to tell or not to tell the cancer patient the truth?

To Tell or Not To Tell the Cancer Patient the Truth?

BOGUSLAW A. MACIEJEWSKI, MARIA MACIEJEWSKA, AND MAGDALENA KRY J

M . Skiodowska-Curie Memorial Institute and Cancer Center Wyb. Armii Krajowej 25 44-101 Gliwice, Poland

There are many physicians by title, . . . veryfew by calling. -HIPPOCRATES

The physician-patient relationship is a significant component of the treatment strategy. Communication constitutes perhaps the most important process in medicine. Among various aspects of the direct relationship between the physician and the patient, conversation with the patient is among the most important. It is the duty of the physician to supply the patient with full explanations. However, cooperation between the physician and the patient is not merely a question of mutual goodwill and readiness. It also depends on certain other factors, the nature of which may be associated with, for instance, knowledge and competence-i.e., the professional training of the physician for his work with patients. It is increasingly evident that medical knowledge must be supplemented by a basic knowledge of psychology, so that the physician may make fuller use of the therapeutic power of words to enlist the patient's psychological reserves.

The physician-cancer patient relationship constitutes a most complex problem, one of the most difficult aspects of which is sincere communication with the patient. Despite the passage of time this matter still is one of the most controversial questions, and coming to the surface time and again, sometimes evoking heated disputes and arguments. Among the main dilemmas is whether the patient should be told the truth. Most American physicians are willing to inform the patient first of all, who, as they assume, has the right to learn the truth and decide whether the family is also to know. Physicians in Europe, including Poland, are more in favor of telling the family first.

Both attitudes arouse many doubts, uncertainties, and moral dilemmas. Should the cancer patient be told the whole truth even when the disease is advanced and there is no chance of cure? Or should the patient be cheated, should the seriousness of the situation be minimized by explanations that there is still hope, that within days the patient's health is going to improve, while telling the whole truth to the family? Is such an attitude an expression of cowardice, mercy, conformity, or pity? Is

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withholding the truth about the state of his or her condition from the patient a lie, a choice of a lesser evil, or an act of graciousness? How can we separate truth and honesty with respect to the patient, who trusts us and listens with hope to our every word, from the immeasurable damage of the harsh verdict of fate? According to what criteria should the physician decide which approach is best for the other human being? Where is the boundary between the truth and the patient’s good? If someone were to ask whether the truth should always be expressed and never held back, when cancer is at stake, it would seem that the answer should be that in medicine words like “always” and “never” do not fit. And though excep- tions may be found, they merely constitute confirmation of this principle.

It is hard to talk about the relationship between the physician and the cancer patient in Poland on merely moral and ethical grounds, without taking into account the political, social, and cultural conditions that have influenced this system for decades. The notion of the summum bonum, the highest good, and primum non nocere have become fundamental guide- lines for Polish physicians, including oncologists. Nowadays and in the past the use of Latin in Polish medical practice (histopathological diagnosis, patient records, prescriptions, and autopsy reports), although it comes from long years of tradition, poses from the beginning a barrier of secrecy before the patient by coding information in an unknown language. Poland has been a predominantly Catholic country, and the conservative church still tries to convince people that it is better to pray and believe than to ask for more information. This, indeed, also has an impact upon the physician-patient relationship, and is the source of uncertainty, appre- hension, fear, and suspicion. It is very seldom that a patient asks a physician to interpret and to explain the Latin expressions.

The first years of the 20th century mark the beginning of Polish oncology. In 1906 the Committee for the Fight Against Cancer was established, and over the following years polyclinics for outpatients with cancer were opened. Maria Sklodowska-Curie established the Foundation for the Radium Institute in Warsaw, which began operation in 1932. Also, Maria Sklodowska-Curie donated the first gram of radium for treating cancer patients. The Radium Institute was the first comprehensive cancer center in Poland, where the fundamentals of modern oncology, based on close cooperation between pathologist, surgeon, radiotherapist, and medical oncologist were practiced.

