Influence of Truth Disclosure on Quality of Life in Cancer Patients
- Raghwesh Ranjan and K.K. Dua
Department of Zoology,
Dayalbagh Educational Institute (Deemed University),
Agra 282 005, INDIA
Email: kkdua@agraonline.com
Email: mailto:raghwesh_26@yahoo.com
Eubios Journal of Asian and International Bioethics 10 (2000),.
Abstract
Truth disclosure to cancer patients has been an ethical and controversial issue in the
medical profession, as some physicians are of the opinion that disclosure of truth to the
patients having cancer may harm the psychological state of the patient, while others say
that one must subject the patient to psychological counselling prior to truth disclosure.
A survey in India revealed that physicians initially withheld the truth and then disclosed
it to the nearest relative of the patient. Therefore the present study was undertaken to
reach a point of view where the dilemmas and contradictions nullify and yield an
acceptable conclusion. Functional Living Index _€ Cancer (FLI-C) questionnaire was
used to study the influence of truth disclosure in India. The results suggested that truth
disclosure did not affect emotional factors significantly, where as truth concealed
patients were more physically sound, able and sociable than truth disclosed ones.
Therefore, the analysis of data suggests that more supportive care is necessary for
cancer patients, both psychologically and physically, in particular those with incurable
cancer. Further, the physician patient relationship needs to be more ethical and
convincing to encourage truth disclosure in India.
Key Words: Cancer, FLIC, Quality of Life, Pre-disclosure psychoanalysis, PostDisclosure counseling, Truth Disclosure
Introduction
Cancers are responsible for about 12% of the deaths throughout the world. In the
developed countries cancer is second leading cause of death, next to cardiovascular
deaths accounting for 21% (2.5 million annual deaths) of all mortality. In developing
countries cancer ranks as third cause of death and accounts for 9.5% (3.8 million annual
deaths) of total death (1). Information dissemination to the patients about cancer is a
controversial issue. Its practice in country like India, where truth disclosure is not
mandatory, calls for a deep study to reach a point of view. The issue has provided a
deep impact on physician _€ patient relationship. Medical practice is associated with
ethical dilemmas and these may vary between countries. Ethical principles formulating
physician's obligations in one country may not necessarily be regarded as appropriate in
another (2). Thus the issue is a bioethical problem. The term Bioethics came to us only
in 1970 but its origin is as old as human origin (3).
India is a vast country where the society is highly segmented on the basis of economic
and professional status of individuals. The Indian society is in state of socio _€
economic transition. Here diseases like cancer are regarded as giant monsters and
patients relinquish all hopes of survival. India is culturally a diverse country. Each
culture possesses its own canonical and content _€ full understanding regarding how to
provide appropriate information to the right person in the right place at the right time in
a right way (4). Currently, Indian society leads the physician to tell a terminal diagnosis
or prognosis to a representative of patient's family rather than to the patient directly. The
physicians seem to be particularly concerned about emotion in truth disclosure.
Although one Japanese study showed that truth disclosure had no harmful effect on
cancer patients (5), virtually there is no further information regarding the influence of
truth disclosure on quality of life in cancer patients. Therefore the present investigation
was undertaken to establish a point of view where dilemmas and contradictions nullify
and yield an acceptable conclusion.
Methodology
Study setting: The study was initiated in July 1999 with its completion in October 1999.
The study was conducted at Meharbai Tata Memorial Hospital (MTMH), Jamshedpur
and Rajiv Gandhi Cancer Institute and Research Centre, Delhi. The two cancer institutes
were chosen to draw a sample size of 50 each for truth disclosed (TD) and truth
concealed (TC) categories.
Patients: All subjects were outdoor patients on regular visits. A minimum of six-week
interval was allowed before the questionnaire was handed to the patients having
knowledge of their disease. Patients who were given appropriate information by their
attending physicians were included under the TD category. Patients who were not aware
of their disease, who were in suspicion or in state of ambiguity, were considered in TC
category. The cancer patients included in the study are 50 in TD group and 50 in TC
group.
