Of all diseases, cancer probably elicits the strongest emotional reaction, and this is even more true if one is an affected patient.
Of all diseases, cancer probably elicits the strongest emotional reaction, and this is even more true if one is an affected patient. To expect a one-size-fits-all solution to the extremely delicate problem of oncologist-patient communication that will work for everybody, including those from different communities and different countries, is unrealistic and naive. Nathan Cherny brings this out very succinctly in his discussion of autonomy, culture, and paternalism.
In the western societies of North America, Northern Europe, and Australasia it may appear appropriate for patients to participate directly in obtaining information, forming an understanding, and making decisions regarding their disease process and management. But even in these so-called developed societies there is definitely a percentage of people who are more comfortable with voluntary diminished autonomy, and there may be an even larger percentage who prefer relational autonomy. If the oncologist, in his communications with people in these categories, tries to follow the basic “isolated autonomy” approach, which is required by law in some countries, he will be doing great harm to these groups of patients, even though what he does may be the norm for that society.
It may be difficult to understand that, in a country like India, certain cultural necessities dictate decision making by family members, with the patient being kept in the dark to a greater or lesser degree (depending on the individual family). Generally, this approach to medical decision making is alien and unappealing to most people with a Western mindset. But the same approach is found in many other societies in Asia, Southern Europe, and South America-although there are obvious developmental changes in certain segments of these populations, resulting in their edging toward Western perceptions and requiring communication similar to that of Western societies.[5,6]
“Culture is the set of distinctive spiritual, material, intellectual and emotional features of society or a social group, and it encompasses, in addition to art and literature, lifestyles, ways of living together, value systems, traditions and beliefs”. Culture is inherently diverse and is very complicated. At present, most patients and their immediate families in South Asian societies, especially in India, are comfortable with the type of family-centric decision making described above, in which the family may prevail on the patient to refrain from participating in the deliberations. A form of collusion is common between the oncologist and the family-with the full knowledge and complete acceptance of the patient.[8,9] If the patient happens to walk in during the discussion between the oncologist and the family, and if the prognosis of his or her disease does not appear satisfactory, the conversation will shift to a more acceptable “recovery plot.” This shift is generally made with the good intention of shielding the patient against losing hope. Eventually, someone in the close decision-making family circle will be privy to all the details regarding the stage of the patient's disease, expected treatment benefits, and prognosis. An Iranian study concluded that patients who did not know their cancer diagnosis had a better physical, social, and emotional quality of life. The Navajo people also consider it harmful for a patient to receive direct information. This is in contrast to countries like the United Kingdom, where the societal preferences-and those of most patients-are generally for bad news to be delivered personally and directly.
One of the accepted realities of life, however, is the inevitability of change; change is associated with various aspects of our lives beyond simply the temporal. In parts of Asia, nowadays-for example, in Malaysia and Singapore-there is a definite movement toward the concept of the patient being the primary one to be informed about the disease and its prognosis.[5,6,13] A recent study of 469 patients who responded to a questionnaire distributed by the psychooncology department at a major regional cancer center (Cancer Institute [WIA], in Chennai, India), found that 39.9% did not want any information about their disease or treatment and another 25.4% were satisfied with little or a moderate amount of information. However, what is important is that 33.3% of respondents very much wanted to know all the details. In the same study, 70.8% of respondents also indicated that they were not at all satisfied with their relationship with their family. These findings probably reflect the change that is occurring. In theory, it appears quite logical for a middle-aged patient to know about a dismal prognosis, as this can lead to a realistic decision to tie up the loose ends in his or her life, and to take care of the necessary family arrangements and legal formalities in accordance with his or her preferences. Initially there might be a phase of disbelief and denial, or the patient might go through the various phases of the Kbler-Ross model, but when clarity eventually sets in, most patients can make sensible decisions. The increasing desire on the part of patients to participate in decision making may also be seen in other Asian countries, such as Saudi Arabia, Japan, and Pakistan.[15-18] Nonetheless, the clear disparity between what people would like to be told should they develop cancer and what patients with cancer know about their disease is brought out by studies done in these countries, as well as in others, such as Nepal, India, and China.[19-24] Thus, it is better for the oncologist to first ascertain the preferences of both the patient and the family and then to proceed accordingly, always keeping the best interests of the patient in mind. Sometimes this may entail divulging details in instalments to buffer the impact.
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The facts of life are that in a majority of cases in a country such as India-and probably in many other Asian countries-families still frown on patients being assaulted with truth (soft paternalism?), if this is done, it can sometimes even lead to the patient being removed from the treatment center. Oncologists' unwitting tendency to not fully inform patients/families of the extent of the benefit of the therapy-which may at times be very limited and associated with significant side effects-as well as their tendency to consider anything nonsurgical as justified no matter how useless, is not uncommon. This type of paternalism is a phenomenon that needs immediate attention and correction, however difficult that may be.
In conclusion, in our present day heterogeneous society one has to take into consideration the local factors in whichever part of the world one is practicing with regard to disclosure of details during communication, and then behave accordingly. However, we also have to be conscious of and sensitive to changing trends. As has been said, when in Rome, do as the Romans do. This is true of many aspects of life and was aptly expressed by a couplet from the collected Tamil maxims known as the Thirukkural, some 2000 years ago:
Who know not with the world
in harmony to dwell,
May many things have learned,
but nothing well.
Financial Disclosure:The author has no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this review.
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