After World War 11, the Institutes of Oncology in Gliwice (1947) and Cracow (1951) were established. In 1951 all three Institutes were com- bined to form the single M. Sklodowska-Curie Memorial Institute and Cancer Center. Over the next years a network of polyclinics and onco- logical centers developed in numerous Polish cities. All of them adopted the professional and organizational concept of comprehensive cancer treatment as the basis for their operation. During the midseventies a Comprehensive Governmental Program was drafted concerning the Fight

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Against Cancer. This centralized approach toward organizing the professional components of the cancer treatmentent program contributed to the unified education and training of radiation and medical oncologists and comprehensive therapy for cancer patients all over the county.

During the post-War period, with the entrance of Communism into the political stage in Poland, the good of the individual was replaced by the good of the general society, and the slogan “each one receives relative to his needs,” introduced by Communism, became empty words, not only as far as medical care was concerned. A free health system in general and free oncology services in particular were declared; however, this only apparently made medical assistance easily accessible, pretending to bring it close to the patient.

Centrally managed administation, financing, and organization of health care with generally low-budget expenditures for these purposes led over a period of 40 years to a decay that has been hard to rebuild. . The patient frequently was treated mechanically and, although receiving treatment and medicines free of charge, had practically no possibility of expressing his or her needs in spite of the fact that in theory this was legally guaranteed. Within the Communist system physicians were pro- duced en masse, at first with assigned employment. During the first decades after the War their contact with world medicine was almost nonexistent. Low wages, generally low even today, and difficult living conditions for both physicians and patients had their negative impact on the relationship between the two. A Physician’s Ethical Code did, in fact, exist, but it was far from perfect; and significant gaps in the legal regulations seriously compromised the modest possibilities of patients’ rights being respected. Physicians and lawyers, similarly to the other members of the intelligentsia, were pushed by the political system to the lowest lev- els of the social hierarchy, although the society continued to praise them very highly. This may to a large extent be ascribed to the authority, knowledge, and ethical standing of the old professors who lived though the War and tried to pass on the highest moral and humanistic values to the next generations of physicians. In view of such serious restrictions, it is surprising that the high educational level of physicians was main- tained, so that their practical professional ability and knowledge did not differ from those of their colleagues from Western Europe, as it turned out when the frequency of contacts between them increased. In such a social situation and with health care generally available, although of low qual- ity, ethnic, cultural, and social differences generally vanished, and their impact on the physician-patient relationship disappeared.

Disease became a shameful matter. Cancer has been, and frequently still is, thought of as a death sentence. But a slow evolution of such opin- ions may be observed over the last few years. Limited access to the physician, in spite of Communist propaganda suggesting the opposite, bad hospital conditions, and shortages of medicines all resulted in a decrease

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in the patient’s trust in the efficacy of the therapy proposed by the doctor. A sociological survey conducted during the eighties1P2 indicated that as many as 42% of those investigated declared that they ”would go to the doctor as the last resort,” 63% used their own or their friends’ experience, and as many as 29% just waited for their symptoms to disappear. One fifth of the persons investigated used the suggestions of homeopaths and chiropractors. A strange exception to this picture was the inhabitants of Warsaw, the capital of Poland, who almost without exception consulted a doctor whenever they noticed any alarming symptoms. It seems that the needs of the patients were better realized in the capital than in the rest of the country. Communist propaganda sought to use the capital to promote a false image of the country by establishing a number of excellently equipped government hospitals, science and research institutes, and aca- demic clinical hospitals. Workers were generally treated as simply a labor force, although they had various privileges granted by the workers’ and farmers’ political system. They learned to think of their bodies as some- thing undergoing wear and tear, not worthy of recovery. Prophylactic and rehabilitation activities were neglected. Environmental pollution got continually worse, although the nation was persuaded that the people lived in safe conditions. A dramatic case of this situation and policy was Silesia, where the progressive ecological degradation was concealed from public opinion.

Research conducted at the turn of the eighties3 indicated that as few as one patient in five evaluated his or her contact with the physician as ”good.” More than half considered the information obtained to be ”insuf- ficient and incomprehensible.” Another sociological survey’ suggests that the most effective psychological influence on the patient proved to be the so-called egocentric communication style. This consists in the physicians’ ascribing more autonomy for themselves than for others, thus imposing upon their patients the decision concerning their treatment. Not having much of a choice and worried about possible loss of the available treatment, the patient often would consent to the suggested treatment without futher discussion or full information about it.