Questionnaire: The Functional Living Index _€ Cancer (FLIC) questionnaire was used
for carrying out this study. The FLIC was originally developed for cancer patients
during a clinical trial (6). The questionnaire was used in same form except that two
questions were removed and hence it had 20 questions. The FLIC questionnaire had two
parts apart from Respondent's Profile section. Part A was just for seeking general
information. Part B had 20 questions that were concerned with four factors _€
Emotional, Physical well being and ability, Sociability and others. The Question
Number 3 of Part A of FLIC and all the questions of Part B of FLIC were considered
for statistical calculations. (Table 1) A copy of questionnaire sheet was handed to the
patient and they were asked to answer at the outpatient clinic. The patients were assured
that the study was entirely voluntary and there would be no inconvenience if they
refused to participate. Items in the questionnaire consisted of Hindi version translated
from original English questions. The word "disease' replaced the word "cancer' as the
same questionnaire was meant for both TD and TC categories. The questionnaire had
"good' and "bad' ends and it was on a Likert _€ type scale with all items scored on a
scale of 1 to 5. The ends of scales were reversed in items 4,6,19 and 20 of the
questionnaire.
Statistical Analysis: The results of reversed scales in FLIC were all arranged in a way
that higher values indicated better quality of life (QOL). A spreadsheet was prepared in
which number of patients from both categories opting for a specific option were entered
for all questions from 1 to 20. If x number of patients opted for option 1, the score
awarded will be x X 1 = x. Similarly if number of patients opting for options 2, 3, 4 and
5 are say a, b, c and d, then the scores awarded will be 2a, 3b, 4c and 5d respectively.
Finally the questionwise score was reached by adding up the optionwise score for each
category (TD and TC) separately. Finally all the scores for different questions were
added up for each category for a factorwise comparative score chart. Distribution of
patients in the FLIC table was analysed by chi-square test, and p<0.05 was considered
to be statistically significant.
Results
Patients profile: The number of patients included in the study was equal for the
categories, TD and TC. The TC group had a larger proportion of females than the TD
group. The origin of malignancies included 9 stomach, 12 large bowel, 1 liver and 20
pancreas. Most of the females included in the study had breast cancer followed by
carcinoma of cervix and others. Males had maximum cases of oral and lung cancer
followed by cancer of pancreas. Background profile of patients in both the groups is
summarised in Table 3 with their clinical features.
Comparison of FLIC scores in two groups: Table 4 summarizes the distribution of
patients in the FLIC options. There was no significant difference in the factors of the
emotional domain between the two groups. In the physical well-being and ability
domain, QOLs of the TC patients were higher in the factors of "pain or discomfort
interfering", "pain or discomfort related disease" and "how well" than TD patients. This
statistical significance in "personal hardship" was due to uneven distribution of FLIC
options without consistent trend among TD and TC patients. QOLs of TC patients were
higher in the factors of "hardest to the closest" and "spend with friends" in the
sociability domain, and the factor of "confidence in treatment" in the other domain than
TD patients.
Table 1: FLIC QUESTIONNAIRE STATUS: - TD/TC
PART _€ A
1. For how long you have been suffering?
2.
3.
4.
5.
How much investment (in rupees) has been made till date?
Your family members have been very supportive to you (Y/N)
How co-operative has your Doctor been to you?
Have you been fully satisfied with your Doctor's performance?
PART _€ B
1. Most people experience some feelings of depression at times. Rate how often you
feel these feelings?
2.
3.
4.
5.
6.
7.
How well are you coping with your everyday stress?
How much time do you spend thinking about your illness?
Rate your ability to maintain usual recreation or leisure activities.
Has nausea affected your daily function?
How well do you feel today?
Rate the degree to which your disease has imposed hardship on those closest to
you in past two weeks.
8. Rate how often do you feel discouraged about your life.
9. Rate your satisfaction with your work and your jobs around the home in the past
one-month.
10. How uncomfortable do you feel today?
11. Rate in your opinion, how disruptive your disease has been to those closest to
you in past two weeks.
12. How much is pain or discomfort interfering with your daily activities.
13. Rate the degree to which your disease has imposed hardship on you (personally)
in the past two weeks.
14. How much of your usual household tasks are you able to complete?
15. Rate how willing you were to see and spend time with those closest to you in
past two weeks.
