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.[1]
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.[2] 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.[3]
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).[4] 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”.[7]
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.[10] The Navajo people also
consider it harmful for a patient to receive direct information.[11]
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.[12]
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 Kübler-Ross
model, but when clarity eventually sets in, most patients can make sensible
decisions.[14]
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.
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[25]:
E. Hemanth Raj, MS, MCh, PhD
Cancer Network
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