is it wise to tell the truth, the whole truth, and nothing but the truth to a cancer patient?

Is It Wise to Tell the Truth, the Whole Truth, and Nothing but the Truth

to a Cancer Patient? SAWSAN EL-GHAZALI

Behavioral Medicine Unit Department of Community, Environmental,

and O c c ~ ~ a f ~ o n a ~ Medicine Ain Shams University

Cairo, Egypt

INTRODUCTION

The physician-scientist, particularly as a member of a clinical cancer research institution, faces many ethically troublesome situations.’ Those working on scientific and medical frontiers should be specifically trained to identify, analyze, and resolve ethical dilemmas. However, the question addressed-what should patients know?-is a very difficult one.2

Caring must be considered a major part of the management of patients suffering from cancer. Complicity-based caring is characterized by verbal and nonverbal behavior of patients sharing a common experience. This type of caring is better conducted through a third party-i.e., medical staff-who bring patients together with similar experiences. Action-ori- ented caring consists of interacting with other patients as an antidote for one’s own fear, panic, or anguish. Solidarity-based caring helps patients find and maintain their own identity, pride, and dignity. Cooperative caring can be observed in group settings such as support groups or vegetar- ian cooking classes for cancer patients. Self-centered caring refers to the various forms of concern one has for ~neself .~

Difficult moral concerns and choices are a characteristic of palliative cancer therapy. Patient information, palliative chemotherapy, treatment with unconventional remedies, and chemical drug development involve important issues.’ Experts contend that biotechnology therapies will shift the site of cancer treatment from external systemic treatments, such as radiation and chemotherapy, to targeted tumor-specific drugs that boost the immune system. That change alone holds many implications for oncology management.4

The physician who treats cancer patients is particularly exposed to ethical problems in his daily routine. These ethical dilemmas occur at almost every stage of the cancer patient’s treatment from diagnosis through treatment to the final stages of his or her illness, such as

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98 ANNALS NEW YORK ACADEMY OF SCIENCES

disclosure of the diagnosis of cancer and the place of mutilative surgery and other aggressive modalitities in cancer treatment. Only awareness of these problems and open discussion will help the oncologist to treat his or her patient in the best possible way.5

Some researchers have investigated the information given to their patients according to the stage of their cancer.6 Others have identified issues that are central in the treatment of dying children and their families, assuming that management of the terminal phase of illness has a dra- matic effect on the psychosocial recovery of the family7 It can be argued that the ”bearable truth” has to be supplied to the patient; however, the application of this concept needs time and dedication to the patient.8

In a study of 50 patients with lung cancer: 2 patients would have preferred not to have been told the diagnosis. In Chinese culture, a study was conducted of 50 Chinese families dealing with childhood cancer. All identified cancer as the most frightening disease.’O

Another aspect of truth-telling is providing patients with the ”whole truth” about treatment-e.g., its side effects and toxicity-and whether informed consent should be requested before starting treatment. The issue is what information should be revealed to the patient. In order to totally satisfy the patient’s ”rights,” informed consent forms should be encyclopedic, providing the ”whole truth” to the patients. However, this would not meet the moral goal of shared decision making, because few patients would be able to make sense of such data.”

Delays in seeking diagnosis and care for cancer are as prominent now as they were 50 years ago. These delays may be seen as attempts to resolve or postpone the crisis brought on an individual by the suspicion of terminal illness.12

and Lau and HartmanI4 have shown that typically people’s thoughts about common illnesses have five components: (1) a label or name for the illness; (2) a list of consequences; (3) a time course; (4) a cause; and (5) a cure. The mental representation of an illness is called a folk belief system.I5

This chapter will focus on patient-doctor communication and truth- telling and will include interviews with two patients from the Egyptian community who have breast cancer.

Ditto et

SUBJECTS AND METHODS

This study is composed of two parts. The first considers doctors’ opinions on telling the truth to their patients who suffer from cancer. A ques- tionnaire of 23 items designed by the author was distributed to male surgeons (female surgeons are very scarce in Egypt) in the field of general surgery working as staff members in a university hospital in Cairo. The

EL-GHAZALI: TELLING THE TRUTH TO A CANCER PATIENT IN EGYPT 99

TABLE 1. Telling Patients about Their Condition

Surgeons with Surgeons with > 20 y Experience

(n = 50) < 10 y Experience

(n = 50)

1st Visit

a. When is the patient informed about his condition?

As 1st opinion 35 (70%)

(82%)

(100%)

As 2nd opinion 41

Terminal stage 50

Later Visit 1st Visit Later Visit ___- __ -.