16. Rate the degree to which you are frightened of future?
17. Rate how willing you were to see and spend time with friends in past two weeks.
18. How much of your pain or discomfort over the past two weeks was related to
your disease?
19. Rate your confidence in your prescribed course of treatment.
20. How well do you appear today?
Table 2: DOCTORS VIEWPOINT QUESTIONNAIRE
1.
2.
3.
4.
For how long are you practising truth disclosure?
Do you practise truth disclosure? (Y/N) Why?
If yes do you go in for pre _€ disclosure psychoanalysis? (Y/N)
What according to you is the influence of truth disclosure on Quality of Life in
cancer patients?
Table 3: Background Profile of TD and TC categories who participated in the study of
truth disclosure.
TD
TC
50
50
Age in Years
47(25
_€69)
38(22
_€ 54)
Male/Female
30/20
28/22
Number of
patients
MALIGNANCY
Stomach
4
5
Colon
6
6
Liver
1
0
Pancreas
8
12
31
27
Others
CHEMOTHERAPY
Intravenous
36
31
Per _€ oral
8
12
Table 4: Factor-wise composite score
FACTORS
TD
TC
EMOTIONAL
FACTOR
831
866
PHYSICAL WELL
BEING AND
ABILITY FACTOR
1260 1327
SOCIABILITY
FACTOR
644
737
OTHER FACTOR +
Q3 (FLIC-A)
507
518
Table 5: Factorwise break-up of questionwise score
FACTORS
TD
TC Difference
Factor _€ I: EMOTIONAL
FACTOR
Q1
160 169
9
Q2
125 133
8
Q3
194 198
4
Q8
186 185
+1
Q16
166 181
15
Factor _€II: PHYSICAL WELL
BEING AND ABILITY FACTOR
Q4
148 172
24
Q6
141 151
10
Q9
166 160
+6
Q10
137 131
+6
Q12
130 134
4
Q13
165 159
+6
Q14
133 149
16
Q18
124 137
13
Q20
116 134
18
Factor _€III: SOCIABILITY
FACTOR
Q7
147 169
22
Q11
143 198
55
Q15
185 182
+3
Q17
169 188
19
Q3(FLICA)
220 210
+10
Factor _€ IV: OTHER FACTOR
Q5
112 119
7
Q19
175 189
14
Tables 5 and 6 summarize the FLIC score of two categories. FLIC for depression factor
was higher in TC group than TD group (160 /169). The score for "frightened of future'
was higher in TD group than TC group (186 / 185). The score for "satisfied with work',
"personal hardships' and "spend time with family' was higher in case of TD than TC.
The comparative score was 166/160, 165/159 and 185/182 respectively. The score for
all other questions were higher for the TC group than TD group (Table VI). Overall, the
score of TC was higher for emotional (831/866); physical well being and ability
(1260/1327) and sociability (644/737), other factor (507/518) than TD group.
Discussion
Out of 30 physicians included in the study 20 were against truth disclosure. Their views
revealed that practice of truth disclosure might affect patients' quality of life adversely.
On contrary, physicians favouring truth disclosure disclosed that some of their patients
sank into depression at the mere utterance of the word cancer and hence they were
comfortable using word tumour.
The prevalent dilemma with respect to truth disclosure among the physicians in India
and the analysis of FLIC questionnaire between the two groups reveals that there is a
lacuna in the physician _€ patient relationship. An overview of the results suggests that
truth disclosure does not affect the emotional factors significantly where as truth
concealed patients are emotionally stronger, more physically sound, able and sociable
than truth disclosed ones.
Albeit statistically insignificant, total FLIC scores that the TD patients were more
affected by depression, stress and a sense of insecurity than TC patients. All these
indicate that the patients had many questions hovering but no one around to furnish
answers. The family support derived by the patients was better in TD group than TC
group. As shown by the supportive attitude of family members the result shows
favourable response. The data analysis revealed that TD patients were willing to spend
most of their time with their family members rather than with their friends. This is
because they feel that the disease has been very disruptive for their family members and
hence it a sort of emotional support and consolation by being with them.
