Communication with Cancer Patients The Influence of Age, Gender, Education, and

Health Insurance Status

MEHMET SEN"

Department of Radiation Oncology Dokuz Eyfiil University Medical School

i nc i ra l thn i r , Turkey 35340

INTRODUCTION

Effective and clear communication is essential to the physician-patient relationship.' It is particularly important in the care of cancer patients because of their wish to be informed and involved in medical decision making24 and the legal requirements now in place for informed consent for recommended investigatory procedures and treatments. A diagnosis of cancer goes against common sense and often evokes emotions that can be difficult to deal with. Interactions between cancer patients and their doctors generally concern issues of vital importance to the patient which may be emotionally charged and can lead to psychiatric disturbance in a certain proportion of The possible costs of poor communica- tion include increased anxiety, distress, coping diffi~ulties,~ noncompli- ance with treatmentT8 loss of confidence in medical staff, and dissatisfaction with medical care.

The object of doctor-patient communication is to relate correct and useful information to the patient in a way in which patient recollection will be accurate and consistent. Improvement of this communication process, particularly within the cultural context of the patient population, requires a degree of sensitivity concerning the various communication styles of physicians, and the various coping styles of patients. A hypo- thetical model of this issue, and various methods of improving commu- nication, are published in the literat~re.~, '~

The information and statistics presented in this study were gathered in Izmir, Turkey from questionnaires administered to Turkish cancer patients. While there are great differences between the Turkish patient population and the European patient population in terms of culture and religion, mass communication media appear to have "leveled the playing

"Present address: Christie Hospital, Department of Clinical Radiology, Wilmslow Road, Manchester M20 9BX, England.

514

SEN: INFLUENCES ON COMMUNICATION IN TURKEY 51 5

field” in terms of general awareness of the disease. However, in Turkey the general ability to squarely face the prognosis in severe cases is very limited when compared to that of the patient population in Europe.

Despite increasing recognition of the need for effective doctor-patient communication, there are still big differences in communication with can- cer patients. In the Western world there is no argument regarding disclo- sure of diagnosis and the possible treatment strategies, but there is still a debate regarding disclosure of the prognosis. Ninety percent of all United States physicians reveal a diagnosis of cancer to their patients.” But in many countries nondisclosure is still common.12 In Turkey, as in some European and many Middle Eastern countries, the public regards the diagnosis of cancer as a death sentence. In such situations physicians are reluctant to pronounce the diagnosis, and even more reluctant to reveal the exact prognosis to the patient directly. Written informed consent for recommended investigatory procedures and treatments is not a routine procedure throughout the country. Experienced oncologists realize that most of their patients know their diagnosis, even if it is not discussed openly between patient and physician. Through increasing availability of information on cancer in the media, even patients with minimal general education have become aware of many facts about the disease. A high percentage of patients now know that if, after a certain surgical interven- tion, their physicians advise ”electrical polishing” or limited dosages of slightly toxic drugs so that “the disease should not recur,” this actually means that they are undergoing radiotherapy or chemotherapy. Of 45 cancer patients investigated in the chemotherapy day clinic in Istanbul, no significant differences were found between groups of different educa- tional levels in awareness of disease or in patient satisfaction with the available medical services. High educational level patients had signifi- cantly different patient-physician dialogue: these more educated patients asked significantly more questions, and more pointed questions, which resulted in a better communicative relationship between the patient and phy~ician.’~

In this study the percentage of patients who were given information about diagnosis, the degree of accuracy of their recollection of this infor- mation, information about treatment methods and results, the patients’ role in therapeutic decision making, satisfaction of the patients with the given information, and patients’ expectations of their physicians were assessed by a questionnaire. The influence of age, education, gender, and health insurance status on these parameters was analyzed.

SUBJECTS AND METHODS

The subjects included 120 cancer patients receiving treatment at the radiation oncology department of Dokuz Eyliil University in Izmir,

516 ANNALS NEW YORK ACADEMY OF SCIENCES

TABLE 1. Izmir Questionnaire for Assessment of Influence of Age, Gender, Education, and Health Insurance Status on Communication with Cancer Patients

Age: Gender: Education: Health insurance status: 1) Have you been informed about your diagnosis?

2) Your diagnosis:

3) Have you been informed about treatment methods and results? Yes No

4) Have you played a role in choosing your treatment? Yes No

5 ) Have you been satisfied with the given information about your diagnosis and treatments?

Yes No 6) What would you request from your physician?

Yes No

Turkey. They were given a questionnaire as in TABLE 1. Of the 120 ques- tionnaires distributed, 108 were returned, and an assessment was done by the author. TABLE 2 shows the demographic and disease characteristics of the subjects.

RESULTS

Ninety-six of 108 (88%) patients were informed about their diagnosis; 89 of 108 (83%) were informed about treatment methods and results; 53 of 108 (49%) played a role in the making the therapeutic decision; 68 of 108 (63%) were satisfied with the given information; 43 of 108 (40%) requested more information from their physician. TABLES 3-8 show comparisons of age, education, gender, and health insurance status on these parameters.

