentist.

The patient begged me to give me a true answer to the question "Have I got cancer?". I admitted it, but later it was referred to in all conversations only as the "illness" or "disease process". At this initial conversation, we did not discuss the various possibilities of therapy or the likely outcome. I suggested that the couple should make an appointment in the next few days when they were ready to discuss therapy and prognosis. In the meantime, I could be contacted by telephone at any time. Two days later the couple requested an appointment. It seemed as if the phase of rebellion was short, and the only signs of it were that the couple had consulted a homeopathic doctor, as well as asking a surgeon, who was a friend of the family, to talk to me by phone.

During the discussion about possible therapy, I broadly explained that chemotherapy would produce "a certain chance of suppressing the disease process". We also discussed a prophylactic colostomy. The couple asked for more time to think about this.

At the next appointment, the patient asked if the treatment could possibly be delayed by a couple of weeks. If it could, she and her husband would spend a fortnight together by the sea. I agreed, that this would be a good thing, and assured her that I could be reached by phone at any time during her holiday, and would be available to discuss any questions, but especially to help if there were any new symptoms.

The patient did phone be shortly before the end of the holiday, to say that this had been the "best holiday she had for years with her husband", and she had not been upset by poor appetite or tiredness. She wanted to know if she could extend this holiday by another week, to which I agreed.

After the holiday, the patient asked me if in my honest opinion, the treatment was in fact "definitely necessary". It was true that she had some pelvic pain, but this could possibly be controlled at home with the use of pain-killers. In view of the extensive nature of the disease, I agreed to this treatment, and we worked out together a specific plan for treatment with oral analgesics which would provide continuous analgesia.

After a fortnight, the patient returned and said that she was managing very well with the analgesics. I had been visited the previous day by the husband, who admitted that he was terribly upset by his wife's illness, but that he believed that she was best at home, provided she received these continuous pain-killers.

A few days later, she was brought to out-patients, and reported that although the pain was worse, she could "live" with it provided she took analgesics regularly. She also said, with great calmness, which is characteristic of this phase, "everybody is crying apart from me". She died a day later at home, as the result of a fulminating pulmonary embolus.

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Linus Geisler: Doctor and patient - a partnership through dialogue
© Pharma Verlag Frankfurt/Germany, 1991
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