| Abstract |
Cancer is the second main cause of death in the Western world after the cardiovascular diseases. Informing cancer patients is not a simple, self-explanatory process, as is the case with other diseases. Cultural, social and individual differences in opinions and in practices of informing, have been changed recently regarding patients’ rights and the physician-patient relationship. In addition, the involvement of the family indicates the complexity of the issue at hand.
This theme takes on particular importance in Greece due to some characteristics that are at variance with the Western models, which give priority to fully informing patients. Informing a cancer patient is not a one-sided procedure on the part of the physician. It presupposes a mainly psychological interaction between both patient and physician and often includes also third parties such as friends and relatives.
The process of truth telling has two main characteristics:
a) Certainty of diagnosis versus relative uncertainty of prognosis, and
b) short announcement of the physician, who, consciously, or unconsciously avoids the psychological reaction of the patient to his or her disease.
The patient’s response displays the psychological phases of mourning: Denial - anger - bargaining – depression - acceptance. The stages do not have to be sequential, nor does any one patient have to go through all of them.
Consequently, informing the cancer patient lasts as long as the duration of the disease. Also, the stereotype of medical conduct and the expectation of particular reactions from the patient is an oversimplified generalization that does not hold good in practice. At the same time, there are many questions not only as to “if” the patient should be informed, but as to “what” should the information include.
Over the past 30 years there has been a marked change, particularly in Western societies, in the practice of informing cancer patients. Before 1960, most American physicians (over 90%) preferred not to inform their patients of their diagnosis. Still today, in some societies (mainly in Eastern Europe and in Asia, Greece included), the practice of concealing the truth, continues to be accepted and is adopted both by physicians and relatives. In recent years, however, these countries too have moved towards the practice of informing the patient.
An initial attempt to explain the reasons for this shift, was based on the general change in social structures, with the emphasis being on individuality and respect for a person’s autonomy as a main parameter in all issues. Other factors include a series of socio-economic changes, which are connected not only with strong urbanization, the “consumer movement” in the health sector and the change in family structure, but also with the penalization of the medical profession. A more convincing explanation might lie however in a more positive appraisal of the consequences of informing the patient, in connection with scientific progress in cancer treatment.
The effect of culture would appear to play a determining role in the different opinions, preferences and practices as regards informing the cancer patient. A large number of studies have brought such differences to light.
As far as medical staff is concerned, there are great differences in the practices of informing patients, with extreme percentages in America and Japan. In America, 90% of physicians directly inform the cancer patient of his or her diagnosis whereas in Japan hiding the truth is the norm. It would appear that in the physician’s decisions regarding telling the truth to the patient, a major role is played by the psychological stability and social role of the patient, his or her age and the effect of the illness on other people. The consent of the family would also appear to play an important part. The opinions of the nursing staff for the matter are alike.
As regards relatives, it appears from the studies, that they want to be informed in the place of the patient and often ask the physician not to inform the patient. The majority of patients in the Western world would prefer to be given as much basic information as possible about their disease. Nevertheless, only a small proportion would like full, in-depth information about the prognosis of the disease.
From such studies, it can be concluded that on the one hand patients are an exceedingly heterogeneous group, as regards their needs for information and on the other, that a vast minority of patients do not want to be informed in detail. Only very few studies examine the effects of the two methods, informing or not informing, on the psychological and physical health of cancer patients and not one study documents the greater importance of the patient “not knowing” as compared to his knowing about his disease. According to some of the studies it appears that informing cancer patients does not have a negative impact, to the contrary, very often it improves their
quality of life and psychological state while at the same time facilitating the development of a better relationship with relatives and medical staff.
The differences in practices of informing from culture to culture reflect vastly different cultural, social, economic, and religious characteristics that are peculiar to each individual society. Research has brought to light some elements fundamental to the creation of the character of each culture, such as self-determination, the role of social stigma of the disease, type and role of the family, upbringing of children, hierarchical roles of the patients in social groups, beliefs and superstitions, the concept of the lie, what constitutes the correct behaviour for the physician, the political system of each country, socio-economic conditions, the way of dealing with old age and death and religious beliefs.
Analysis of the aforementioned factors shows that although the basic principles of beneficence, justice and even autonomy exist in all cultures, they take on a different meaning or, rather, they are viewed from a different point of view. Consequently, the issue of cultural relativity is central to the handling of bioethical issues and in particular, to issues related to informing patients, which is what we are interested in here.
