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: 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, Post-Disclosure 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. How much investment (in rupees) has been made till date?
  3. Your family members have been very supportive to you (Y/N)
  4. How co-operative has your Doctor been to you?
  5. 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. How well are you coping with your everyday stress?
  3. How much time do you spend thinking about your illness?
  4. Rate your ability to maintain usual recreation or leisure activities.
  5. Has nausea affected your daily function?
  6. How well do you feel today?
  7. 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. For how long are you practising truth disclosure?
  2. Do you practise truth disclosure? (Y/N) Why?
  3. If yes do you go in for pre _€ disclosure psychoanalysis? (Y/N)
  4. 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

Number of patients

50

50

Age in Years

47(25 _€69)

38(22 _€ 54)

Male/Female

30/20

28/22

M A L I G N A N C Y
Stomach

4

5

Colon

6

6

Liver

1

0

Pancreas

8

12

Others

31

27

C H E M O T H E R A P Y
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(FLIC-A)

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

Q3 (FLIC-A)

31

24

12

16

3

6

4

4

0

0

2.46

0.48

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.

References

1. Chaturvedi R.M. (1999) Prevention of Common Cancers in India, I Conference of Behavioural Scientists , 2-3 Oct., Agra , India

  1. Asai A. What ethical dilemmas are Japanese physicians faced with?, EJAIB 7(1997), 162 -165

  2. Macer D.R.J. Bioethics for the People by the People (Eubios Ethics Institute 1994).

  3. Fan R. Truth telling to the patient: Cultural Diversity and East Asian Perspective, Bioethics in Asia (Eubios Ethics Institute 1998).

  4. Tanida N. et al. Influence of Truth Disclosure on Quality of Life in cancer patients, Int. J Clin. Oncol., 3 (1998), 386-91.

  5. Schipper H. et al. Measuring the Quality of Life of cancer patients: The FLIC development and validation, J Clion. Oncol. 2 (1984), 472- 83

  6. Abrams R.D. The patient with cancer, NEJM 274 (1966), 317_€22.

  7. Kobayashi K. et al. Quality of Life studies in Japan: Problem in investigation of QOL, Ann. Cancer. Res. Ther., 3 (1994), 83-9.

  8. Bahson C.B. Psychologic and Emotional issues in Cancer: The psychotherapeutic care of Cancer patients, Semin. Oncol., 2 (1975), 293-309.

  9. Buckman R. How to break Bad news: A guide for health care professionals. The John Hopkins University Press 1992.


Commentary by Tanida
Go back to EJAIB 10 (5) Sept. 2000
Go back to EJAIB
The Eubios Ethics Institute is on the world wide web of Internet:
http://eubios.info/index.html