15 5 45 (30%) (1 0%) (90%)"

9 11 39 (18%) (22%) (78%)"

0 50 0 (100%)

Yes

b. Does the type of cancer determine the time of truth-telling? 5

exception? 35

(10%) c. Is breast cancer an

(70%) d. Does the sex or age of the patient determine the time of truth-telling? 3

(6%)

No Yes No

45 18 32 (90?'0) (36%) (64%)"

15 45 5 (30%) (90%)

47 24 26 (94%) (48%) (52%)"

Patient Spouse Relatives Patient Spouse Relatives __

e. Whom do you prefer to inform about the diagnosis first? 3' 18 29 0 32 18

(6%) (36%) (58%) (64%) (36%)"

" p < 0.001. b p < 0.02. cDepends on the situation.

total sample consisted of 100 surgeons, who were divided into two groups for comparison, according to their length of professional practice in their specific fields of surgery. The first group had more than 20 years' experience, and the second group had less than 10 years' experience. The ques- tionnaire requested information in six categories.


TABLE 2. Timing and Amount of Truth-Telling

Surgeons with Surgeons with > 20 Years' Experience

(n = 50) < 10 Years' Experience

(n = 50)

1st Visit Later Visit ~~~~

1st Visit Later Visit ~~~~ . ~~

a. When is it more traumatizing for the patient to be told the truth? 45 5 48 2

(90'?'0) (10%) (96%) (4%)" ~~

Yes No Yes No ._____-___ ~ -~

b. If the patient is informed at the first visit, is there a decline in mood in later visits? 5 45 30 20

( 1 O?o) (90%) (60%) (40%)''

All Some Little ~ _ _

All Some Little __ ____

c. How much information do you prefer to disclose about the patient's condition? 15 30 5 2 28 20

(30%) (60%) (10%) (4%) (56%) (40Y0)~

" p > 0.05. b p < 0.001.

Category I (7 questions) included a group of questions concerning telling the patient about his condition as regarding (a) first or later visits; (b) stage of cancer; (c) type of cancer; (d) age or sex of the patient; (e) who is to be informed of the diagnosis first.

Category 1I (3 questions) includes a group of questions concerning the traumatizing effect of when the patient is told his diagnosis and the depth of information the patient should know.

Category III (2 questions) includes a group of questions concerning the length of time the doctor spent with his patients and whether or not it was influenced by the type of cancer or not.

Category IV (3 questions) includes a group of questions concerning the patients' acceptance of their condition; whether or not they come back to the doctor.

Category V (4 questions) includes a group of questions concerning the giving or taking away of hope.

Category VI (4 questions) includes a group of questions concerning management procedures.


TABLE 3. Length of Time Spent with Cancer Patients



(n = 50)

Yes No Yes No -~~ ~~ ~

a. Do you think the type of cancer determines the amount of time spent with a cancer patient? 44 6 45 5

(88%) (12%) (90%) (1 0%)

15 min 20min 30min 15 min 20min 30min .____ ~- .._______

b. How much time do you spend with each patient? 10 35 5 18 31 1

(20%) (70%) (10%) (36%) (62%) (2%)

NOTE: For a and b, p > 0.05.

Statistical analysis was done using the chi-square test. The second part of this study is a comparative scenario with two

female patients with breast cancer, from different social classes and with different personalities. Each patient was interviewed by the author on two separate occasions, each lasting two hours. One of the cases was pre- sented at the First International conference of Behavioral Medicine held in Cairo, Egypt, in November 1994.

RESULTS AND DISCUSSION

Human behavior is the product of two domains. The first domain is the person, who is composed, according to the writer's point of view, of three integrated circles: body, spirit, and mind. The second domain is the person's environment, which serves as a matrix in which he/she is embedded. Cancer in our community is called the "insidious," "wicked," "cruel," or the "very bad" disease. In our community the word "cancer" is very traumatizing, as cancer and death have so often been synonymous in the minds of so many.

Many researchers have tried to measure or define the quality of life. Jenkins summarized it as three F's, feelings, function, and future.I6 To my mind this could be functionally translated into three H's, happiness, health, and hope. "Doctor" originally meant "teacher." What is the role of this teacher when facing a patient with cancer? What is the role of


TABLE 4. Acceptibility to Patient of Knowledge of Condition



(n = 50)

Yes No Yes No

a. Do some patients wish they had never been told their diagnosis? 10 40 15 35

(20%) (80°/o) (30%) (70%)"

Return Leave Return Leave

b. What percentage of patients who are told their diagnosis return to the physician, and what percentage leave? 75% 25% 5 95%b

Fear To Seek Referred by Fear To Seek Referred by Second Another Second Another Opinion Physician Opinion Physician

c. Why do you think those who leave do so? 50% 40% 10% 5% 45% 5Oo/ob

"p > 0.05. *p < 0.001.

experience in handling such a problem? This study shows that the length of experience in handling patients with such an insidious disease is of great importance.