High-educational level patients and females were informed more often than patients of low educational levels and males (p < 0.05). Age and expense coverage status were found to be of no influence on the patients’ perception with regard to physician-provided diagnosis infor- mation (TABLE 3).

Females were more aware of their exact diagnosis than males ( p < 0.05). Age, education level, and expense coverage status were not found to be significant (TABLE 4).

Females were more accurately informed about their treatment meth- ods and results than males (p < 0.05). Age, education level, and expense coverage status were not found to be significant (TABLE 5). The accuracy of this information is a result of several factors, including physician-pro-

SEN: INFLUENCES ON COMMUNICATION IN TURKEY 517

TABLE 2. Demographic and Disease Characteristics of Subjects (n = 108)

Number Percentage

Gender Male 52 48 Female 56 52

Education level Elementary 78 72 Higher 30 28

Health insurance status With 90 83 Without 18 17

54 50 c 50 years > 50 years 54 50

Lung 28 26

Breast 22 20 Head and neck 35 32 CNS 7 7 Lymphoma 4 4 Genitourinary 2 2

Age

Type of cancer

Gynecological 10 9

vided information, intuition, and information from other sources. Further study will be needed to quantify more carefully the effects of each of these sources.

Younger patients (age < 50 years) played more of a role in their thera- peutic decision-making process than did elderly patients (p < 0.05). Patients who cover their own health expenses also played a greater role in the therapeutic decision-making process. Age and education level have no influence on this parameter (TABLE 6 ) .

The patients who were most satisfied with the diagnostic and treat- ment information they were provided were patients who covered their own health expenses (p < 0.05). There was no satisfaction difference among the other parameters (TABLE 7). It should be explained that in Turkey there is no private health insurance program. Almost all of the population has governmental health coverage. This system is used almost exclusively by people of limited economic means, but it offers lit- tle opportunity for patient choices. Patients of greater economic means often opt to pay for their own medical treatment, which allows maximum freedom to explore alternative options.

It can be seen in TABLE 8 that females’ expectations were for more information to be provided, while males’ expectations were for more care to be provided ( p < 0.05).

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TABLE 3. Percentage of Patients Who Were Informed of Their Diagnosis According to the Variables under Study

Variable YO Informed YO Not Informed x2

85 15

25 1.43

250 Education

Elementary

Higher Gender

Male

75

73 27

4 6.05"

96

62 38

4 18.14"

Female

With insurance Without insurance

Expense 96

77 94

23 1.93 6

p = 0.0139074.

'p = 0.0000205.

TABLE 4. Percentage of Degree of Patient Awareness of Diagnosis According to the Variables under Study

Variable YO with Suspicion YO with Certainty x2

30 70 1.27

250 Education

19 81

Elementary 28 72

87 1.87

Higher Gender

Male

13

38 62

89 9.89"

Female 11

With insurance 27 Without insurance 11

Expense coverage 73 1.23 88

"p = 0.0016620.

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TABLE 5. Percentage of Patients Informed about Treatment Methods and Results According to the Variables under Study

Variable % Informed YO Not informed x2

89 11 < 50

150 76 24

Elementary 83 17

Age

2.30

Education

0.02 Higher 80 20

Gender Male 69 31

Female 95 5

With insurance 81 19 0.20 Without insurance 89 11

10.32”

Expense coverage

‘ p = 0.0013150.

DISCUSSION

Though it is not a routine procedure to pronounce the exact diagnosis to the patients in Turkey, the results of this study showed that at this insti- tution 88% of the patients were informed about their diagnosis; this level compares favorably with the levels to be expected in Western Europe and the United States. In another study done in the same town 67% of patients who were referred from a radiation oncology treatment to psychiatric treatment were aware of their diagnosis, and 46% of these used the word “cancer.” An additional 17% of these patients used similar words such as ”bad illness, tumor,” etc.; and the rest of the group used neither ”cancer” nor any similar word. However, in the control group of this same (those not referred for psychiatric treatment) study the percentage of patients knowing their diagnosis was very low (2370).’~ We have no data to draw conclusions regarding the necessity for psychiatric treatment of the patients in our study who were informed of their condition. This very interesting relationship to a previous study will be a subject of future investigation. In our study however, highly educated patients and females were given more information than others ( p < 0.05). In our study the fact that females tended to be more informed might be due to the fact that their disease ( e g , breast and genitourinary cancers) results in a high percentage of body-altering surgery, and is by its very nature more diffi- cult to avoid recognizing. In another study of patients with breast cancer the patient-related characteristics of age, education, and stage of disease

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TABLE 6. Percentage of Patients Who Played a Role in Decision Making on Their Therapy

Variable YO with Role YO with No Role X2

61.1 38.8 <50

250 37.0 62.9

Elementary 51.2 48.7

Higher 43.3 56.6

Male 51.9 48.0

Female 46.4 53.5

With insurance 44.4 55.5 3.59 Without insurance 72.2 27.7

Age

5.34"

Education

0.28

Gender

0.14

Expense coverage

p = 0.0208994.

were independent predictors of accuracy of inf~rmation.'~ In our study 80% of patients correctly identified their diagnosis.

