Cancer Investigation, 5(2), 151-154 (1987)

PSYCHOSOCIAL ISSUES
Jimmie C. Holland, M.D.,Editor

An International Survey of Physician

Attitudes and Practice in Regard to
Revealing the Diagnosis of Cancer

Jimmie C. Holland, M.D.,

Natalie Geary, B.A.,
Anthony Marchini, B.A., and
Susan Tross, Ph.D.
Psychiatry Service
Memorial Sloan-Kettering Cancer Center
N e w York, New York 10021

Abstract
In 1984, questionnaires were sent to members of the International Psycho-Oncology
Society concerning the practice in their country with regard to revealing the diagnosis
of cancer to patients, their opinion about the effect of their policy, and their impres-
sion of local trends and attitudes toward cancer. Data from 90 respondents from
20 countries revealed that use of the word “cancer” was often avoided in discus-
sions with the patient. Words commonly substituted for cancer were those that im-
plied a “swelling” (e.g., tumor, growth, lump), and “injlammation,” or a
pathophysiologic change (blood disease, precancerous, unclean tissue). Oncologists
estimated that a low percentage (< 40%)of their colleagues revealed the word cancer
in Africa, France, Hungary, Italy, Japan, Panama, Portugal, and Spin. Oncologists
from Austria, Denmark, Finland, l7ze Netherlands,New Zealand, Norway, Sweden,
and Switzerland, estimated the percentage to be high ( > 80%). However, in all
countries, the majority ofphysicians tell the family the diagnosis. The majority (90%)
reported a trend toward increased telling of the diagnosis, due to greater patient
informution and expectations, and increased physician openess in using the word
cancer. Most (68%)felt that the overall effect of revealing the diagnosis was positive.
While emotional distress was transiently greater when patients were told, there were
positive effects concerning coping, compliance, tolerance of treatment, planning for
fiture, communication with physicians and others, and improved prognosis. The tran-
sient negative effects were depression, anxiety, and anger. It is important to recognize
that efforts to j n d the “correct’’ position about revealing or concealing cancer
diagnosis must recognize that the language between doctor and patient is constrained
by cultural norms. Communicationis likely to be far less dependent upon the specijc
words used then upon the meaning that is conveyed by the doctor.