Regarding the timing of giving the diagnosis (TABLE la), we can observe that this was done during the first visit to the doctor (experience over 20 years) in 70% and in 82% as first and second opinions, respec- tively; compared to 10% and 22% among surgeons with 10 years' experience or less; the difference proved to be statistically highly significant ( p < 0.001). This observation held for all types of cancer except breast cancer. Senior surgeons explained that they were afraid they may lose the case, that the patient may be reluctant to return for further procedures; in order to avoid that, they resorted to increasing the awareness of their patients or their relatives so that they would approach the condition with the utmost seriousness. On the other hand, the junior staff preferred to confirm the diagnosis and to gain the trust of the patient first. Also, the type of cancer and the gender or age of the patient had no effect on the


TABLE 5. Giving Hope to Cancer Patients and Their Relatives

Surgeons with Surgeons with > 20 Years’ Experience

( n = 50) < 10 Years’ Experience

(n = 50)

Yes No Yes

a. Is the patient diagnosed as terminal told there may be hope? 50 0

(100%) b. Are relatives of the terminal patient told there may be hope? 7 43

(14%) (86%) c. Have you ever told a patient there is no hope? 0 50

d. Have you ever told a ( l O O ~ / O )

(%lo/,) (10%) relative there is no hope? 45 5

50 (1000/0)

38 (76%)

0

10 (20%)

No

12 (24%)

50 (100%)

40 (80%)

mode of thinking of the senior surgeons (TABLE lb-d). As regards who is informed first about the diagnosis, both groups preferred to face the spouse or relatives with the diagnosis rather than the patient (TABLE le).

The two groups agreed that giving the diagnosis on the patient’s first visit is more traumatizing to the patient, as shown in TABLE 2a and b. With regard to how much information to give the patient, the two groups of physicians disagreed, with 30% of the more experienced doctors pre- ferring to fully disclose the patient’s condition, as opposed to 4% of the less-experienced group (p < 0.001; TABLE 2c).

TABLE 3 shows that the type of cancer affects the amount of time the doctor spends with the patient in both groups; however, as regards the actual time spent, the average time was between 20 and 30 minutes. Less experienced surgeons spent less time with their patients, presumably due to their lack of communication and comforting skills, which are more developed among the more experienced surgeons.

The acceptability of the patient’s knowledge of his/her condition is revealed in TABLE 4a, which shows similar results with both investigated groups. However, the rate of patients leaving the doctor’s care was greater among those physicians with less than 10 years’ experience; the reason for leaving was to seek another opinion or referral to a more experienced doctor. Surgeons of more than 20 years’ experience said that fear was the reason for leaving in 50% of cases (TABLE 4c).


TABLE 6. Management Procedures



(n = 50)

Yes No Yes No

a. Do you request consent before radical treatment? 50 0 50 0

(100~0) (100%)

Patient Relative/ Patient Relative/ Spouse Spouse

b. If yes, from whom? 50 0 45 5 (100%) (goo/,) (10%)

Yes No Yes No

c. Do you think psycho- logical therapy should be implemented as an adjunct to cancer therapy? 50 0 50 0

(100~/0) ( l O O ~ / O )

d. Do you think surgeons should undergo special training in order to deal better with cancer patients? 7 43 38 12

(14%) (86%) (76%) (24%)"

p < 0.001.

TABLE 5 shows physicians' practices regarding the giving and taking away of hope. In terminal cases, no one in the included sample was able to say "There is no hope" to a patient. However, with relatives surgeons with longer experience (goo/,) were straightforward in telling them "There is no hope," compared to 20% among the junior staff.

The last category of the first part of the study focused on the ethical procedure for consent request (TABLE 6a-c). There was no difference between both groups; however, there was greater flexibility among the junior staff (10%) to obtain consent from the spouse or relatives. The junior staff was in favor of special training in dealing better with their patients (76%), while only 14% among the more experienced surgeons was in favor of such training (TABLE 6d).

The second part of the study was an interview of two women with breast cancer (see TABLE 7). The first woman was 50 years old, married, had no children, worked as a secretary, and was of middle social class.