Females were more often accurate in their awareness of the diagnosis than males (p < 0.05). In Mackillop's study 98% of patients recognized that they had cancer, and 87% correctly identified the tumor type. Local and regional disease patients were also aware of this, but one-third of the patients with metastatic disease incorrectly believed that the cancer was localized.16 This indicates that the accuracy of information concerning the status of the disease tends to deteriorate as the disease progresses.

Females were given more information about treatment 'methods and results (p < 0.05). This is likely due to the nature of their disease as innu- merated above; and mostly the aim of the treatment was curative.

Published studies indicate that it is the wish of most cancer patients to be informed and involved in medical decision making Concerning their disease.*-'

In our study younger patients and patients who covered their own health expenses played a greater role in their therapeutic decisions. Young early-diagnosed patients wanted to keep their body image as intact as possible, and patients who covered their own medical expenses sought medical advice that agreed with their own desires to limit the invasiveness of recommended procedures. Patients who desired an active role in treatment decision making also desired detailed informa- tion.I7

Two-thirds of the patients in our study were satisfied with the infor- mation provided, and overall satisfaction levels were generally high. The

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TABLE 7. Percentage of Patients Who Were Satisfied with the Information Provided According to the Variables under Study

Variable % Satisfied YO Dissatisfied XZ

59.2 40.7 <50

250 66.6 33.3

Elementary 61.5 38.4

Age

0.36

Education

0.07 Higher 66.6 33.3

Gender Male 61.5 38.4

Female 64.2 35.7

With insurance 57.7 42.2 4.96" Without insurance 88.8 11.1

0.01

Expense coverage

" p = 0.0258917.

patients most satisfied with the information provided were patients who covered their own health expenses, as indicated earlier (p < 0.05). In Brooks's study, on the other hand, factual knowledge about cancer was greater among patients who were less satisfied with communication. Patients reporting the highest level of satisfaction with the information provided tended to want to avoid the harsh truth of their condition, and, at the same time tended to be less anxious about their prognosis.'* General satisfaction also depended not just upon communication with physicians, but also upon communication with other staff members in the de~artment. '~

As mentioned earlier female expectations were for more information to be provided, while male expectations were for more care to be pro- vided (p < 0.05). Males in this study mostly had inoperable and incurable disease. The prognosis of their disease generally was not provided to them because their health condition offered little hope of improvement, and they generally were not interested in learning the prognosis. Their interests generally centered on treatment that resulted in greater comfort levels.

While these findings should be interpreted cautiously, the results of this study done in the radiation oncology department of Dokuz Eylul University give some indications as to the expectations of cancer patients in their communication with their physicians.

The problems associated with physician-patient education on the sub- ject of cancer are greatly aided by printed information of a specific nature

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TABLE 8. Percentage of Patients' Expectations from Their Physicians According to the Variables under Study

Variable YO More Information YO More Care x'

150 Education

Elementary

Higher Gender

Male

Female Expense coverage

With insurance Without insurance

48

31

35

53

27

51.7

41.1 33.3

52

69 2.47

65

47 2.43

73.0

48.2 5.96"

58.8 0.12 66.6

Op = 0.0146621.

on the subject of the various forms of this disease. Unfortunately these materials are not readily available, and it is hoped that this situation will improve.

It should be pointed out that the oncology department at Dokuz Eyliil University has made a concerted effort to increase the level of physician- patient communication about diagnosis and prognosis, and this effort is reflected in this high percentage. The staff at Dokuz Eyliil University is largely European trained, and this certainly has influenced this effort, but very likely does not represent a general trend in the Turkish medical population.

The larger and more far-reaching question, however, is to define the situations within which more information is useful to the patient, and those within which more information is, indeed, to the patient's detri- ment. Some data explored in this chapter indicate that for some patients forcing acceptance of the reality of their disease results only in a deterio- ration of the quality of life for their remaining time. In other eircum- stances, and with other patients, more information is an absolute necessity. Some indications are that if the disease is treatable, and if the prognosis offers hope for remission or recovery, more information is use- ful. If, on the other hand, as shown in male lung cancer patients in our study, the prognosis offers essentially no hope, indications are, at least in the Turkish environment, that the patient would prefer to avoid con- frontation with this harsh reality. How this interplays with the legal requirements for disclosure and informed consent for diagnostic proce-

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dures and treatment is a very complicated issue, and beyond the scope of this chapter; but it should certainly be addressed in detail at some point. Further, how this set of data influences the overall physician-patient com- munication process also requires considerably more research, both in Turkey and in other cultural contexts.

ACKNOWLEDGMENTS

I wish to thank Professor Gazanfer Aksakoglu and Dr. Ozlem Ataman Uruk for their kind help in the statistical analysis of this data; and all members of the Department for their great effort to improve communica- tion with cancer patients. Also I wish to thank Dr. John Logue for his review and Mr. James Rimer for his kind assistance in straightening out the prose of this chapter.

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