The physician-patient relationship is the most important factor affecting the informing of patients. In the traditionally structured model of medical practice, the physician-patient relationship is unquestionably asymmetrical due to the fact that the patient is in a very vulnerable position. Thus, one could say that the “power” of the physician, which prevails in many cultures, is expected, or even natural. In reality, however, this “asymmetry” does not mean that in this relationship the patient cannot be socially equal to the physician. Promoting the “good” of the patient presupposes a purely collaborative process between the two parties. The fact that the physician is familiar with the characteristics of the disease does not mean that he also knows what is best for the patient, whereas the patient’s knowledge of his or her own personality, values, preferences and deepest fears is very valuable for therapy.
As regards the active role of the family, both in informing the patient and concerning matters related to his or her therapy, in many societies another kind of relationship is created which also includes the relatives. The physician-family-patient triangle presupposes the informing of relatives, but also the influence of the family on the decisions of both the physician and the patient.
In light of the above, two models of the socially ideal patient and physician and the relationship between them can be broadly outlined, representing the extremes of West and East.
Outline of the “Western” model
The physician informs the patient alone and directly. The ideal patient talks openly about death and has a particular perception of individuality, which puts him in a leading position compared to family and friends, as regards decision-making. The “Western” patient will take his remaining life into his own hands, he will be optimistic, he will fight to live, participate in cancer support groups, consult a specialist about his depression and anxiety; he will write about his experience and readily participate in medical research so as to help save other patients. He is able to discuss the subject of euthanasia and put it into practice when he decides that there is no hope of cure.
Outline of the “Eastern” model of the patient
The patient is taken to see the family physician after a long period of symptoms that he or she had not mentioned, from fear of worrying his family. On his first visit he is accompanied by one or more close relatives, who play a leading role right from the start. The patient will prefer not to be informed directly, especially if his illness is terminal. The relatives will take the physician aside and ask him not to inform the patient, moreover they too will avoid discussing the matter. They will change the subject when the patient asks questions, so that he will eventually stop asking. The patient cannot be given the basic information about his disease and cannot say anything to oppose the physician. The family plays the role of mediator and participates in the triangle physician-patient-relatives. The patient will end up dying at home, surrounded by people who love him and take care of him until the end.
Informing the cancer patient is legally complicated. The involvement of law in medical matters is perhaps a new procedure. To date, no mention has been made in any code of medical deontology regarding the duty of the physician to tell patients the truth about their illness; to the contrary references abound on the duty of the physician to alleviate patients’ suffering in every possible way.
In the codes of ethics of more recent times, referring to patient autonomy and the duty of the physician to inform patients, differences exist between East and West. In USA, the physician is obligated to tell the truth as a consequence of the patient’s rights. To the contrary, the law, particularly in Eastern countries, is not clear. In general, it is the duty of the physician to tell the truth. An exception is made in the case of a serious prognosis. In such circumstances, the family can be informed. Nevertheless, even in Japan, a country whose medical practice is traditionally paternalistic in nature, things are changing. In Greece, there is a long tradition of hiding the truth, with strong medical and family paternalism. Nevertheless, the definitive text “Code of Medical Deontology 2005” leaves no room for any exceptions to the rule of informing the patient, apart from persons incapable of giving consent, in which case such individuals shall be informed as far as possible.
The matter of whether or not to hide the truth from the cancer patient unquestionably instigates great philosophical debate since it constitutes a matter of ethics. The main principles involved here, on the basis of the principles instituted in the “Universal Declaration on Bioethics and Human Rights” of UNESCO regarding informing the patient, are as follows:
A) The principle of Autonomy and individual Responsibility
B) The Consent
C) The principle of Benefit and Harm
D) The human Dignity and human Rights
E) The Privacy and Confidentiality
F) The respect for human Vulnerability and personal Integrity
G) The respect for Cultural Diversity and Pluralism
Autonomy
The main arguments in favour of truth telling originate from respect of autonomy, which can only be ensured by fully informing the patient. One argument in favour of telling the cancer patient the truth is based on the different concept of autonomy in Eastern world, which has as focal point, the idea of the family as a unit, as apposed to the person as a unit.
Consent
Those in favour of truth telling believe that cancer patients cannot grant informed consent to a therapy if they are unaware of their condition. The “contractual” argument is based on the fact that the physician-patient relationship is “contractual” in nature, in the sense that the patient authorizes the physician to do what is best for him in whatever way he deems necessary.