The physician-patient relationship has been evolving over the few years since Poland has become a democratic country. This is ensured by the revised physicians’ Code of Ethics: as well as by the mandatory principle of informed consent. The empty slogans of ”social care” and ”Communist health services,” inherited from the 40 years of Communism are slowly being filled with meaning with the prevailing care for the health of the individual, although an obsolete and unreformable social insurance system is causing delay in this field.

Although the Chamber of Physicians was recently reconstituted and malpractice regulations are in force, the health policy has not changed very much, and the system is still free. There are still many discrepancies between the declared and real-life accessibility of the health system.


Prices of medicines increase every year. The list of drugs available with full reimbursement is very short; patients generally have to pay 100% or 30% of the cost of drugs. Although hospital treatments for in- and outpatients are declared free, the budget given by the central Ministry of Health is too low to cover all costs, and patients are often asked or even pres- sured to contribute toward the costs. Many hospitals have long waiting lists, and for the last few years the number of patients admitted to hospitals is increasing. For example, at the Institute of Oncology in Gliwice 9,000 patients were treated in 1990, and more than 12,000 patients were treated and 150,000 consultations provided in 1995. The budget of the Institute did not increase during this period. This may look like a mira- cle, but it is not. We have to find private sponsors, foundations, and char- ities to cover the difference between the given budget and actual expenditures. This situation, with its many paradoxes, is making the transition period very difficult. Fundamental changes in the social insurance system are promised by the government every year; however, people do not belive that these will be realized soon.

The political, historical, social, and cultural circumstances of the physician-patient relationship presented have influenced and are still influencing the answer to the question of whether the cancer patient should be told the truth. Some journalists report that patients in the United States are always told the truth and that it would be good to do the same thing in Poland. Our impression from a number of visits to the United States, however, is that this is not always the case, that the principle is not always followed. Also, we doubt whether it would be proper to simply transfer this practice or legal principle onto Polish soil. There is little probability that Americans are different from Poles and do not fear cancer. The scope and justification of the aim of telling the truth may differ-i.e., legal, economic, property matters, etc. may be at stake-but I believe psychological questions are rarely, if ever, considered.

There is a lot of work to be done in Poland before people start to talk openly about cancer and discuss the disease with family, friends, and spe- cialists. For the last few years we have popularized knowledge about cancer more widely and actively by the mass media. There are regular programs on television and radio concerning cancer prevention and prophylaxis, screening for early detection, etc. Besides the financial and organizational problems that have to be solved, there are many psychological and sociological customs that have to be changed, and all these activities need a long time. It can be observed that physicians by themselves carry out more initiatives than the Ministry of Health or politicians in this difficult process of sincere patient-doctor communication.

In Poland as in other countries there are philosophical and ethical aspects of the doctor-cancer patient realtionship that cannot be easily related to doctors’ unwillingness to start time-consuming, open communication with patients. Everyday life again and again demonstrates to us


that the cancer patient who asks about his or her condition and demands the truth, stating that he or she is strong and capable of withstanding any- thing, is in fact expecting the denial, not the confirmation, of his or her apprehensions.

Should we, then, tell the truth concerning the diagnosis? What verbal arguments does the physician have to aid him or her? In oncology many words like "if," "maybe," and "probably" are still used; the patient's cure is simply expressed in probabilistic terms. What is the physician's posi- tion with respect to the patient, if the physician may offer only a chance, while homeopaths and chiropractors would freely promise to cure the patient? In what way should the physician behave toward a terminal cancer patient, and how should he or she prepare the sick person for death? Even when given the opportunity of learning about one's approaching death, a human being generally tries to avoid awareness of its inevitable coming. Is the physician to break this natural defense mechanism by telling the truth and depriving the patient of his or her last hopes? Who needs patients to be aware of the existence of their illness? Qui bono?