151

Copyright 0 1987 by Marcel Dekker, Inc

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INTRODUCTION
Over the past few decades, debate has increased in most
countries about whether the most compassionate
psychological management of the patient is represented
by revealing or concealing the actual diagnosis of cancer
(1). This debate often becomes acrimonious when oncolo-
gists from different countries attempt to defend their par-
ticular practices. In many countries, open discussion of
cancer diagnosis is viewed as cruel and inhumane; in other
countries, including the United States, concealing the
diagnosis is regarded as both unethical and illegal.
It is of interest that these debates about psychological
management usually fail to recognize that both the doctor-
patient interaction, as well as response to life-threatening
illness, is embedded in the larger cultural context (2,3).
While research often notes cultural factors as important,
few studies have examined the influence of culture on the
interaction of doctor and patient in discussions of cancer
diagnoses (43).
The formation of the International Psycho-Oncology
Society (IPOS), in 1984 provided a forum in which cross-
cultural issues could be more clearly addressed by virtue
of the opportunity for interchange among oncologists in-
terested in psychosocial aspects of cancer. Prior to the
first meeting, oncologists who had expressed interest in
membership in IPOS were surveyed regarding their opi-
nion about the practice of physicians in their countries
in regard to revealing the diagnosis of cancer to the pa-
tient and family, and the impact of this disclosure upon
them. Reported here are descriptive data obtained from
their opinions.
METHOD
A face valid questionnaire assessing these issues was
distributed to 220 oncologists whose names were available
through membership in IPOS.Of these questionnaires,
77 were returned. An additional 13 questionnaires were
independentlyobtained from Africa and Spain. The ques-
tions were formulated to ask the individual oncologist’s
opinion about his impression of the practice of physicians
in his country in regard to the management of the diagnosis
of cancer. The questionnaires thus requested the in-
dividual’s overall impression of physicians’ practice in
his country, not specifically related to that in a particular
city or hospital. From this selected nonrandom sample,
the opinion survey data were tabulated.
Holland et al.
Table 1
90 Oncologistsa Surveyed from 20 Countries
Africa Denmark Hungary Norway
Australia England Italy PiUliUM
Austria Finland Japan Portugal
Belgium France Mexico Scotland
Brazil E. Germany The Netherlands Spain
Canada W. Germany New Zealand Sweden
Switzerland
%rgely from teaching hospitals; adult and pediatric oncologists.
RESULTS
The 90 oncologists who participated were from 20 dif-
ferent countries (Table 1) with a range of one to seven
from each country. They were pediatric and adult oncolo-
gists, largely from teaching hospitals.
Respondents were asked to list the terms used by physi-
cians to inform the patient of his or her cancer diagnosis.
They reported words which physicians frequently
substitute for the word cancer in spealung to patients about
their diagnosis. These terms could be grouped into three
general categories: those representing (i) a swelling or
enlargement (tumor, growth, lump, cyst, polyp, mass,
wart); (ii) an infection (inflammation,virus, abscess); and
(iii) a pathophysiologicalchange (chronicdisease, anemia,
blood disease, lesion/precancer, cellular change, unclean
tissue) (Table 2).
The oncologists surveyed were asked to estimate the
percentage of physicians in their country who disclose the
diagnosis of cancer to the patient. Physicians from several
countries estimated a low percentage (< 40%): Africa,
France, Hungary, Iran, Panama, Portugal, and Spain.
Others indicated that a high percentage (> 80%) of
physicians in their country reveal the cancer diagnosis to
the patient: Austria, Denmark, Finland, The Nether-
lands, New Zealand, Norway, Switzerland, and Sweden
(Table 3).
Of all the oncologists surveyed, a majority (80%)
agreed that the vast majority of physicians in their coun-
try inform the patient’s family of the diagnosis. Almost
as many report a poor prognosis to the family. Some on-
cologists felt that reporting a poor prognosis precipitates
revealing the diagnosis of cancer, while others felt that
the diagnosis is only appropriately disclosed if the prog-
nosis remains hopeful.
Physician Attitudes in Revealing Cancer Diagnosis 153

Table 2 Table 4
Words Commonly Substituted for Cancer Oncologists Opinion About Change in the Practice
of Telling in Their Country
Swelling Infection Pathophysiology
~

~~ ~ ~~
90% of Physicians surveyed felt a change was occurring toward
Tumor Inflammation Chronic disease more open disclosure.
Growth Infection Anemialblood disease
Lump Virus Lesionlprecancerous
cyst Abscess Cellular change
Polyp Unclean tissue
Mass
Table 5
Wart
Reasons Reported by Physicians Which Account for
the Trend Toward Greater Disclosure of the Diagnosis
Table 3 The complex nature of diagnostic tests and treatment which re-
quire patient cooperation
Oncologists’ Estimated Percentage of Physicians
in Their Country Who Disclose Cancer Diagnosis Legal and ethical concerns about informed consent
Tell to the patient: Patients greater information and expectations
Low %a High%b Physicians’ comfort with more open discussions about cancer
Africa Austria
France Denmark
Hungary Finland
Iran Netherlands
Panama New Zealand
Portugal Norway Table 6
Spain Switzerland Effect of Telling the Patient the Diagnosis
Sweden
Positive 68 %
Tell to the family:
Conditional 14%
High % estimated by majority of physicians Negative 12%
aLow % = < 40%. No effect 6%
bHigh % = > 80%.