TABLE 7. Interviews with Two Breast Cancer Patients

Question Response ~. ___ _ _ -~

Patient No. 1 Patient No. 2

What was your first reaction when you sus- pected you had cancer?

What was your reaction after the diagnosis was confirmed?

What was the message, and who told you?

Did you sign a consent before your operation?

Did you know exactly what was written on it?

Do you think you condition could be some sort of punishment?

Who supported you in your crisis?

What was your complaint after radiation and chemotherapy?

Do you feel some difference in your coping abilities after having suffered the condition than before?

I felt afraid.

I accepted my fate.

You have something in your right breast, and it should be operated on My sister and a close friend.

Yes.

Not exactly, but I under- stood that a radical procedure would be done if necessary.

No, I did not harm any- body; it is a test from God.

My spouse, family members, friends, and colleagues. I realized how much they love me.

Gastrointestinal trouble, and I felt sad for my hair loss.

Yes, I became more sen- sitive than before. I couldn’t bear feelings of apprehension.

I couldn’t believe it.

I was severely depressed and felt devastated.

You have an abscess in your breast and should have a biopsy taken. My mother and brother.

Yes.

Not exactly, and I denied to myself that a radical procedure would be done.

I asked myself is it a punishment? But why?

My family, although I am depressed because some friends did not ask, although they knew.

I was depressed because of my hair loss; that made me very sad.

I don’t like feeling pitied by others. I prefer to be alone for meditation.


TABLE 7. Continued

Question Response

Patient No. 1 Patient No. 2

What is your evaluation of this experience?

What do you want to say about cancer to other women?

What was the role of the doctor in your experience?

When and how did the doctor inform you about your condition?

What was the most critical time during the whole experience?

What do you feel now?

First I felt afraid. Then, in time I realized how much my family, friends, and peers love me. Thank God!

It is fate. I never com- plained. Everything happened within one week.

It was positive. I trusted him, and he reassured me.

In my first visit he assured me and asked for investigation. In my second visit he was worried and said that I had a tumor (he never said “cancer”).

Before and after the opera tion.

I thank God.

I still do not believe what happened to me. It is like a nightmare.

It is surpising, but although I heard about it, I never imagined I would be a victim of cancer. It is the end.

It was positive, but I felt that it was my own problem.

He did not tell me I had something serious. Later I knew that my family had asked him not to tell me.

Before and after the operation, and now because of my hair loss.

I don’t exactly know, but I feel that I will never be as before.

The second woman was 51 years old, particularly beautiful, married, had one married daughter and one son in final stage of his university studies, did not work, and was of high social class.

Answers given by the first woman showed acceptance of her condition. Those of the second woman showed refusal to accept her situation; she felt that what she had contracted was a sort of punishment (”I don‘t believe it, it’s like a nightmare,” etc.); also, her family played a role in ask- ing the doctor not to tell her about her condition.

What is interesting is that neither woman knew exactly what was


going to be done during her operation. The most critical time for them was immediately before and after the operation, which draws our atten- tion to the importance of social support during that period in particular. The side effects of radiation and chemotherapy were very distressing for both of them. Loss of hair, the crown of beauty, was very depressing, particularly for the second woman, perhaps because of her social rank and beauty. Also, her comment that ”cancer is the end” reflected how gloomy she felt. The first woman coped with her condition by accepting the disease as “fate” and by thanking God, while the second woman could not hide her feelings of agony and sadness, although she was also a believer. A similar story was told by a Slovenian lady whom I happened to meet during a ~onference.’~ This suggests that women’s agony when facing breast cancer is universal.

It is interesting in this regard to refer to a study about mammography screening among a group of Egyptian females of different social back- grounds over 35 years of age.IR This study showed that even among the group of Egyptian female medical staff, 79% did not consider having this screening, because of the fear of discovering breast cancer.

In conclusion, this study reveals that the doctor’s experience plays a role in communication and truth-telling. Relatives and spouse as social supports are the recipients of this truth-telling. In the Egyptian community it is very rare to find a patient, particularly one with rural roots, vis- iting a doctor alone; he/she usually is accompanied by two or three relatives. While senior surgeons depend on their communication skills, junior surgeons prefer to underdo training in that field.

Finally, we should learn how to cope with cancer, how to live with it, how to make it part of our lives and not be afraid of or fight it. We should learn to be courageous and face the situation rather than trying to escape from it. Our efforts should be directed toward learning how to cope with bad news and to realize that it is part of our life.

ACKNOWLEDGMENT

The author thanks Dr. Youssef Sorour for his contribution.

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is it wise to tell the truth, the whole truth, and nothing but the truth to a cancer patient?

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