The patient may die within a few months, but there are vastly different ways of living through this last period: depressed and in black despair, expecting day after day the final stroke; or living in a rather quiet mood until the end. Seneca has said "it is not death that we fear, but the thought of it." Oftentimes the escape from the consciousness of death is a result of anxiety about the physical suffering associated with it. Many persons seek comfort and relief in religious help, others prefer a psychol- ogist to a priest. Yet, the dominant role in ensuring the patient's proper physical and psychological condition is that of the physician. Everyone feels safer and more certain knowing that he or she has someone who will help until the very end. We have had over 10,000 patients in our onto- logical practice, and only a few of them quietly and rationally prepared for death. I have witnessed very many psychological breakdowns and have had a number of suicidal cases. And at the opposite end, there is a group of cancer patients who were permanently cured. They passed through the hell of doubt and despair, and only a few took up a conscious fight. We have many doubts, and we are not certain what the truth is in the end. The question of telling the patient the truth is becoming more and more frequently and commonly a subject for discussion, and physicians have many times been accused of usurping for themselves the right not to explain to patients where the truth is.

The regulations of the Polish Physicians' Professional Code of Ethics" formulate the principles of the physician-patient relationship by stipulat- ing that the physician should impart to the patient understandable information concerning his or her condition, diagnosis, diagnostic and therapeutic procedures employed, alternative methods, side effects, and the consequences of neglecting treatment. The stipulation is formulated as a suggestion rather than an obligation. The truth, seemingly so


expected, only rarely brings about peace. Therefore, although lies are ignoble according to any ethical system, an “optimistic lie” or rather a “misstatement” employed for the benefit of the patient may not be considered to be so.

Such a tentative opinion concerning the physician-patient relationship, perhaps thought of by some as waiving responsibility, has been influenced by the many years of neglect of prophylaxis and promotion of cancer knowledge in Poland. The intense activities of the medical profession and of social circles in Poland in this field in recent years cannot fill the gap. Doubtless, the popular knowledge of the cancer diseases among Americans is incomparably greater than that in Poland. Thus, the plane of the physician-patient relationship is different, too.

Yet, irrespective of continent, country, circumstances, or economic conditions, the question of telling the truth to the cancer patient should also be taken account of from the point of view of the present situation in the cancer research, which is decisively different from the advancements in, say, nuclear physics or space research. In the latter two cases the knowledge available is sufficient for the achievement of the solutions sought-e.g., space flights. What is now known about cancer cannot, however, constitute a basis for the establishment of a program that would offer a solution to the problems of the prevention and treatment of this disease. Although research is being earned out and progress is notable in, for instance, tumor biology, exceeding the practical feasibility of employ- ing this knowledge, at the present stage of development the prospect of success as far as time is concerned is hard to determine. The complex nature of this disease constitutes an extremely difficult obstacle. Cancer is not a single disease, but it is found in many diverse forms, the nature of which are not yet precisely known. This, particularly, makes any plan- ning complex. Thus, one cannot foresee to what degree progress achieved with respect to one type of cancer can be helpful in fighting another. Only full control of this disease would, in my view, give the physician the right to tell the patient the full truth about it.

We still have a long way to go in fighting prejudices, preconceptions, uncertainties, and stereotyped convictions. Thus, no single answer exists to the question about the form the physician-patient relationship should take, nor is there a simple answer to the question of whether or not to tell the cancer patient the truth. There are no racial or religious prejudices among physicians in our country. We do not consider the patient on the basis of what he or she represents or where he or she comes from. Whether he or she is a VIP or a simple farmer, the patient’s condition is decisive for the physician’s actions. The problems of telling the truth or withholding it and of legal responsibility depend on the patient’s good and still have to be solved by the physician in his or her own conscience.


REFERENCES

1. KIELANOWSKI, T. 1980. Ethics and Medical Deontology. PZWL. Warsaw. 2. S~KOLOWSKA, M. 1986. Sociology in Medicine. PZWL. Warsaw. 3. WIREFIELD, N. R. & M. Y. PEAY. 1980. Behavioural Science in Medicine. G.

Allen & Unwin. London. Copyright for the Polish Edition by PZWL, Warsaw,1986.

4. KHOURY, S. & C. JASMIN, Eds. 1979. Cancer, Dr Grands specialistes respon- dent. Hachette. Paris. Copyright for the Polish Edition by PZWL, Warsaw, 1983.

5. 1992. Medical Profession Law. Journal of Law No. 25, chaps. 2-5.

to tell or not to tell the cancer patient the truth?

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