Significantly, over 90% of the respondents reported an

increasing trend in the percentage of physicians in their
country who reveal the cancer diagnosis (Table 4). These
oncologistsattributed this trend to (i) the complex natllre of Table 7
diagnostic tests and treatment which require patient Belief of Physicians About the Psychological Consequences
cooperation; (ii) increasing legal and ethical concerns of Telling Diagnosis to the Patient
about informed consent; (iii) patients’ greater informa-
tion and expectations; and (iv) physicians’ greater com- Negative effects psychological
fort with more open discussions about cancer (Table 5 ) . Positive effect on: state (transient)
Sixty-eight percent of the oncologists surveyed felt that Coping Depression
disclosing the diagnosis of cancer to the patient has a Compliance Anxiety
positive effect; twelve percent felt that disclosure of the
Communication , Resentment/anger
cancer diagnosis had a negative effect (Table 6). Positive
changes resulted in increased patient coping, compliance, Tolerance of treatment
communication, tolerance of treatment, planning for the Planning for future
future, confidence in the physician, and course of illness. Confidence in physician
Negative changes, however, were seen in patients’ affect, Course of illness
with transient depression, anxiety, and anger (Table 7).
154
DISCUSSION
Cancer is a disease which respects no national borders.
It is one of the most feared diseases by people in all
cultures. “Cancer equals death” is a commonly held
belief. In fact, cancer has been so dreaded and feared that
the word for cancer, irrespective or language, has tend-
ed not to be used, in the hope that substituting a less
frightening word would shield the patient from the fear-
some diagnosis and resultant anticipation of death. The
euphemisms used for cancer indicate the effort to give
a benign “diagnosis.” The doctor shares the societal
restraint about the open disclosure of “bad news.”
However, by demeanor and manner, the seriousness of
the condition, whether the word cancer is used or not,
is likely conveyed. Accompanied by a false optimism by
the doctor, the effect has been described as one in which
no one acknowledges the truth and the patient is left alone
and isolated.
This “not-telling” practice has continued through most
of this century in most countries, with the marked excep-
tion of the United States. Societal pressures, generated
by concern for patients’ rights as consumers of medical
care, constraints of informed consent, and societal ques-
tioning of the authority of the physician, have shifted the
practice to one of disclosure of not only the diagnosis but
also the prognosis, as patients participate in discussions
about all the treatment options, even resuscitation. Re-
cent years have seen a backlash to doctors’ present custom
of truth-telling. They are presently being criticized for
“too harsh truth-telling,” at times destroying hope, when
the patient needs hope to physically and mentally cope
with disease and treatment. In fact, one of the major tenets
of alternative cancer therapies is that they unequivocally
offer hope, providing both explanation of disease cause
and a curative therapy.
These data, from physicians from widely different
societies, suggest that there may be a “goodness of fit”
between the patients and doctors, whose attitudes are
similarly affected by the cultural context. In general they
are congruent, reflecting the custom which is thought, in
that culture at that time, to represent the most humane
Holland et al.
approach. There clearly are wide cultural variations, and
there are also widely disparate differences within a
culture, especially in relation to urban versus rura: dif-
ferences. And, of course, the recognition that physicians
themselves each differ from the other, and in the manage-
ment of individual patients, is another consideration.
Nevertheless, the critical issue is that the physician must
be reponsive to the expectation of the patient as to what
may be revealed in that society. Applying what is regarded
in one culture as a “humane” approach, may in another
culture be regarded as “inhumane” and cruel.
Irrespective of differences, the data revealed a clear
trend toward more open disclosure in all cultures, accord-
ing to oncologists sampled. It will be important that physi-
cians internationally recognize the impact of cultural
norms upon the custom of truth-telling and their impact
on patients whose expectations reflect those dictated by
the social context. Efforts to suggest that one position or
another in regard to revealing or concealing the cancer
diagnosis is the “correct” posture is to fail to recognize
that both physician and patient are constrained by their
cultural norms, at that point in time. The communication
between doctor and patient about such issues, irrespec-
tive of the words chosen, is likely far less dependent upon
the exact words used than is assumed. The important bond
is determined by the way the information, whatever it is,
is expressed and the meaning that is conveyed.
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