Noticeably, the confidence in treatment was found to be poorer among TD patients than
TC patients. The confidence in treatment in Japan was better in a similar study
conducted there by Tanida et al. (5) among truth disclosed patients. The comparative
study confirms apathetic attitude of physicians in India towards patients having
knowledge of their disease. These results indicated that TD patients demanded more
support and care from their physicians. _@Deeper understanding on the issue of truth
disclosure and care of cancer patients is necessary for physicians to responds to the need
of the patients.
Cancer patients in the late terminal stage may not want to be informed of their condition
(7) .So respect must be shown for patients who have expressed a wish not to be
informed of truth (8). The study in Japan showed that TD patients had an initial shock
followed by stress reactions such as denial, anger, bargaining and depression (5), as
described in western countries (9&10). However these patients recovered from initial
shock within a week due to supportive care of health workers and physicians. (5) This
supportive and caring attitude was not found to be the same in Indian context. The
physicians favouring truth disclosure never tried to study the psychological makeup of
their patients. Pre _€ disclosure psychoanalysis to ascertain whether the patient can bear
the shock or not and post _€ disclosure counselling to facilitate coping with stress as
part of stress management may be practised.
It was observed during the study that the family members of TC group patients tried to
ignore queries like "Am I suffering from cancer?" and always tried to hide the facts.
They were personally depressed and few even wept in the absence of the patient. In case
of TD group patients included in the study, their family members were also aware of the
disease. Here an important feature was observed. Although, either of them was
depressed, each one tried to hide their psychological state of mind in togetherness. The
family members of the subjects included in the study (both TD and TC) supported and
encouraged the patient in majority of cases with fewer cases of dejection.
Table 3: Optionwise spreadsheet of FLIC questions
OPTIONS
_@
I
II
_@
III
IV
V _@
Factors TD TC TD TC TD TC TD TC TD TC
Chi2
P
Factor _€ I EMOTIONAL FACTOR
Q1
0
1
18
8
8
13
20
27
4
1
8.87
0.06
Q2
17
16
12
11
8
10
5
0
8
13
6.48
0.16
Q3
0
2
1
0
14
12
25
20
10
16
5.09
0.27
Q16
1
0
13
13
15
8
11
14
10
15
4.49
0.34
Q8
0
0
14
16
6
2
10
13
20
19
2.55
0.46
Factor _€ II PHYSICAL WELL BEING AND ABILITY FACTOR
Q4
12
11
8
16
6
10
14
10
10
3
8.14
0.08
Q6
6
8
13
9
9
17
10
8
12
8
4.49
0.34
Q9
0
0
10
16
19
16
16
10
5
8
3.71
0.29
Q10
11
10
8
13
18
16
9
8
4
3
1.55
0.81
Q12
11
11
17
13
3
12
19
9
0
5 14.50
0.005
Q13
0
0
12
20
19
7
11
17
8
6
9.11
0.02
Q14
5
3
21
13
11
18
12
14
1
2
4.55
0.33
Q18
12
11
14
11
12
16
12
4
0
8 12.97
0.01
Q20
0
1
0
1
25
37
16
3
9
8 13.27
0.01
Factor _€ III SOCIABILITY FACTOR
Q7
0
0
25
15
12
8
4
20
9
7
4.12
0.002
Q11
10
6
7
4
16
23
14
20
3
7
4.86
0.30
Q15
0
0
15
13
0
4
20
21
15
12
4.50
0.21
Q17
0
3
11
1
24
13
0
11
15
12 35.93 <0.0001
31
24
12
16
3
6
4
4
0
0
2.46
0.48
Q3
(FLICA)
Factor _€ IV OTHER FACTORS
Q5
3
2
32
31
15
13
0
4
0
0
4.35
0.22
Q19
12
15
17
14
13
15
0
6
8
1
12.2
0.01
The analysis of the above parameters therefore suggests that more supportive care is
necessary for cancer patients both physically and psychologically, in particular those
with incurable cancer. Further, the physician _€ patient relationship in India needs to be
more ethical and healthy to practice truth disclosure with an input of rationale
dissemination of information to the later.
Acknowledgment
We are extremely thankful to Dr. Noritoshi Tanida, Department of Internal Medicine,
Hyogo College of Medicine, Mukogawacho, Nishinomiya, JAPAN for his continuous
and selfless help.
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