The principle of Benefit and Harm
Those in favour of hiding the truth usually acknowledge that some rights are being infringed on. They nevertheless believe that the “paternalistic” approach is justified on the basis of the principle of “do no harm” and the principle of “beneficence”. They present the argument of “therapeutic privilege” which concerns informing the patient as part of the “therapy”. Those arguing against the “harm” principle raise the question of “what is wrong” and who qualifies to define it.
Respect for human Rights
As regards respect for rights, two rights are examined:
The right to know the truth and the right “not to know” the truth.
Those in favour of informing the patient believe that it is the physician’s duty not to deceive patients by giving them false hopes for therapy. Furthermore, many are in favour of truth telling, not only for the benefit of the patient, but also for that of medical practice itself.
Those who hide the truth invoke the principle of the incertitude of scientific knowledge in medicine, which promotes the theme of relative truth (since absolute truth is impossible). Consequently it is morally permissible for the physician to lie.
The argument for the right “not to know” is based on patient autonomy and resides in the fact that many patients act in a way indicating that they do not wish to learn the truth. At the same time, total understanding is not necessary since the patients are making other important decisions in the absence of specialized knowledge. Opposers of this argument claim that, on the one hand, when someone does not ask, this does not necessarily mean that he does not want to know and on the other hand that this “right” does not respect patient autonomy. In fact the term “auto-paternalism” is used.
Privacy and confidentiality
Other arguments include the matter of confidentiality of information and privacy. Basically, medical confidentiality is breached when the physician informs the relatives first, or informs them exclusively. On the other hand, some claim that medical confidentiality extends to include the family as a whole and applies only to people outside the family.
Respect for cultural Diversity
The matter of informing patients is closely linked to the principle of respect for cultural differences. Cultural diversities relating to those matters result in a different hierarchy of values and different meanings attributed to them by each society. Thus, importing practices of informing patients into different cultures constitutes an imposition of “foreign values” in these cultures. Considering the matter of respect for cultural diversities when informing patients, other important problems of the “slippery slope argument” type arise. For example, if moral and legal acceptance exists in some countries with traditionally paternalistic medical practices, cultural diversity could be used as a justification for “laxer” rules on matters of informing research participants, or for using medical data for various purposes.
Respect for human vulnerability
The principle of respect for the “vulnerable patient” is strongly connected with this subject. Patients and in particular patients with a disease as serious as cancer, are, by definition, in a vulnerable position and the concealing of information can make this position even more difficult. Here the “slippery slope argument” has particular weight. What happens if there are no specific rules forbidding lies and this method becomes established? Can the good intentions of the physician and relatives be taken for granted? How can the patient be protected from an environment that is not looking out for his best interests? Conversely, hiding the truth can be considered necessary for the purposes of respecting the vulnerable patient as far as his protection from bad news and the therapeutic privilege are considered.
An argument based on empirical studies
From quantitative studies, it appears that physicians do not correctly anticipate their patients’ wishes as regards being informed, since the choices of a person facing
death are different from those of trained personnel. As for relatives, they appear to request a much more aggressive handling of patients “everything possible to be done” compared to that which they would wish for themselves.
Conclusions
In accordance with the contemporary models of respect for patients’ rights, truth hiding is a “wrong” strategy. The effect of cancer on the body and soul of a patient does not differ from country to country, since human nature and needs are universal. There are, however, deep-seated opinions which make the strict adoption of “Western” precepts an imposition of foreign values on the different meaning of autonomy of patients in the Orient.
There is no doubt that every patient has the right to know what is going on in his or her body and to play an active role in treatment decisions. Nevertheless, the patient must, above all, be in a position to be able to deal with the consequences. This ability is not an innate trait, which some possess and others do not, but the result of prior information and experience of such matters, which could be achieved through training programmes organized by schools and the mass media. At the same time, communication skills must be taught to physicians, just as the method of knowledge transfer is taught to educators. Consequently, for the perfect communication to be achieved, patients and physicians must be instructed in such skills.
To conclude, in my opinion, a previous relationship based on trust is fundamental. This is the reason why the patient must be informed by the family physician and not by “specialists” who have never met him or her before. All this needs time, a phased method of informing that is tailored to the characteristics of each society, the improvement in socio-economic standards of countries that are crippled by poverty and illiteracy and the training of physicians. Legal regulations should be the result of this procedure.
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